Crohns Disease and my Experience...A Crohnies Life

Thank You Dr Dortin!

2012-01-24T19:33:00.002-05:00

OK it has been months since I have updated my blog ...mostly because I have been WAITING AND WAITING on doctors. After I got the results from the CT and Walking Test (which I posted under the previous post "Stomach and Liver and Lungs OH MY") I literally waited almost 6 weeks for the doctor who performed these tests to get back to me with what was next. She had mentioned doing a surgical biopsy but NEVER heard anything from her office about scheduling one. I even called and tried to find out what was going on but she never bothered to return a phone call.

This was RIDICULOUS so it was decided to forget her and see a new Pulmonologist. A very close friend of the family referred me to Dr J David Dortin. They got me in to see him rather fast and he was AMAZING. Showed up at the appointment and the day before he had spent around an hour doing research on my case - going through my record - and writing notes. When I met him for the first time I didn't have to spend time going over my past history; he already knew it! I was incredibly impressed by this - as no other doctor has ever done this before that I have seen. He spent an hour explaining things and going over what he wanted to do. Instead of repeating tests that previous doctors kept doing he ordered two tests I'd never had before.

One test was a lung test in nuclear medicine where I had to inhale this gas called Xenon through a mask while a machine imaged my lungs from every angle - 360 degrees! The machine then sucked out the gas from my lungs over 6 minutes so there was no residue (though I do have to carry a piece of paper in my wallet for 3 months because I can set off metal detectors lol - oh the things the body gets subjected to). After the gas was removed they inject a contrast directly in a vein called TC99-M and they took more images.

The second test I had that day was called a nuclear CT - it is exactly like a regular CT scan just using different contrast.

I returned to Dr Dortin today for the results. Well the results showed that the growths in my lungs had gotten worse. A thorough comparison was performed and the inflammation area in my right lung was noticeably worse. Since my body is so fragile right now do to my liver - a surgical biopsy can be somewhat dangerous. Dr Dortin is sending me to a specialist to do what is called an invasive bronchoscopy. I had a regular bronchoscopy done in November, 2011 and it was inconclusive. This hopefully will give some definitive answers w/o having to put my body through a surgical procedure. When I had my teeth extracted 3 weeks ago two of the sites didn't clot/stop bleeding for 24hrs - it would be a bad idea to do something more invasive right now.

I should have the date of the invasive bronch scheduled by the end of this week. Dr Dortin said if I had not heard anything from the specialist to call him, and he would personally call and have it taken care of! I LOVE THIS DOCTOR!!!

In the mean time I am still on oxygen 24/7 and waiting .... ALSO until it is resolved exactly what is going on in my lungs there is no way the transplant team will even consider a transplant. Since my immune system will be compromised after the transplant there is a potential that what is in my lungs could become fatal with an extremely compromised immune system. I am just glad that they are FINALLY being very proactive and not sitting on their asses.

Well that is what has been going on .... I want to thank everyone who is following my blog and takes the time to read it! I hope you are all well - and 2012 is treating you right.

Post to come Tuesday!

2012-01-21T02:57:00.003-05:00

UPDATE: I decided to postpone the post. I see my doctor on Tuesday and I will have test results. I figured it makes sense to post then instead of posting today - when I will have more answers on Tuesday!

This is lame ...but I promise to write a post this weekend!!!! So here is a post promising a post haha =P

Stomach, Liver, and Lungs - OH MY!

2011-11-09T19:49:00.015-05:00

My name is Jason Leitman I am 31yrs old from Cincinnati, OH. I have been living with Crohn's Disease for just over 26yrs now, and unfortunately recently a year ago found out I am in end stage liver failure.

I contracted hepatitis B sometime over the last 3yrs - the kicker being docs are almost positive it's from one of the many hospital stays/surgeries I've had; it only takes one person to not follow protocol and break the sterile field. I was put on the medication Humira to treat Crohn's (no one - including myself knowing I had hep b) and the combination of the two caused liver failure and extensive cirrhosis. I had surgery in Aug, 2010 to remove scar tissue and adhesion's in my bowel from past resections - and between the recovery, anesthesia, and medications (mostly for pain) it was the icing (or should I say Ascities) on the cake. I filled up with so much fluid called Ascities (bacterial filled nasty fluid that normally gets filtered by the liver, but when it fails builds up in the bowel) and my incision ripped....and the fluid was spraying out of me. I was rushed to the hospital where a paracentisis (they take a large boar needle and insert it into the bowel...hook up to suction and drain what they can) removed they remaining fluid (there was just about 2.5 liters of fluid left that time...after spraying out easily 3 liters).

I was in the hospital for 32 days, and they worked me up figuring out what was going on - finding the failure, cirrhosis, portal hypertension (hypertension of the portal vein in the liver), and a pulmonary condition called Hepatopulminary syndrome (broadening of the veins in the lungs making it hard to breathe).I wear 2.5 liters of oxygen 24/7 until after transplant (will take a year for the lungs to go back to normal).

Unfortunately I need a full liver - so have to wait until a match is found from a recently deceased person. The transplant team I am working with at The University of Cincinnati has been incredible. I refuse to give up, roll over and just let this get the best of me. I will fight until I have nothing left into me. The support from people on The Crohn's Disease Support Network - CDSN, friends, family, and new friends I've met on twitter have all been amazingly remarkable.

The non profit Warm Giving has commissioned two stunning necklaces from Rachel Miriam - a jeweler to help pay for the cost of post transplant that medicare/medicaid won't pick up (one is made of a light blue Chalcedony stone Necklace 1, and the other emerald quartz necklace 2 with a 14k gold chunk chain. and the other emerald quartz necklace 2 with a 14k gold chunk chain. Lastly another designer Marcia Moran designed these beautiful Earrings. They are also organizing a benefit dinner this winter in Los Angeles - I am beyond grateful (and extremely humbled).

While being worked up for listing - they ran what is called a high resolution CT scan of my heart to get a calcium score (they put you through a BATTERY of tests from MANY different departments to make sure the body can handle such a major surgery. After heart - liver is the most serious type of transplant). During the scan fortunately they caught a portion of my right lung in the imaging. The kicker is ...they found something called Tree and Bud Pattern Growth. This could be many thing from a fungal infection, viral, bacterial, pulmonary disease, or the worst cancer. They had me meet with a pulmonologist pretty much immediately, and they are working on getting o the bottom of what is going on. They seemed to have ruled out fungal, bacterial, and viral ...so hopefully it is just a pulmonary disease; there is a LONG LIST of diseases which can cause the growths. Here are some pictures of my lungs with arrows pointing to the tree and bud and nodules/masses. The nodules are the round spots and are 4-6mm in diameter.
Until they get to the bottom of what is at the bottom of what is growing they can't transplant me out of potential dangers. WELL that is everything going on right now ... Thanks everyone who takes the time to read this...and even respond. Like I said I refuse to give up ..I WILL keep on fighting.

UPDATE:
I had a walking test done - and finally got the results. Here are photos of what it showed, and the report from the doctor - here are the results:

They strap sensors to my wrist, and forehead then took me off oxygen. I walked from 1 cone to another. Where it says SP02 is the percentage of oxygen in my blood. Normal is 98% or higher; I got down to 81% and they had to add 4 liters of oxygen to continue. I still never got to normal. If anyone doesn't understand the "requires 4L of 02 to maintain 02 sats of 88%" means with 4 liters of constant oxygen the highest avg I got to was 88% oxygen in my blood. That is a fair amount of oxygen .... and still at 88. When 98% or higher is normal.

VERY short update

2011-08-23T11:33:00.001-04:00

Well ....I travel to Indianapolis today for my first meeting with the Liver transplant team tomorrow morning at Indiana University. I am rather excited and anxious ....but moving forward in some aspect is wonderful. I've somewhat felt I've been in Limbo; so this is nice. As soon as I know information I will update. I should get a lot of answers and make some progress towards getting a new liver tomorrow. Wish me luck! I hope you are all well - Jason

Quick Update

2011-06-13T15:10:00.003-04:00

Hi Everyone,
I wanted to write a real fast update! I am basically just waiting ... I switched liver doctors recently - because I was not happy with my old doctor. He would never answer questions, barely talk to me, and had the worst bed side manner. The new doctor I am seeing came highly recommended, and I really like him.

He has sent the paperwork out to Indiana University for the transplant evaluation team to contact me. I chose Indiana University (in Indianapolis, Indiana) because they are highly ranked among liver transplantation - and my doctor recommended them.

I've been in and out of the hospital a couple times since my last post do to fluid collection, and some breathing issues. It seems I've developed a syndrome in my lungs from the cirrhosis called Hepatopulmonary syndrome. This syndrome causes the veins of the lungs to broaden making it difficult for the lungs to fully expand. The only treatment for this is oxygen until after the transplant - the syndrome will(should) go away after.

That is where things stand ... I want to thank EVERYONE for all the incredible support and words of encouragement. They have helped more then anyone knows - they give me hope.

I hope this update finds everyone well (as can be) - and I'll write more soon! Jason

Here is a video from The Mayo Clinic discussing Hepatopulmonary syndrome

Dr Drops a Major Bomb ...

