It's been some time ...

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 ...

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 ...

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