Saw The Doctor Yesterday ...

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!

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

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!

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.....

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

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

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

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...

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

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.