2011-05-10T00:32:00.004-04:00

I saw my new doctor again this past Friday for a followup from blood-work, and my recent trip to the hospital. As we were talking my father brings up the question/topic again of a liver transplant - and his feelings. He said I need to start planning for one. he recommended 4 places where he has sent patients, and have had good experiences. He suggested: Indianapolis, Ohio State University, The Cleveland Clinic, and The Mayo Clinic. After deciding where I want to go, will need to travel there to be evaluated by the transplant team. They go by factors - one major being something called a MELD score. MELD stands for Model for End-Stage Liver Disease. Right now my MELD score is about 15/16, and anything over 20 is dangerous. Even if the hepatitis B viral load drops, the damage (cirrhosis) has been done.

Needless to say I am scared, overwhelmed, frustrated, and confused. What ever the future holds I have a long battle ahead of me - something I plan on fighting. I truly hope I have the strength.

It's been some time ...

2011-05-05T07:02:00.006-04:00

Hi everyone sorry I haven't written an update in some time. I hope that everyone had a nice remaining winter - even though it still feels like winter in some areas - I'm glad spring is here!

I wanted to start off by thanking the website http://www.nursingschools.net/blog/2011/05/the-40-best-blogs-for-crohns-support for featuring this blog in their top 40. I mentioned to the site that it truly is a humbling honor to be recognized with the 39 other blogs/resources. It inspired me to give an update ... also it's 7:00am and I maybe got 3 hours of sleep.

A general update: Switched hepatology doctors this past month. The doctor who diagnosed me and, became my doctor just because I was in the hospital he happened to be on rounds. He was incredibly frustrating in he never gave answers or explanations to many issues going on with my body. All my father and I could really get out of him was that my viral load was going down (which is great btw in the hep b area). After my last hospital trip - which was futile - enough was enough. Through recommendations met with a new doctor and so far things are going well.

My liver function is the big issue right now. The new doctor took blood work, and I'm sure is going to run some tests to see what state the cirrhosis is in and if its spread. I have been having a lot of issues with edema (retaining fluid) causing my legs and stomach to swell. It's gotten to the point where my feet are very numb, it's challenging to walk, drive, and other activities because it creepily feels like I have no feet. I also have an amazing appreciation for pregnant woman as my belly is very distended and hard. I still can't believe it can stretch as much as it has! I've also started experiencing confusion, shaking of the body ...sometimes to the point you would think I am shivering after jumping into an ice cold lake yet I'm not cold, hard to eat cause I feel so full from all the fluid, dizziness, and nausea/vomiting. We'll see what this new doc has up his sleeve.

I had a port-a-cath (great info on wikipedia with images)installed on Thursday April 28th. For those who don't know a port-a-cath is a somewhat permanent central line. It is implanted under the skin (normally below the collarbone) and is accessible for IV usage, blood draws, CT contrast - etc. I have horrible time getting an IV and blood draws due to my veins being very small and overused through the years. The port can stay in for over 5 years, and I can't even feel it's there - truly amazing.

Crohn's disease wise apparently the last upper scope showed a reddening and thickening of the stomach lining. A lower scope showed the same reddening and thickening in my colon. Since having the scar tissue and adhesion's removed in August 2010 has really made an improvement for the most part in the Crohn's area - just need to get this damn liver under control. CDSN is doing well! We celebrated 1.5yrs on March 24th, 2010 and as of today have 1,138 members. I still can't believe how it is growing, and the kickass people who make up the community.

Alright this is much longer then I had anticipated so going to cut it off. I hope all are well, and a big thanks to those who take the time to read my tiny corner of the interweb =P

All my best,
J

Some info about me ...

2011-02-13T22:35:00.000-05:00

Hello everyone! Just wanted to start off by thanking everyone who is apart of CDSN. I truly never imagined when creating this network, that people would actually find it. For years I lived my life with great friends, family - but never really knew anyone else with Crohn's Disease ...or other IBD's like UC.

I've had 4 abdominal surgeries, and over 20 rectal/anal surgeries from fistulas and abscesses. I was always sick starting around 4-5yrs old - but the doctors never knew what to look for. When I was 10 my appendix ruptured - the doctors thought this was the underlying issue the entire time. The reality being Crohn's destroyed my appendix. I was finally diagnosed in 1999 at age 19. I had my first resection in 2000 removing around 2ft, and recently had one to remove a large amount of bowel adhesion's in Aug of 2010. In between I had a fistula at the bottom of my belly button - which started leaking bowel fluid. Had to have my belly button tract removed in 2004 - called an umbilectomy. The 3 fistulas that caused 20-22 rectal/anal abscesses were finally removed in 2005. They couldn't remove them earlier (even with cipro and flagyl) because of constant infection. The abscesses were very deep - so I had to be put under for all of them while they were cut, drained, and packed.

Unfortunately it turns out I've been living with Hepatitis B for the last 2.5-3yrs - and no one knew. When I was on the Humira, it gave the hepatitis an opportunity to be more aggressive - and cause some serious damage. Since I went so long without treatment it is already in stage 3. This means a transplant is in my future. The disease has become chronic, and caused cirrhosis of the liver. Cirrhosis for those who don't know is damaged scar tissue that never regenerates. It can also be a source of bacteria and disease. My liver function is not great which causes my body to retain fluid. I've had 4 (soon to be 5) times a paracentisis - where they take a 14 gage needle and insert it into the abdomen and drain the fluid. The last time they drained 3.75 liters (each liter ways 1-1.5lbs). When they first diagnosed me in October of 2010 I was in the process of serious liver failure, and my right kidney was shutting down from the retained fluid. I was in the hospital for 8 days, released for 2 days and then had to return for 25 days! YES 25! Right now I'm not 100% sure what the future holds (but who really does?) ... I just plan to keep on fighting.

For me this is turning into an incredible experience. Before CDSN I had never created anything on the web - outside of my personal blog. Hearing the feedback from everyone has been humbling, cathartic, surprising, and truly life changing. I've made new friends who I can say fully understand. When I was diagnosed in 1999, after 14yrs of never knowing what was wrong. I was 19, a point when I was ready to finally embark on my life - to live. Needless to say, staying in University or holding down a job was challenging. Since I was a kid I always wanted to help people. I tried returning to University to be a social worker...I still only have 4 credits lol. Long story short ... I finally feel like I'm accomplishing something with my life; something to wake up for - helping people.

For way too long I lived my life with Crohn's Disease running it. I've been on disability for years, I rarely want to leave the house for numerous reasons - whether it be a bathroom, pain, nausea, fatigue, worry of infection, ...I could go on. I felt *and kinda still do, working on it!* that staying home is easier - when there is a wonderful world around me that I am barely taking advantage of. CDSN has started to help me re-enter my life; step out of limbo and start living again. I've kinda always been a relentless optimist; never going to let Crohn's the best of me. I am ready to start living again, one day at a time. I am tired of Crohn's ruining so many wonderful opportunities, and relationships...I am someone LIVING with Crohn's NOT someone SUFFERING from it.

Thank you everyone who has taken the time to read this...Together as a community, we can let the world know about Crohn's Disease- put faces and stories to a disease that far too long has only been something people have heard of, or know someone living with it, but truly doesn't understand it.

I am going to stop rambling now... best wishes to everyone.

Saw The Doctor Yesterday ...

2010-10-19T14:00:00.001-04:00

I saw my Hepatologist (Liver Doc) yesterday and this is what I learned. My viral load (which means how many times the virus has replicated in my system) is very high at 110,000,000. The cirrhosis they saw is more extensive then they first thought. The doctor is starting me on a fairly powerful medication called Viread - originally approved by the FDA in 2001 to treat HIV patients, and in 2008 approved to treat Hepatitis B (HBV) patients

That is all I know right now ...I want to thank everyone for the incredible support! Thank you Thank you Thank you! As soon as I know more I will update.

All my best,
Jason.

1 Biopsy Back - 2 to Go!

2010-10-10T12:51:00.001-04:00

I received the results of the first biopsy - the one they could do locally and not send out.

To no surprise came back positive for Hepatitis B. Unfortunately it also showed that the damage is moderate to extensive. It also appears that I definitely have had Hep B for 2.5-3yrs now as someone who first gets sick their numbers are very high - mine were low (which means I've had it for "x" period of time). The biopsy also confirmed the cirrhosis on the liver, which is also extensive.

The next step is the results of the 2 remaining biopsies to identify which strain of Hepatitis B I have - as some medications work better on certain strains and vice versa. The last biopsy is to rule out Liver Cancer which is something that chronic/advanced Hepatitis B can cause.

The goal of treatment is to keep the function of my liver better then it is, and to prevent the cirrhosis from spreading. Since I already have a fair amount of damage talks of a transplant have been discussed. I will know more after my next appointment which is on the 18th. The other two biopsies won't even be back until mid/late this week.

I am handling things slightly better - but still overwhelmed and scared. I know I have a lot of amazing people rallying for me ... which is incredible. I am very grateful for the simple comments and well wishes. I WILL FIGHT this damn disease - not going to roll over. The treatments available today are very promising - considering 10yrs ago there were NONE and it was essentially a death sentence. NOT ANYMORE!

All my best to everyone,
Jason

Here are SOME Answers - UPDATED 6:34pm est 10/4/10

2010-10-04T17:20:00.002-04:00

Hi Everyone,
A lot of people have inquired as to my health since surgery. Surgery went really well - and for the most part had an easy recovery (minus a minor setback of tearing below my incision 2 days after being discharged. I felt good - the pain and nausea I was experiencing before the surgery was GONE.

