Need opinions on J-pouch surgery, please

What would you do?
0
Stay on remicade and prednisone as needed - 0.0%
2
Get the surgery - 50.0%
2
Neither - 50.0%

 
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Christinamae1211
New Member


Date Joined Jun 2008
Total Posts : 1
   Posted 6/12/2008 4:54 PM (GMT -7)   
Hi all! I am a 24 year old female with Ulcerative Colitis and anemia. I was diagnosed with UC at age 13 and ever sense have been on and off different meds. This past year became extremely difficult for me, I was hospitalized with a horrible UC flare in October of 2007. (Side note, I have been on and off prednisone for years and as time goes on the side effects have gotten worse) I was given solumedrol, Asacol and was not allowed to take anything other than meds by mouth, I was given liquid nutrition through the IV. My doctor did a scope at that time and said that my entore colon was pretty bad and was pretty adiment about me looking into getting the J-pouch surgery. Due to the prednisone my colitis was controlled.

December of 07 right after Christmas I ended up with a horrible stomach bug which threw my UC into a flare again and had to be hospitalized. The presnisone had stopped working on its own. While in the hospital they ended up doing the same regimine as before adding remicade to the mix, only I have horrible veins so they gave me a PICC line. After a week my colitis got better, my doctor discharged me but before leaving the hospital they took out the PICC line and my arm clotted. I was diagnosed with a DVT in my right arm. I had to stay another week. After following up with my doctor he still said i could look into the surgery but we needed to get the clot thing situated. I was tested for all clotting disorders and all came back negative, however they need to keep upping my coumadin level, so I dont understand what is going on...anyways.. the doctor who performed the blood clotting tests said I could go off coumadin in July, he saw no reason for me to continue taking it but when I went to have my inr checked again they had to increase me 10 mg a day again, I dont understand how i can just go off it if they are insisting I am on a high dose and it has never been steady. I am mentioning all this clotting stuff because this has been a major fear of mine for years now. I have known people to go in and have a simple surgery and die right after due to clots.

Here is my dilema now, I am completely off steroids for the first time sense October of last year, I just finished my 6th remicade treatment. I can say the only side effects I have noticed while on it so far has been joint pain and weakness that comes and goes. I am also starting to develop upper respitory congestion but it is extremely minor. I receive remicade every 4 weeks, right before receiving my last dose which was last week I started to have some symptoms of a UC flare again, only going once or twice a day but there is some blood and soft stools. I ate nothing but soup and jello for 2 days and then had my remicade and it got better for a couple days. Now I am noticing the symptoms starting up again, I have been to the bathroom 3 times today, not diarreah but there is a small amount of blood.

I am wondering if the remicade is starting to become ineffective. I also just did some reading and some of the effects of remicade people have experienced are things I hope to never go through. I have thought more and more about the surgery. Has anyone had the surgery? Did it help or cause more problems? How about those on Remicade, do you feel it is worth it to continue it? Did you experience flares while on it? Doctors ask me all the time why I haven't just done the surgery yet considering I have hit the 10 year mark and my colon cancer risk is greater, the only thing holding me back is my fear of a clot or PE and the fact I have 3 young children I would hate to leave without a mother should the worst happen. What are your opinions on this?/ I need to talk to people who aren't doctors and who have experienced all these things! Thanks if you have read this far! God bless!

Post Edited By Moderator (Judilyn) : 6/12/2008 7:15:36 PM (GMT-6)


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/12/2008 6:15 PM (GMT -7)   

Welcome to HealingWell. I'm sorry to hear you're having such a difficult time. We do have a couple of people posting here who have had surgery, but you'll find more on the ostomy board or at this site:

http://j-pouch.com/

I can't help with the DVT and coumadin issue, as I've never had to deal with that, but I have been on Remicade for over two years. First, you're receiving infusions twice as often as most people, and even more often than the shortest time interval recommended by the manufacturer, which is six weeks. If after this amount of time you're still having intermittent flare symptoms, I suspect it's safe to say the Remicade isn't going to help you much longer. So you probably will be considering surgery soon, unless there are clinical trials of some of the newer, not yet approved drugs in your area. If there are, you can always look into those.

Generally, I can tell you that the people I've encountered who have had the surgery have not regretted it. They live normal lives and aren't sick all the time. But only you can decide what's best for you and your family.

I'm going to take the liberty of changing the title of your post, in hope it will get you more responses. Good luck.


Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/12/2008 7:32 PM (GMT -7)   

It sounds as if you have had a tough time over the years with managing the disease.  I had jpouch surgery 7 years ago due to refractive disease; I have never regretted my choice.  Surgery is difficult but I have had enjoyed more of life the last 7 years with excellent health tand not having UC rule my life.  My story was in the NY Times last week, you can read it on the attached link.  Also be sure to visit the jpouch board.  The correct address is www.j-pouch.org

http://health.nytimes.com/ref/health/healthguide/esn-ulcerativecolitis-ess.html?ref=health

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/12/2008 7:57 PM (GMT -7)   
i didnt have the j-pouch but i do have a perm ileo, and life that way is sooo much better than UC. i know that the fear of clots is scary, and that you are scared of your kids losing you. But the chnaces of that are low. And think of it this way, once you have the surgery you won't have to worry about missing out on t-ball games, or dance recitals, or field trips because you are sick. You will be able to do all those things!
I would say that the remicade is failing also, i think that them giving it to you every four weeks is risky anyway, that's way too often, at least in my opinion.
I wish you luck in whatever you decide!
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