J Pouch Surgery?

I am 32 years old and have had Ulcerative Colitis for 8.5 years. I have moved to NC from NY and was having trouble getting health insurance due to a "pre-existing condition". I was on Humira, Asacol HD (800mg), Folic Acid (1mg) and Azathioprine (50mg) until all meds ran out and I found my self in a flare which knocked me out of a job (again). I was able to get health coverage and back on meds, but now the Humira doesn't seem to be helping at all like it did before. My GI doc is suggesting surgery and has mentioned that there are some of the best surgeons in the world near by that have perfected the J pouch procedure. I'm wondering if anyone has had this done and regretted it, not regretted it, had any issues/side effects/complications, expectations that weren't met, etc?
I'm trying to do my H.W. before meeting with the surgeon and any info would be a huge help. My GI has said every patient he has suggested surgery to and has gone through with it has been very happy with their decision. Right now my quality of life sucks. I'm watching family and friends live their lives and enjoy every moment while I'm locked in the bathroom. Please let me know what you think. Thanks.

MJP79,
I'll keep this short and sweet unless of course you would like me to elaborate. I had j pouch surgery 2 years ago this June 25th. I have absolutely no regrets and have had wonderful results. A top notch surgeon who has done many j pouch procedures is a must. I had zero quality of life and and all the meds failed for me so it was really my only choice. Wish I knew then (the years I spent suffering going from one drug to the next) what I know now and I would have done it much sooner. Please let me know if you have any specific questions. :)

Jpouch.org is also a wonderful resource. Actually may be better to ask there because only a few of us have had surgery so you won't get many people with real life experience about it here.

ByeBye UC,
Who was your surgeon? And where was he/she located?

I don't have a jpouch and wasnt listed in somedudes post, but I do have a permanent ileo, the bag! I just want to say don't let the thought of ending up with a bag scare you away from surgery! A bad day with a bag (which I've had maybe 2 of) is a thousand times better than a good day with UC.
Good luck!

JACW,

My surgeon is Dr. Scott Goldstein and he is affiliated with Jefferson University Hospital in Philadelphia. Excellent surgeon and I was very impressed with the hospital.

summerstorm said...
I don't have a jpouch and wasnt listed in somedudes post, but I do have a permanent ileo, the bag! I just want to say don't let the thought of ending up with a bag scare you away from surgery! A bad day with a bag (which I've had maybe 2 of) is a thousand times better than a good day with UC.
Good luck!

 

Just curious, but would you mind giving an example of what a "bad day with a bag" may be? 

That was supposed to say "poo" not pop! Darn autocorrect!

Our story is almost exactly the same as ByeByeUC's original reply. Truly, our only regret is that Dillon did not have surgery sooner.

Hi there,

You will probably not like my response here but I need to be honest.

I had toxic megacolon in December 2009. I was sort of kept alive on machinery for 2 weeks after suffering multiple organ failure, final stges of dehydration and mulnutrition and went in to septic shock. I woke up with 2 bags after my large intestine finally ruptured. I suffered severe complications including massive heamoragge, pulmonary emboli, MRSA infection amongst others. 7 months later my J Pouch was built and one bag (my rectal mucosal fistula ) was removed and then 3 months later I had my reversal.

Sadly my J Pouch has failed. I still go to the toilet 20-40 times per day (including all through the night), suffer night time incontinence, really have to watch what I eat as I have had multiple total blockages and strictures that require dilation on a regular basis. I have chronic pouchitis and pain and the J Pouch surgery has blocked my fallopian tubes rendering me infertile (I have other issues so cannot take IVF). The medications that would usually work for pouchitis do not work for me. I was not told about the serious butt burn and itch that would occur after the surgery (which drives me mental on a regular basis).

What I will say is the following:

1) Having a planned surgery works out far better than an emergency type situation as I've described about myself above. I have met many people who went ahead with the J Pouch surgery and of those where it failed most of these people had ithe initial surgery done under an emergency type situation.

2) It also has alot to do with the Colorectal Surgeon you use. You need a master of their craft. I have known three people (inlcuding myself) who used my surgeon and we ALL failed. So I would definitely be using someone who others have heard of and recommended (and I'm talking about patients).

3) If you have pan colitis there is a good chance that you will need the surgery at some point - dont wait for toxic megacolon to set in and you no longer have a choice.

4) If you do go ahead you must ensure that the surgeon scrapes out the cuff to avoid Cuffitis which is essentially UC left behind. The cons of getting this done is that the muscles can be weakened causing incontinence however this is a far better scenario then having to remove the pouch because of Cuffitis (which I've heard of alot).

5) I know more people where it has worked than not so please dont freak out regarding my experience or others that I've mentioned.

As for me - I will probably be getting my J Pouch removed and going back to a permanent ostomy - however as others on here have said this really isn't too bad and anything is better that having severe UC.

Good luck with your decision and feel free to ask any other questions.

Tamara

I used to say I didn't regret the surgery, even though I had a completely horrible recovery and ended up having CD instead of UC, but now that I've been dealing with infertility for 1.5 years, I don't know. It's heartbreaking that I may never have a second child.
I did go off all meds about a month ago, though, and am not doing any worse, so that's good at least

I can totally appreciate the reservations one may have about having this surgery done. I procrastinated about it for two years while I got sicker and sicker. You know what? With some (actually many) people...like me...surgery is just unavoidable. I know there must be so many UC sufferers out there going to the bathroom 20+ times a day, bleeding, pooping their pants and taking dangerous drugs that don't work. Thats no way to live. Under the care of a highly skilled surgeon, this surgery is a life saver. Of course it's not perfect and there will be those who will have ongoing issues. It was most certainly a risk I was willing to take because I was litterally wasting away.

today is a bad day. i have already lost track of bathroom visits. i think i had at least 6 during the night with lots of blood. and the blood looked like clots or something. it's like chunks of red tissue(?) that just oozed red once they hit the water. and the odor is awful. i'm not sure what my next move is. i keep thinking about surgery, but i worry because i'm very good at building things up in my head and then i'm let down later when things don't go exactly as i imagined. i don't want that to happen if i go through with the surgery. and i DO NOT want a bag the rest of my life. depressed and very angry today.

Thank you so much ByeByeUC, I really appreciate your story and sharing your doctor's name. I had a major allergic reaction to Remicade again today - blue lips, oxygen, the whole nine yards so it is definitely off of the table. My doctor seemed surprised to find out that being off Remicade for awhile (while I was pregnant) could cause your body to build up antibodies to the drug. It would have been nice to know before I decided to get off of it and suffer colitis symptoms for nine months. This is the second GI doctor that has given me poor care. I'm starting to have serious issues trusting doctors. It's so hard to find information about good doctors.