They mostly removed a lot of scar tissue that had formed over the course of years from previous surgeries. This scar tissue was causing bowel loops to adhere together causing bowel obstructions - and the ridiculous pain and nausea.

Over the course of the month following surgery started to feel generally unwell. I was experiencing extreme bloating and distension - as well as a lack of appetite that got worse over the last few weeks. I also began having trouble urinating. What I was taking in was not coming out - and an analysis showed a lot of protein in my urine.

My general physician ordered a CT scan (for this past Friday Oct 1st) to check for anything - and they found something. I got an urgent call Saturday morning from him saying the CT scan showed a build up of fluid in the abdomen. The build up of the fluid is called ascites and I was full of it. In the ER they had to do a procedure called a Perentecious where they stick a large needle/catheter through my skin into the bowel and suck out as much as possible. They were able to remove 2.5 liters of fluid - not all of it but enough to keep my kidney's from shutting down. I had so much fluid it was putting pressure on the bladder making it hard to urinate, pressure on my lungs (was wheezing bad) and chest pressure.

NOW Ascites?!?! you may ask - what causes it? After being admitted and the battery of tests they performed and ordered (an ultra sound, tons of blood work to check for nearly everything, and this morning I had a scan which checks the blood flow from the spleen to the liver) Strange sounding right?

The ultrasound confirmed why I needed to be sent to the ER immediately, and why I am having all this fluid being formed and building up (lost 13lbs in fluid alone from Saturday to this morning) - I am currently experiencing liver failure and cirrhosis of the liver. The question is now WHY does a 30yr old who never drinks having cirrhosis and liver failure?!?!??! The doctors have started the puzzle - getting pieces - and are putting together the puzzle.

I am scared - not gonna lie. For years I have been dealing with Crohn's and it's joys....this is out of left field unknown territory for me. Until I knew some specifics and saw the Liver doc I didn't wanna publicly say anything. Thank you for all the concern, questions, and well wishes. I will keep updated - the next step looks to be a liver biopsy tomorrow or the next day.

HUGS to everyone - and all my best,
Jason

UPDATE 6:34pm
Literally right after I posted this the Liver doc came in. I have Hepatitis B - I am pretty shattered right now. Liver biopsy tomorrow plus endoscopy. Plus talking about treatments. I just right now am scared ...but I know I have incredible people in my life.

a LONG overdue update!

2010-08-02T15:15:00.001-04:00

It has been quite some time since I wrote a blog post. A lot of it has to do with I've been feeling really rather rough with tummy pain, nausea, fatigue, and all the joys of Crohn's. I have been progressively getting worse health wise since the spring.

I saw a GI and he ran a small bowel follow-through (via NG) which showed narrowing/strictures. Surgery was discussed, but the doctors had to do studies first to try and narrow down where to go/cut. They scheduled a colonoscopy but I could not keep the prep down, therefore it didn't work. The second colonoscopy they had my due the prep over a week! I was on low residue + miralax for a few days, then liquids and miralax, finished by nothing and miralax. They were able to do the scope thankfully and that was over on June 11th.

I thought finally they have what they need - surgery will be scheduled - wrong. I've been on pain management for 5yrs. This entails 30mgs of Oxycontin every 12hrs (60mgs a day). The surgeon was concerned with being able to keep my pain under control during recovery, so she wanted to set up a plan with my physician who handles the pain management...more waiting. The surgeon and my physician came up with an aftercare plan that is safe; now all I needed was pre-op physical for surgery scheduled on August 4th!

I go for the physical and fill out the forms. I list medications - and the part where it says medicines during the last 30 days. I recently had a prostate infection, and what turned out to be an abdominal abscess. I was put on the antibiotic Cipro so I listed it on the form. The pre-op doctor started asking me about the infections, and I had a low grade fever of 99.9f. She explained to me she could not clear me for surgery until my blood work returned, and my white blood cell count was known. The blood work was sent for stat testing - and sure enough my white blood cell count was up around 20 thousand; a normal count is 5-10 thousand. They put me back on Cipro and I had to return this morning to have my white blood cell recounted - it dropped a whopping 1 thousand! Surgery on the 4th was canceled, and I the antibiotic Flagyl was added to the Cipro.

I spoke to the surgeon today and she explained why it important to have my white blood cell count lower. After surgery my white blood cell count is going to naturally go up since it is going to have lots of areas to "fix". If my cell count is already high - even HIGHER could be dangerous. This helped in the disappointment I felt knowing that Wed's surgery was not a reality - they just want the best for me. My surgery has been rescheduled for Aug 23rd, 2010! It is NOT THAT long away ....but I just want it over already.

OK I am done! I appreciate everyone's comments, support, and friendship more then anyone knows. I truly hope that everyone is doing well. All my best to everyone - Jason

This is what's going on.....

2010-05-01T11:58:00.000-04:00

Well haven't blogged in a while - not since seeing my old doctor again, and the discovery of Akathisia. Having seen my old doctor who performed my major bowel resection in 2000 was fantastic. She ordered a small bowel follow through on March 11th (that was fun).

The test requires drinking 3 12oz bottles of thick barium, while having standard x-rays and live x-rays highlighting issues in the bowel. I have issues drinking the barium oral as I always vomit it. This time the barium was administered via NG tube (tube down the nose into the stomach) in hopes of getting in in and keeping it down. The first 12oz went down - they x-rayed and waited 15-20mins to administer the next 12oz. The next bottle went down but didn't stay down - lost about 13oz. Luckily they were still able to see a fair amount of barium in my bowel. Finally the last bottle was administered and stayed down. The tests lasts until the x-rays show the barium as traveled through the small intestines and gets to the beginning of the colon. It took 4.5hrs for it to reach my colon which is a very long time. I now had to wait until April 23rd to see my doctor again to discuss the results and what to do next.

After seeing the doctor and discussing the results which showed narrowing it was decided it would be a good idea to have the GI scope me and then some exploratory surgery. My doctor personally called the GI I had seen once who informed me my doctor was back in town. They decided working as a team would be the best situation - which is great. This past week the GI personally called me and he assured me that they were going to take care of me, and work on getting my quality of life where it should be.

I can not tell you how much of a relief it was that he personally called me, and the conversation we had. I felt such a relief and joy speaking with him ...that finally making progress - moving ahead and proactive! I get scoped on May 7th and will know more after that. I appreciate everyone's concern, support, advice, and shoulders. I am in pretty good spirits - focusing on these awesome doctors working together and for a light in the tunnel again. I also can not express enough how much CDSN helps keep my spirits up. Waking up and knowing I am a part of such an incredible community is truly cathartic; thank you.

All my best to all,
Jason

The Good and The Bad

2010-02-21T21:43:00.001-05:00

Doctor was good and bad ...
GOOD in was GREAT to see a doc who I LOVE and who remembered me after ELEVEN YEARS ...she is remarkable. She listened to me ...and fully agrees SOMETHING is going on and she wants to find out what. She ordered a CT entrogrpahy (which 2 other gi's wanted to do - I told them I vomit the contrast if it is oral and all of them said no choice) she thought for a sec and asked if a small NG tube and have the contrast done that way - and I was like YES!!!!!!!!!! I don't mind NG tubes esp. if it will get ALL the contrast in my gut so they can get a GOOD view of what is going on ...plus CT entogrpahy is one of the best ways to get an image of the small bowel (they don't do the pill cam with crohn's patients cause if it gets stuck THEY HAVE TO GO IN and get it ...) She is also doing an endoscopy. She did a rectal exam also - something the last two GI docs I had seen NEVER DID and found a new fistula and essentially a tear/open wound which I had NO IDEA I HAD cause I can't see my ass ...and I'm on pain management so I didn't feel it. Explains where the bleeding was coming from ... I feel so good in her hands - and feel like something finally is going to come of this.
OK THE BAD -
I have been on pain management for about 5yrs now - plus I am nauseous EVERY DAY ...not a matter of if I am nauseous it is how bad is it. The combo made it worse ...so docs prescribed me phenergan - and kept increasing till I was taking 100mgs a day for almost THREE YEARS NOW. I have been experiencing hand tremors at first ...and then noticed just was getting restless. It progressed over the years the doctors said it was anxiety...even though what I was experiencing was nothing like an anxiety attack ...never felt like I was going to have a heart attack chest pressure or shortness of breath. My sleeping got really bad - as the restless feeling progressed. Eventually it got so bad I was barely sleeping - my legs were always moving and restless...sometimes my arms and neck. Was having twitches and spasms sometimes - ESP when I had to go to the ER and they would give me IV Phenergan, Reglan, or Compazine. AGAIN they thought it was anxiety ...and tried giving me adavain but never helped. It NEVER hurts was more of a feeling of energy building up in my arms, legs, and neck and if I didn't move them it would just get worse - and sometimes like my head would jerk to the left ..or my leg .. or arm. I spoke to a wonderful new member who shared with me HER experience with Phenergan and restlessness. Looked into it and sure enough it and sure enough there is absolutely a connection between Phenergan, Reglan, and Compazine. I talked to my surgeon about it - and she knew of it ...and agreed that phenergan is not a good drug, and she feels not even good for managing nausea - ZOFRAN is the way to go.

I have nerve damage - as basically my nerves have been firing non stop and they are fried. The question now is it permanent? I am off phenergan and on zofran now. The Klonopin has helped a great deal with the restlessness...for the first time in almost three years I feel calm. Saturday and Sunday have been amazing for me. I have slept almost 16hrs now – when in the last week I was lucky to get that. I actually feel GOOD!!!

It is ridiculous what exhaustion can do to someone. I didn’t even realize how tired I was since it had been going on for years now. That is what has been going on.... I am so relieved to finally have a doc who is willing to help me - especially one who did my surgery and has SEEN inside me and removed the damage. I have hope - it is wonderful Regardless of what happens - I FEEL pretty good right now and embracing that.

My Thoughts - An Update

2010-02-04T01:50:00.004-05:00

Hi! I haven't written a blog in a few weeks now. I've been preparing gathering medical records and what not for my appointment with my new GI on Feb 8th. I am optimistic about seeing him, as he comes highly recommended from my counselor/social worker.

My health has been it's ever joyful Crohn's joy - HA. I have to say though, being off Humira has actually helped me in feeling back to "normal" for me. The dehydration issues I was having are gone - as is the insomnia. Dehydration was causing other fun complications - which have all passed. I am always feel run down, but on Humira I felt even more so. I am a firm believer though that just because a medicine doesn't work for ONE person - doesn't mean it's a bad medicine. For all those taking Humira - I don't think it's a bad drug ...just wasn't right for me.

CDSN everyday amazes me! From the members and their stories, the content being shared - the pictures and videos, the support being offered from one member to the next. My hope for CDSN is becoming a reality - to aid people whose lives have been effected by Crohn's and to spread as much awareness possible for Crohn's Disease and IBD in general. I know I've said it many times, but truly I am so humbled by the feedback, comments, and response that CDSN has generated. There are MILLIONS of websites - I never imagined people would find and respond so positively...THANK YOU! People helping people...education...awareness ...that IS CDSN and it wouldn't be what it is w/o all the members.

As 2010 continues I hope to continue with my goals of helping and awareness also to end the question "What is Crohn's Disease?" THE WORLD WILL KNOW! I have some very simple ideas for spreading awareness - the first being a Crohn's Disease "Trending Topic" day on Twitter. I will of course update when more information is laid out.

CDSN has reached 341 members in just over 4 months on January 24th, 2010. Crohn's Disease Support Network - CDSN
The CDSN FaceBook Group has reached almost 225 members!
Lastly, the CDSN Twitter Account @CrohnsDiseaseSN is just about to cross 1000 members!

THANK YOU EVERYONE FOR ALL THE CROHN'S DISEASE SUPPORT, AWARENESS, AND TAKING THE TIME TO READ MY BLOG :)

OK - I will stop rambling now - All my best to everyone, Jason

Hope

2010-01-16T22:07:00.000-05:00

I want to thank everyone for all the amazing comments, and support on my last blog post. I was really upset from the doctor, and reaching out made all the difference.

Here is an update -

Something I did not share in the last blog was I agreed to have a CT Entography scan done on Tuesday Jan 12th 2010. I didn't share it, cause really didn't want to get my hopes up ....I am glad I didn't. I agreed to the CT cause of the information the doctor told me. I have had so many issues keeping contrast down in the past - and the scans have always been hard to read.

The GI on Thursday explained this to me about a CT Entogrpahy (something I had never heard of before).

"This is a new scan, something over the last 2 years. This scan there is NO oral contrast, it is all done IV over 1 hour." I was very excited over the prospect of getting a clear picture of the feet of small bowel that can be clearly scene otherwise (outside of the pill cam which she refused). I show up for the scan, and the nurse says "I'll be right back with the contrast". I stopped her, thinking she was wrong, and she proceeded to explain what a CT Entrogrpahy REALLY is - it involves drinking THREE bottles of oral contrast each one had to have been consumed WITHIN 15 minutes (I can't even drink an 8oz glass of water in 15mins). The nurse then proceeded to explain how a CT Entrography is WORSE then a CT scan contrast wise. I thanked the nurse for explaining the procedure, and canceled it.

My father came back to pick me up, and explained to him all of what happened, and he confirmed that the description the GI doc gave on Thursday was what I heard - wanted to make sure I didn't misunderstand anything.

I called my counselor immediately, as I was very frustrated. She called me back later in the day and had a wonderful conversation - not only did she 100% agree that what is happening is in NO WAY psychological, and that I should never return to that GI again. Amazingly she also referred me to the GI she uses through the University of Cincinnati, and she would be more then happy to speak with him confirming that this is physical, and not mental - SUCH A RELIEF!!!!!!! I called and made an appointment, and see him on Feb 8th, 2010 the earliest appointment he had (this is kinda a good sign I think as this is my mothers birthday - she passed in 2001) something my father also agreed on.

It is so nice to know I have incredible support locally, and an option of seeing a new GI. The prospect of traveling up to the Mayo Clinic, or check out Cleveland Clinic was somewhat overwhelming. Thanks again everyone for all the incredible comments, and sharing your history of the same experiences. It meant so much to know that I was not alone, and others (unfortunately) have dealt with this. Hopefully through CDSN we can change this, so patients in the future never have to experience such ordeals!!!

Where do I even begin...

2010-01-09T15:57:00.001-05:00

I have been a little withdrawn and distant the last couple of days. Quite a few people even inquired as to what is going on.

Here is some history real fast. I was diagnosed with Crohn's in 1999 after YEARS of being sick and doctors telling me it was in my head. When I was ten years old my appendix (what was left of it) was removed - the doctors thought this was the underlying issue. I was relatively "healthy" until I was sixteen years old, when I had a flare up that lasted a month in which I lost 20lbs. The flare up passed, and I was "healthy" again until I was nineteen.

When I was nineteen - in June of 1990, I became extremely ill. I developed a rectal abscess, and had extreme pain, nausea and fatigue. My general physician sent me for a small bowel follow through and this showed strictures. I saw my GI in summer of 1999. I had colonoscopies and endoscopies all showed Crohn's damage. They did multiple biopsies do even confirm that I had the Crohn's gene.

I struggled for years and had a bowel resection in May of 2000. Two weeks before the bowel resection to get a better idea of the full extent of the damage I had a CT Scan and another small bowel follow through. BOTH essentially didn't show ANY Crohn's. I was having extreme pain and nausea. My GI tried to talk me out of the resection surgery; he didn't think it was necessary. With all the pain I was having, and talking with the surgeon and my parents we went ahead with the resection - THANKFULLY. What the surgeon removed was strictures and damage that was far beyond what the GI docs ever imagined. I had diseased bowel that was dated to be 14yrs old. The pathologist had such issues even cutting the bowel as it was so dead and rubbery. I was a walking time bomb for a bowel perforation. After that surgery I fired my GI doc ( a well known doc in a huge practice in my area) and searched for others. I had multiple abscesses from fistulas - we're talking about 18 -20 I honestly have lost track and every single one had to be cut and drained. In 2004 I had major rectal/anal surgery to remove the fistulas causing them, and scar tissue from Crohn's. In 2005 I had to have my umbilical tract removed because it was leaking fluid from my bowel from a TINY fistula.

I wound up going to the Mayo Clinic in Rochester, MN - THE BEST PLACE EVER! They clearly saw what was going on, and wanted me to start Humira as soon as possible - which was a problem. The FDA had not yet approved Humira for Crohn's patients, so my insurance would not pay for it. Three years later I return to Mayo - they want me on Humira still. It is agreed that a GI in Cincinnati would manage me, while contacting the Mayo Clinic and consulting with them. I tried a couple of GI's, and they all wanted to run their own tests and etc and would not work with the Mayo Clinic. I went to two private GI's and one was a quack, the other didn't feel comfortable treating me with the acute Crohn's I have (which I can respect). I finally found a GI who was willing to start me on Humira and consult with Mayo - this was May 2009.

I started Humira and have had a lot of issues with it. I've had a lot of dehydration issues, extreme fatigue, and I have virtually NO immune system. I have already dealt with 3 staph infections, all required antibiotics to heal. I had to go off the Humira every single time, since the antibiotic I was taking not a good idea to mix with the Humira.

My dad and I agreed that I needed to check in with my local GI and express what is going on, and how I feel. I had an appointment on Thursday the 9th, 2010. .... This is where things go bad.

The GI came in, and looked at my blood work from my last hospital admittance from November and then proceeded to tell my father and I that she thinks everything is psychological ..............................

I was devastated. The GI proceeded to go on that since I'm not anemic that she doesn't think it's the Crohn's making me sick, and that it is all psychological. She looked at me and even said, "from looking at you I can tell it's psychological". What she didn't give me a chance to say was I had been up since 5:30am extremely nauseous...AND that the symptoms make me feel depressed NOT THE OTHER WAY AROUND. ALL I am asking for is a better quality of life - NOTHING MORE (and for me that would be being healthy enough to work and support myself - that's it!!!). I asked her if she had my records from my resection in 2000 and she said no. I tried to explain what happened, and asked if she wanted ME to get the records for her - to which she said NO as it could get stuck in my small intestines. My father asked if she wanted me to stay on Humira ..which she said yes. I asked if we could do the pill cam - she said NO. I have 2 big problems with those two things. If she thinks it is psychological then WHY would I continue a drug for severe Crohn's Disease? Why would a pill cam get stuck in my small intestines if it is is psychological? Left the doctor feeling completely devastated and angry. In a way I felt like a child again, sitting here hearing another doctor say "It's in your head" - I never knew psych issues could cause someone to develop a DOUBLE bowel obstruction that caused a FULL digestive reversal ( I was vomiting stool).

NOW I again face another TWENTY-FOUR HOUR drive (round trip) back to the Mayo Clinic to figure out what to do now. I am considering checking out the Cleveland Clinic as it is a ten hour drive (round trip).

I was in a really foul mood on Thursday, and yesterday I was in better spirits ..but today just not a good day so far. I figured I'd share what was going on .... as CDSN is one of the few great things in my life right now.

Welcome to 2010

2010-01-01T01:30:00.003-05:00

Happy New Year Everyone!!! As I right this post it is currently 1:30am est Jan 1st, 2010. How amazing that another decade as come and gone.

For many years since 1999, when the Crohn's Disease got really bad, I couldn't fathom where I'd be 11 years later. Now here I am 11 years later, and wow what a roller coaster it's been. From being diagnosed, to my first bowel resection, living in Chicago, the death of my mother, more surgery, disability, life in limbo.

When I created the Crohn's Disease Support Network (CDSN) www.CrohnsDiseaseSN.com I knew nothing about web design. I created CDSN on 9.24.09 and I am shocked and humbled that there are currently 241 members. I've always ever wanted to help people - I was going to go to university for social work. I feel like for the first time I've been given the opportunity and it feels amazing...truly cathartic.

I have met a ton of people now with Crohn's Disease, and it has been amazing to talk to people who experience the same issues I go through. It's ironic for years the last thing I wanted was support. Then when I did, I searched and never really found anything that resonated with me. Now I have great support, and able to offer it to others.

I really hope that things continue to head in the direction they are going regarding CDSN - my health that is something that needs to be worked on still. I still am having a hard time. It seems since starting Humira that I've had more issues then before. It is unfortunate, as I had high hopes for it; not the end of the road yet though. I still have some treatments I haven't tried, like Imuran and LDN.

Thank you everyone who takes the time to read this blog, the members of CDSN, and all my friends. I can't wait to see what is in store for 2010. The one resolution I made this New Year is to spread as much awareness as possible - the END of "What is Crohn's Disease?" A disease silent for too long.

My Thoughts....

2009-12-21T10:50:00.003-05:00

Over the last week I have come across some truly shocking stories. I've posted most of them below, but there is even one more. Another woman on Twitter lost her cousin when he was 25 to Crohn's Disease last year. This is just another example of how VITAL Crohn's Disease needs awareness.

I just hope that sooner than later that a cure is found. It is starting to become somewhat alarming at how many people are being diagnosed, and living with Crohn's Disease - this needs to be stopped!

Screen Writer of Alien and Total Recall Dan O'Bannon Has Died of Crohn's

2009-12-21T10:49:00.000-05:00

This information is from The New York Times via:
http://www.nytimes.com/2009/12/21/movies/21obannon.html

Dan O’Bannon, whose screenplays for “Alien,” “Total Recall,” “The Return of the Living Dead” and other films made him a cult hero among science fiction aficionados, died on Thursday in Santa Monica, Calif. He was 63.

The Writers Guild of America confirmed his death. The cause was Crohn’s disease, a chronic gastrointestinal disorder that Mr. O’Bannon endured for 30 years, his wife, Diane, told The Los Angeles Times.

Mr. O’Bannon had an early start as a screenwriter when he and the director John Carpenter, students at the time at the University of Southern California film school, wrote the low-budget film “Dark Star,” which was released as a feature in 1974.

After working as a computer animator for the director George Lucas on “Star Wars” and trying, unsuccessfully, to develop a film based on the Frank Herbert novel “Dune,” Mr. O’Bannon created the story of “Alien” with the screenwriter Ronald Shusett and wrote the screenplay on his own.

The film, directed by Ridley Scott and starring Sigourney Weaver, is about a spaceship with a vicious monster loose onboard. (The creature begins as a parasite that explodes from a crew member’s chest.) It became a box office hit, a classic of science fiction and horror, and the progenitor of a lucrative Hollywood franchise, with its several sequels.

“I love gore films and I grew up with ’50s monster movies,” Mr. O’Bannon told the journal Cinefantastique in 1979, speaking of the film’s origins. “The idea for the monster in ‘Alien’ originally came from a stomach ache I had.”

In 1985 Mr. O’Bannon wrote and directed “The Return of the Living Dead,” part homage to the George Romero zombie film “Night of the Living dead” and part genre spoof. In 1990 he teamed with Mr. Shusett again, among others, to write “Total Recall,” a violent, futuristic tale set partly on Earth and partly on Mars and based on a short story by Philip K. Dick. It starred Arnold Schwarzenegger and Sharon Stone.

Daniel Thomas O’Bannon was born in St. Louis on Sept. 30, 1946. He attended Washington University in St. Louis and MacMurray College in Abilene, Tex., before earning an M.F.A. from U.S.C.

His other screenwriting credits include “Blue Thunder” (1983); “Lifeforce” (1985) and “Invaders From Mars” (1986), both directed by Tobe Hooper (who directed “The Texas Chain Saw Massacre” and “Poltergeist”); “Screamers” (1995); and “Bleeders” (1997).

He also directed “The Resurrected” (1992), based on a story by H. P. Lovecraft, whom Mr. O’Bannon called “the greatest horror writer who ever lived.”

Besides his wife, he is survived by a son, Adam.

Condolences go out to the family - Dan will live on in the hearts and memories of many people, as well as an incredible legacy.

R.I.P Joshua Coleman

2009-12-21T10:48:00.001-05:00

I was on twitter this afternoon, and came across a user who had lost his good friends from Crohn's Disease. I asked him if I could share his friends story on CDSN, and he said yes. In memory of Joshua Coleman (this exert is from http://nerdyjustin.wordpress.com/2009/12/19/r-i-p-joshua-coleman-an...

early this morning, a friend of mine who is also living with Crohn's Disease passed away in the hospital. he had his wife and brother with him at the time. he has been living with Crohn's for 14 years and had made great progress in treatment. he has been a friend of mine for almost a year now, and was a great support when I needed it. he was doing so well, even got off of a few medications and was actually gaining weight. but over the past week he started having a lot of pain and became ill. I talked to him Wednesday while he was laying in his bed waiting for his wife to come home early from work to help him. he made a few jokes and said it’s just normal, which I agree it is from time to time. but he apparently was taken to the e.r. yesterday evening where he was emitted and passed away 7 hours later. he was a great guy and was always optimistic. I met him on a medical forum almost a year ago when I was whining about my own Crohn's problems and we became friends instantly. he even sent be a bottle of Protonix last February because I ran out and had no insurance. he was in much better condition than I was. he only had one major surgery from Crohn's and no longer needed infusions. but this came up out of no where and got him. so it doesn’t matter how well we treat it, doesn’t matter if we go into remission or get slightly more pain free, it can jump up and get us whenever it feels like it. it’s fucking Christmas and now his family has to deal with his loss. he was doing so much better than he was last year, and had planned on being there and able to eat Christmas dinner with his family. there is now an empty chair at the table because of this stupid disease. I’m more angry than upset right now, I just can’t believe it. I’ve never lost anyone from suffering from the same disease as I am and it’s really a bitch slap in the face, especially since I am not even at 50% efficiency as he was. all i can do right now is pray for his family. I need a cigarette and a drink. who cares if it’s bad for me, I really don’t care.

Thank You Justin MaHaffey for allowing me to post this.

Hope for Heather

2009-12-21T10:46:00.000-05:00

I was on twitter last week, and met @FriedaW Her daughter at the age of 24 died last year of Colon Cancer after living with Crohn's Disease for ten years. Learn more about Heather at http://www.hopeforheather.org and her blog/memorial at http://www.hopeforheather.com/ Her story and blog is very powerful. An unfortunate example of how vital Crohn's Disease awareness is.

The Kindness of People....

2009-12-15T12:08:00.001-05:00

I hope everyone is doing well during this holiday season! I am writing a quick post to just comment on how CDSN has been life changing for me.

CDSN has not only started an amazing new chapter in my life, for the first time in many years - but I have also met incredible people who I am honored to call friends.

Being on disability, and not leaving the house much it can be hard to make new friends. I love my friends, they are wonderful; unfortunately most of them live far from me.

This holiday season, I have received some truly remarkable acts of kindness that I am amazingly grateful for. Thank you everyone for making CDSN everything it is, for helping spread Crohn's and other IBD related awareness, and lastly for CDSN.

Best Wishes and Happy Holidays,
Jason

LeMorning Show on Twitter

2009-12-08T10:56:00.002-05:00

Hello everyone! I have not blogged in a while, forgive me? I have been busy with Crohn's Disease Support Network (CDSN) www.CrohnsDiseaseSN.com Things health wise have been OK. After leaving the hospital few weeks ago, I've since restarted Humira. I haven't been on it long enough again to notice any signs. I have been very tired, but taking it easy.

Yesterday morning I had an incredibly unique experience. There is a Twitter "Show/broadcast" that is kinda like The View. They are @LeMorning recommend following them if on Twitter! They are on from Gam EASTERN until 9am WESTERN - 6 FULL HOURS! You can join in on the show also by visiting: http://www.heralddeparis.com/ If you scroll down to the middle of the page, on the right hand side is the scrolling show.

This morning I received a tweet asking to describe what Crohn's Disease is. It was incredible to be able to spread awareness for Crohn's Disease!!! Below is a copy of the discussion.

Best Wishes,

Jason Leitman - CDSN Creator

Beginning of discussion:

(cc) Mel, my sister has crohns...it's pretty nasty. Here's a hint: if someone poops within minutes of eating and reeks of death..get checked

mel) Can you give us & listeners a bit of info on what #Crohns & #IBD is & symptoms?

RT @CrohnsDiseaseSN @LeMorningShow #Crohns cn effect ENTIRE GI tract from mouth-anus& affects Skin, Joints, & Eyes-children can stunt growth

RT @CrohnsDiseaseSN @LeMorningShow Crohn's is an Autoimmune Inflammatory Bowel Disease causes Protein TNF (tumor necrosis factor) 2 build up

RT @CrohnsDiseaseSN @LeMorningShow EVERYONE has TNF - people with Crohn's don't naturally dispel it, causing immune system 2 attack GI tract.

(mel) What is the difference between #Crohns & #IBD?

RT @CrohnsDiseaseSN @LeMorningShow Nausea, Abdominal Pain, Fatigue, Weight Loss, Diarrhea, bloody stools, appetite loss, anemia. It varies.

(mel)RT @CrohnsDiseaseSN @LeMorningShow does that help? <-Yes! I know more about #Crohns than when I arrived on #LeMorningShow today! #learn

(mel) Thank for informing/teaching/sharing with us @CrohnsDiseaseSN! #crohns #IBD #learn

RT @Jason31480 @LeMorningShow I've been living w/ #Crohns 24 yrs -10 diagnosed no remission & been on disability now since 05 from #Crohns

RT @CrohnsDiseaseSN @LeMorningShow and a blog about my experience with #Crohns http://jasonandcrohnsdisease.blogspot.com/ #CDSN

RT @Jason31480 @LeMorningShow thx again 4 tkng the time - it means a lot! I've started a letter campaign 2 @DrOz 2 run a#Crohns #IBD show

(mel) T'was a great time here this fine rainy (in LA) Monday, a special shout to @Jason31480 for educating us about #CrohnsDisease, TY!

END.

Thanks everyone for all the support and encouragement!

Thank You!

2009-11-19T15:40:00.001-05:00

Just wanted to leave a quick thank you to everyone for their kind words, and healing thoughts. I have to say, I was very touched by the concern when I was in the hospital. I am truly grateful for all the friends I've made since embarking on this exciting new chapter of my life. I hope this post finds everyone in good health - Jason

Fun Times At Bethesda North...

2009-11-19T15:39:00.000-05:00

I spent the night, and most of the afternoon admitted at Bethesda North Hospital. I was feeling sick for about 3 days, and became dehydrated - with a small bowel obstruction too.

I am doing much better, the hospital took good care of me! I just wanted to leave a quick post to thank everyone for their concern; It was very touching. I appreciate the friends I've made on here more than any of you know! I am going to lye down, and watch some TV.

I hope everyone is well, and I will be more active over the next couple of days.

-Jason

Sunday 11.15.2009 Exciting Title I Know!

2009-11-19T15:38:00.000-05:00

A Happy Halloween....

2009-11-02T00:17:00.001-05:00

Hello everyone! Just want to first off thank everyone for being apart of CDSN! Everyone's kindness, words of encouragement, and rallying have really helped more than any of you will ever know. I am also excited about the domain I purchased going into effect. http://www.CrohnsDiseaseSN.com I bought the domain through go-daddy woo hoo! Just another step in helping the network grow, to help out as many people as possible. Remember also, tweeters #CDSN hash tag and @CrohnsDiseaseSN for the network! Thanks!!!

I had an alright week, recovering from bad flare up last week. I took it easy pretty much all week. Today was nice, I got to go over to my sisters house. and visit with my nephews and her. It was so wonderful to see my youngest Nephew as I have not seen him since he was 2wks old; he's 7mos old now. I posted some pics, in his adorable little skeleton outfit. It was so nice to get out of the house, and have some fun. Being on the Humira my immune system is compromised. I've already had to be pulled off twice due to infection. My GI basically told be to quarantine myself - so I haven't really seen a lot of people lately (another reason I am so grateful for CDSN as it's an outlet for me).

I saw my GI on Monday, and she feels everything should stay with Humira. I don't know if it is working as well as when I first started in May, but I will continue. I hope everyone had a decent as possible week, and a happy Halloween!

Jason 10-31-09

I love you Mom.

2009-10-24T15:12:00.003-04:00

Hello everyone!
Today is the 8yr anniversary of the passing of my mother. She died of lung cancer in 2001, 3 days after my sisters wedding. It was very sudden, for which I am grateful she did not suffer. I've decided through encouragement from my friend Tommy to share some memories of her today.

Both of my parents were born and raised in The Bronx, NY. They moved to Cincinnati in the 1970's, and my father lost most of his accent but my mother never did. Her voice was always so thick with a NY accent it was recognizable to anyone who heard it. She was a force of nature, a strong, proud woman.

I was her "baby" needless to say we were close. I have many memories of her playing Bingo- something she loved to do every Sunday. Sometimes she would let me go, and we would always go through the Wendy's drive-thru. She would always get a Jr Bacon Cheeseburger and a Diet Coke. She also enjoyed playing Mahjong with her friends at the house, as well as Bridge and Poker. She also enjoyed going to the riverboats and playing the 5 cent slot machines with her friends.

She also enjoyed talking!!!! Whether it be on the phone or in person, she could talk for hours. When I was in middle school, she went back to work. She started in Gift Wrapping for McAlpins a department store now Dillards. After a few years she moved up to working in the main cashier office. Sometimes she would have to make announcements over the PA and everyone always knew it was her because of her distinctive voice...something I miss hearing. My friends LOVED my mother, got a big kick out of her.

I know she is watching over me, and even though it's been eight years and I can think about her and smile and laugh...I still miss her dearly. Through memories she will live on forever.

Fredda Leitman Feb 8th 1942-Oct 24th 2001 R.I.P

This past week...

2009-10-23T11:24:00.002-04:00

Hello everyone! Just wanted to touch base, as I haven't been on the network much the last few days. I am having a flare up that is kicking my butt (no pun intended hahah). Haven't been sleeping well, on top of increased nausea and pain. I go see my GI on Monday, but I hope to feel somewhat better by than. Wanted to thank everyone for all their contributions, kindness, and compassion. I hope everyone else is doing well, with their chins up! -Jason

Update:
Been asleep most of the day. Woke up again at around 8pm, and still feeling like crap. If I don't feel better will have to be admitted to the hospital. Will update with the network! I hope to not have to go...

I woke up this morning and I feel pretty good! The last few mornings have been MISERABLE, so what a wonderful change. I am going to take it easy, let my body recoup, but pretty sure the worst is over. I look forward to a nice weekend, and the upcoming week. Halloween is always my favorite time of the year.

On a side note - Tomorrow is my mothers 8 year anniversary since she passed. I can think about her and smile again, but she is greatly missed. Love you mom!

I'm back!

2009-10-09T14:00:00.002-04:00

To everyone following my blog, first off THANK YOU! Second, I'm sorry I've been neglecting. I've been putting most of my focus into The Crohn's Disease Support Network (CDSN), and haven't had a chance to blog.

Things have been alright for the most part. Restarted Humira 2 weeks ago. Last week was great. On Sat Oct 3rd went to a TINY amusement park with my 5yr old nephew, my father and his girlfriend. Had a wonderful time, bonding with him and riding the rides.

Crohn's wise, the Humira has decreased my nausea and pain, but my appetite has become zilch. There are days where I will just plain forget to eat. Thanks to wonderful friends, I'll get a reminder..but some days I will never get hungry. It's my bodies defense mechanism. It knows ingesting food can cause symptoms to worsen. This is a big thing with Crohn's patients. Between nausea lack of appetiy e and malnourishment - I can blink and lose 2lbs. The doctor had me change from Ensure to Ensure PLUS to help maintain healthy weight. It is also CHALK FULL of nutrients I can't ingest any other way.

Thanks to everyone who is continuing to follow my journey with Crohn's, and supporting the CDSN! I am truly amazed and humbled that in just two weeks almost 100 members on CDSN. Keep spreading the word!

Hope everyone has a banging healthy weekend!

-Jason

For Dan and his Wife...

2009-10-06T01:54:00.002-04:00

I am sorry to hear about your wife. I created an online Support Network at http://crohnsdiseasesupport.ning.com/ 8 days old and already over 58 people. It is for people living with Crohn's AND their FAMILY AND FRIENDS. There are some truly incredible people on there.

Doctor: I see the WONDERFUL Dr Maritza Palusiak. She has 2 offices one in downtown Cinci and one north JUST off 275 where it crosses with 71. The number is 513-794-5600

I appreciate you taking the time to read my blog, and spread awareness by educating yourself. I know first hand it is hard to see someone you love suffer. That is why http://www.CrohnsDiseaseSN.com is for people living with Crohn's, family and friends.

I wish your wife the best of luck. If either of you have any questions do not hesitate to ask...ANYTHING I have no shame when it comes to Crohn's Disease anymore.

I hope this helps.
Jason

UPDATE:
DAN CHECK THIS EVENT OUT http://www.CrohnsDiseaseSN.com/events/understanding-inflammatory I THINK IT WILL BE HELPFUL FOR YOUR WIFE AND YOURSELF :)

I'm Sorry!

2009-10-02T15:18:00.002-04:00

I have TOTALLY neglected my blog!!!! I've been focusing on the Support/Social Network http://crohnsdiseasesupport.ning.com/ which is growing WONDERFULLY! I am extremely excited at how it is progressing.

ANYWAYS....Crohn's wise I've had a REALLY good week. The Humira is definitely kicking in again, and my symptoms have gone from intolerable to tolerable! I've actually been able to get out of the house to run errands, visit friends!..I even CLEANED MY HOUSE! Haven't felt good enough to do a proper clean in awhile. Had my weekly check up with my GI yesterday 10.1.09. She is very happy with everything, blood work looks good.

I am pretty worn out right now, been running around again today. I am going to be kind to my body and take a nap. Thank you to everyone who is supportive and helping spread awareness for Crohn's Disease AND http://crohnsdiseasesupport.ning.com/

-Jason

A good week so far!

2009-09-29T21:03:00.002-04:00

I feel like I've been neglecting my blog! As I stated earlier, I resumed treatment this Saturday. It is starting to kick back in. Today was a great day, I actually woke up and had some energy. My pain and nausea were present, but diminished and extremely tolerable. I was able to run errands from 11:30am-4pm. I can not remember the last time I had a day like today. :)

I am BEYOND thrilled that the social/support network I created at http://crohnsdiseasesupport.ning.com/ is thriving. 4 days and 31 members!!! If one person feels like they have a place to turn, and don't feel alone then the network is working :)

Alright, I had a great but LONG day...going to call it an early night.

-Jason

You shall be missed...

2009-09-27T13:14:00.003-04:00

Today is somewhat somber. My ex (who is a good friend) called me this morning to let me know his Grandmother had passed away. She was an incredible woman! Over the almost three years I got to know her, she was incredibly kind, smart, funny, and caring. I'll be attending the funeral; not sure when it is.

Crohn's wise, I am doing really good today. The partial obstruction and inflammation have completely subsided. I still have a stiff neck from the Humira, but absolutely tolerable. I'm just going to take it easy today, and enjoy a nice lazy Sunday.

I hope everyone is well, and had a great weekend!

-Jason

Humira Resumes!

2009-09-26T14:33:00.003-04:00

I was VERY fortunate to be feeling tremendously better from the partial obstruction. I resumed treatment of Humira today as well. Humira is a TNF reduction medication. TNF is the protein that builds up in the body, causing the immune system to go hay-wire causing Crohn's Disease. With the Humira comes risks. I have to be extremely careful with infections and viruses. Humira weakens the immune system, leaving me vulnerable. Humira also, for me, gives me really bad body aches for about 12 hrs after injection. The first dosage, the loading dose, was 160mgs. I was pretty much bed ridden for a whole day. The body aches kinda feel like the flu, without any other fly symptoms. I will take them, over the Crohn's symptoms ANY DAY!

Just wanted to write a quick post. Supposed to hang out with a good friend today; always look forward to that. :) Hope everyone is having a marvelous weekend!

-Jason

PS
The Crohn's Disease Support/Social Network is going wonderfully! http://crohnsdiseasesupport.ning.com/ 15 members and counting!! I've been able to add: Live Chat, Qik, Notes, Blog Posts, and more! Anyone is welcome, the main goal is to create an online network that offers support and awareness for people living with Crohn's Disease, their FAMILIES and FRIENDS! =D

A NEW DAY..

2009-09-26T11:11:00.002-04:00

Yesterday turned out pretty alright. I actually had some solids WOO HOO. It had been a couple of days, but stomach needed the break. I woke up today feeling "normal"! Just regular, tolerable symptoms. Everyday I have pain, nausea, and fatigue. Certain days those symptoms become too much, and I can not tolerate them as easy. I hope to have a nice weekend! Hope the weather turns, and the rain moves away! I could sure use a trip out of the house. Hope everyone has a great weekend!!! Will blog more later...going to enjoy my reprieve :)

-Jason

JOY

2009-09-25T13:09:00.001-04:00

Don't want to curse myself...but I am feeling pretty alright! Not going to push it, but hopefully the rest of Friday will be like this =D Hope everyone else is having a good end of the week...and ready for a good weekend.

-Jason

Such a great father

2009-09-25T12:06:00.002-04:00

I am feeling much better...just been doing my breathing and taking it easy. My dad went to the doctor and picked up a prescription for me. Then he got it filled, and picked up some Gatorade and Ensure. Don't know what I'd do without him, I'm truly blessed.

Is it Thursday AGAIN?

2009-09-25T10:07:00.004-04:00

I woke up this morning, feeling as ill as I did yesterday morning. Last night I had such reprieve of symptoms, I thought I'd gotten through the worst. Woke up with horrible nausea again, and feel feverish. I just hope this doesn't escalate to having to go to the Hospital.

Something I can not express enough, is the unpredictability of Crohn's Disease. Within 5hrs can go from feeling fine, to misery. The disease can react to food, environment, or most of the time for me- out of nowhere. All I can do is breathing exercises, to try and reduce the nausea...and ride out the storm.

I still am pretty sure I have an area that is overly inflamed causing a backup, or partial obstruction. In the whim of feeling good last night, I had some toast; I should have stayed with liquids. Oh well...nothing I can do about it now. One hr at a time...one day at a time.

Hope everyone else is doing well, and getting ready for a fun weekend.

-Jason

11:16am Been doing breathing exercises- in through the nose slowly, than exhale out my mouth. Getting air out of the stomach can significantly improve nausea at times. It's helping, which I am grateful for.

.....End of the day

2009-09-24T22:12:00.003-04:00

Well, I am pretty sure I had a partial bowel obstruction today. Thankfully it has passed, and my body is already starting to feel better. It's incredible how fast symptoms can start to diminish after hours and hours of unpleasantness. I am also glad I didn't have to go to the ER and have them use an NG (a tube they stick down your nose into your stomach to suck out obstructions) had to be used. The last time I had an obstruction it was necessary, and amazingly unpleasant. Just glad to be feeling better, and to a new day tomorrow :)

Crohn's Disease Support Network!

2009-09-24T09:41:00.002-04:00

With the BRILLIANT idea from Brenda, I created a support network at ning.com! You can join at: http://crohnsdiseasesupport.ning.com/

Thanks again B for the idea!!!

-Jason

Early Morning...

2009-09-24T07:02:00.005-04:00

Oh the joys of Crohn's...Woke up about 5:30am tossing and turning. Eventually, the waves of nausea started. Supposed to go to the dentist today at 10:30am-Don't think that will be happening. That is one of the most frustrating aspects of Crohn's, is it's unpredictability of when it's going to hit me with wonderful waves of nausea and pain; mostly right now it's nausea. To control this, I try taking slow deep breathes, in through my nose and out through my mouth. Getting air out of the stomach can really help control the nausea. The sun is starting to rise...and all I want to do is go back to bed. Think it might be a very long day...

9am- Still awake...canceled dentist appointment. There is no way someone is going to be able to work in my mouth, without me getting sick. I have a bad gag reflex as is! I'm supposed to resume Humira treatment today; hopefully this will bring some reprieve. I hope everyone is having a good day. :) When feeling ill, support from friends and family help more than any medication.

3:38pm- Got some rest on the couch. Tossing and turning a lot, not sure why. Could be the frequent waking up and running to the bathroom. I had to cancel dentist, and all my other doctor check ups today. For the best though.... My GI also recommended I not inject Humira today, and wait till tomorrow. Looking forward to going back on treatment. I am VERY excited though over the new CROHN'S DISEASE SOCIAL NETWORK!!! =D The small things in life...I do love them.

The Journey Continues...

2009-09-22T21:51:00.008-04:00

First off, thanks to everyone who has taken the time to comment, send me feedback, or contact me. I really appreciate everything. My week is going alright. I am still rebounding from the last flare up.

Something I have been dealing with that is frustarting at the moment is a side effect from Humira- INSOMNIA!!! The fact that I've had to start, stop, start, and stop again, the insomnia hasn't had a chance to wear off really. I am set to inject this Thursday, Sept 24th. Here's hoping that I will be able to stay on the drug with no infections! (fingers crossed)

I've gotten a lot of questions about what diet is like for someone with Crohn's Disease. There is NO food that will CAUSE Crohn's Disease, but there are certainly foods that give it "ammunition". First off I barley have an appetite to begin with. Secondly eating in the morning is near impossible due to nausea, and my stomach "waking up". For me, the main goal is to eat foods that break down as naturally and easily as possible. This means NO ROUGHAGE! Foods like seeds, nuts, raw vegetables for example do not break down easily with anyone, let alone people with Crohn's Disease! Seeds and nuts can also be extremely painful as they pass through the intestines, nicking areas that are currently inflamed. (not a pleasant feeling in the least) It kinda feels like eating shards of glass, not that I've eaten glass, but I can imagine haha.

For people who still don't have a full understanding of what the damage Crohn's can do: Imagine the intestines as a tube. Then imagine Crohn's Disease attacking the inside of the tube; causing inflammation causing narrowing inside the tube. Over time this inflammation becomes permanent damage- called a stricture. A stricture is essentially scar tissue built up from repeat damage to the same area. Over time the damage starts as little ulcers, that usually bleed causing anemia and fatigue...then they become strictures. The surgery in 2000 I had, the bowel resection, removed strictures throughout my stomach. One was so narrow and damaged, the pathologist had to use a laser to cut into it.

OK back to food... the food can get stuck VERY easily in these areas of damage leading to pain, nausea, and fatigue and the worst a bowel obstruction with possible perforations. I personally have food allergies to nightshades - tomatoes, eggplants etc- therefore my diet is even less. Liquid nourishment is essential. The damage caused by Crohn's can lead to malnutrition. I drink TWO Ensure with high calcium daily. It is the easiest way of getting nutrients, without upsetting my stomach. Once the area is damaged to a stricture, it is essentially dead tissue. I had to majorly cut back on dairy in Jan/Feb 2008 due to a bowel obstruction that caused milk to rot inside me. This was absolutely disgusting WARNING, so I will keep it short. The obstruction somewhat reversed my digestive tract. I would burp and it would smell like flatulence...I would throw up and the taste is something I never want to experience again. Not sure if I can ever drink milk again. END WARNING.

Since I have no ilium or cecum also, I can not absorb certain B vitamins- esp B12. It is important for people who do not have an ilium or cecum to receive B-12 shots. Drink LOTS of water, double the amount of a normal person, and just be as kind to your gut as possible. I've given up alcohol, caffeine, nothing spicy or hot NO blood thinners or aspirin, and roughage. Like I said, it varies for every person. I have an acute case, so what I can or can not eat could be totally different for the next person. Really varies on damage, surgeries, and finding what fits. I highly recommend food journals! If you can find out what bothers you, and what doesn't is one huge step to helping yourself. Seeing a nutritionist can also be something helpful, and someone your doctor can recommend.

Again, I am so grateful for all the positive feedback I've received! It is an essential equation in keeping a positive attitude. I hope everyone is doing well, and look forward to more connections, questions, answers, and sharing my journey as it continues. :) Will write more soon.

-Jason

My Weekend

2009-09-20T11:44:00.002-04:00

Hello! It's been a weekend of up and down. Being on the tail end of a flare up, my body needs a few days after to recoup. I have received so many positive comments, and encouragements from so many people. I am truly grateful! Support like that is a huge part of the equation of keeping a positive attitude. I plan on taking all the comments I've received, and will absolutely address them very soon. Wanted to give a quick update, and express my gratitude. I hope everyone is having (had) a great weekend! More to come soon! -Jason

A little bit about my joruney so far....

2009-09-18T13:06:00.001-04:00

Well, since this is the beginning of my blog- There is probably some info as to how I got here.

I've have had Crohn's Disease since I was a child. Unfortunately, even less was known about Crohn's at the time- The doctors never thought to check. In 1990 I had to have emergency surgery to remove my appendix. The doctors thought for years this was the underlying issue. In reality, it turns out the Crohn's destroyed my appendix. I am fine until 1996, when doing a 1.5 mos trip in Israel I get very sick. I can not keep any food down, I have no appetite, and I lose 20lbs. Was seen my doctor, and given antibiotics. It turns out this was my first MAJOR Crohn's Disease flare up. (flare up is when the Crohn's Disease goes into hyper-active mode and is more aggressive for a period of time). I was virtually symptomless until May 1999. I literally woke up one day, and was exhausted. This continued for days, with the addition of a horrible stomach pain. My doctor sent me for tests. Finally, they found the answer- Crohn's Disease. After YEARS of always being sick, and some doctors telling my parents and myself that it was all in my head. FINALLY a diagnosis.

After my general physician diagnosed me, I was sent to a GI doctor. They immediately sent me to the hospital to lance an abscesses I didn't even know I had (more on that later). After recovering from what would be ONE out of over FIFTEEN abscesses, they started me on steroids and a medicine called Pentasa/Asacol. Very standard start of treatment for Crohn's. I was non-responsive, and the disease continued to spread. They added 6MP, a chemotherapy pill that I had to take every day. This brought about 3-4hrs of puking every morning...GOOD TIMES! After the 6mp they tried Methotrexate....another chemo this time injected subcu in my stomach. After Methotrexate, I was enrolled in the clinical studies for Remicade. (this was 2000). Remicade was amazing...but unfortunately the more I received it my body built up a tolerance. In June of 2000 I had my first major surgery- a bowel resection. Something my GI doctor did not want me to have. With the pain I was having, I knew SOMETHING was wrong. With the guidance of my parents and the surgeon, I proceeded. The surgery saved my life. The damage the surgeon found was enough to cause a bowel perforation. I was a walking time bomb. After coming out of the haze and recovery, I fired my GI doc who tried to talk me out of the surgery. They had to remove a total of 15" of my small intestines including my ilium and cecum. Also removed was 3" of my colon; I was fortunate to never have any bags installed.

After my resection I felt INCREDIBLE. For the FIRST time in my life, I truly knew what being "healthy" felt like. I had energy, no pain, I could depend on my body. Absolutely amazing!!!
This lasted a year. After my bowel resection they put me back on Remicade, with the hope the disease was weakened enough for it to work again- not the case. Out of frustration of nothing working, and being admitted to the Hospital upwards of 8 times a year for flare ups and abscesses I traveled to the Mayo Clinic in Rochester, MN ( about 11 hr drive from Cincinnati, where I live) At the Mayo Clinic they are AMAZING!!! They have an actual Crohn's Disease clinic, and some of the best doctors in the world. Following their advice, they wanted me to start the medicine Humira. PERFECT...WONDERFUL! Finally something new.... I go to get the Humira prescription filled and find out my insurance company won't cover it AT ALL because the FDA has only approved it for Rheumatoid Arthritis, and NOT Crohn's Disease. They start pain management on me, and wait for Humira to be approved THREE YEARS LATER in late 2006: The FDA approves Humira for Crohn's Disease. I contact the Mayo Clinic and since so much time had passed, I had to travel BACK to Rochester for evaluation. This time my father travels with me, and everything goes wonderful. Unfortunately I had to fight with my insurance company to get the Humira approved. The loading dose alone was over TEN THOUSAND DOLLARS. I was extremely fortunate (after weeks of research) to get it worked out to where I am blessed to pay nothing. I have been unable to work since 2004, so I depend on Social Security and an INCREDIBLE one of a kind father; he is truly a hero and I wouldn't want anyone else for a dad. I am very fortunate to have him in my life. Since I live 11hr car drive from The Mayo Clinic it was decided a doctor in Cincinnati would work with The Mayo Clinic in my treatment. After searching and searching for a doctor that was willing to work with The Mayo Clinic docs, I found an amazing doctor. With her help, I started Humira on May 28th, 2009.

Humira has been both a blessing...and a curse. It is a very powerful medication, that I am receiving at an aggressive dosage. The loading dose was 3x the normal dosage, 2nd 2x as strong, and then the last normal dosage; which is 40mgs every other week. The Humira comes in a pre-loaded pen, that I have to inject into my stomach. It couldn't be easier!! The Remicade had to be done through IV Infusion which took over 3hrs every 6 weeks. The first month goes wonderfully! By the end of the mos my symptoms were ACTUALLY decreasing! A reprieve finally....Feeling decent, I embrace this and wind up developing a staph infection. Pulled off the Humira for one month, to let my body properly heal with antibiotics. During this time I also became dehydrated and had what is called a hyper-cardiac reaction. My heart was beating very fast, whilst my pulse was very weak. After a night in the ER and lots of hydration, this was totally taken care of. I go back on the Humira for a month, and develop a sinus infection. 5 days of antibiotics and I have to skip another week of Humira. I was supposed to inject the Humira yesterday 9/17/09, but have to wait until 9/25/09.

OKAY! WOW that was a lot... I will continue to share my story, and fill in pieces as the blog grows. I just want to spread awareness for Crohn's to help find a cure. If anyone ever has ANY questions, I am not ashamed or embarrassed to discuss anything. Please feel free to comment or ask anything. Will continue to update later, and eventually get to a daily "live" journal of my journey.

To ANYONE who takes the time to read this, I truly am grateful.

-Jason

My First Entry

2009-09-18T01:36:00.001-04:00

Hello! My name is Jason. In this day and age I figured I'd start blogging. I am 29years old and live in Cincinnati, OH. I have suffered from Crohn's Disease since I was a child, but unfortunately was not diagnosed until age 19 in 1999. For anyone who doesn't know what Crohn's Disease is: An autoimmune disease where a protein (TNF) builds up in the body. Everyone has TNF, but people with Crohn's Disease do not reduce the TNF naturally. This causes a build up, leading to inflammation and damage throughout the entire digestive system- mouth all the way down. Wikipedia has a WONDERFUL page which can explain better then I ever could on here! http://en.wikipedia.org/wiki/Crohn%27s_Disease is their link. I have been on everything from prednisone to remicade. Currently I am on Humira, which is helping - but have had some setbacks. I've been on disability since 2004, and basically been in life limbo. I know I can't worry about what I can not control, and change what I can. Live one day at a time, and keep on fighting. It will never get the best of me..and I know it could always be worse.

I wish to spread as much awareness as possible. I truly feel the more people are educated, the better chance a cure can be researched and discovered. There is a non-profit The Crohn's Disease and Colitis Foundation of America (CCFA). They are amazing, and really worth looking into. http://www.ccfa.org/

Well I think that's all for now! Will keep updating....Anyone who has taken the time to read, Thank you!! I will keep writing, so check back soon :)

-Jason