Should I choose surgery for ulcerative colitis?

I would definitely recommend surgery. Just had my finaly surgery for the j-pouch about eight weeks ago and I'm doing well. You do have bms more often - normally about every time you pee - but that urgency is not there and it's fairly quick. Wish I had went ahead and had the surgery a long time ago rather than messing with Remicade, prednisone, enemas, Humira, Colazal, Asacol and 6mp. I would make an appointment with a surgeon who has done many of these surgeries to talk about the procedure and your fistula. You can always decide you don't want to have surgery.

Well I am a 10 year jpoucher and I take no pain meds, no antibiotics, and have never had cuffitis. I have had only one bout of pouchitis. I consider my surgery a success. It's true it doesn't work for some but they always have the option to revert back to an ostomy. Most do, some don't and they just accept their lower quality of life.

My quality of life is so much better. It's not like having a healthy colon, but it's better than living with UC flares.

Sue

I think experience of surgeon outweighs surgery type. I had the open surgery with a CR surgeon who had done 2,000 jpouches. His experience is probably one of the main reasons that I have done so well. I would encourage you to get a very experienced surgeon, for the best in your state visit www.j-pouch.org and ask the question on the discussion thread.

As for the ostomy, what really helped me was contacting the ET nurse prior to my surgery and having her show me the ostomy products. I didn't want to awaken from surgery with the appliance and not know what to expect. The other trick that really helped me cope with an ostomy was looking at it as if it were a science project. Once I better understood the function I was fine. And finally, the ostomy allowed me to regain my health VERY quickly. For that I felt appreciative of it.

Once you are released from the hospital the stoma nurse will visit you at home and help you with your ostomy. Piece of cake!

Sue

supernova - I haven't had surgery but I would like to wish you the best of luck in whatever decision you make. 14 years is a long time to put up with constant flares and I think if I were in your shoes, I would probably be considering surgery too. Actually, during my last flare up, I felt very lost and considered surgery myself. I was reading j-pouch.org and the ostomy board here, getting familiar with the different options. I think it is good to be informed and know your options. I ended up opting for 6mp which isn't a great medication to be on but it seems to have helped manage my condition (for now). I hope things stay stable for a long time but if they don't, I would definitely be looking into surgical options, it is really the only 100% longterm cure. I have all the same worries anyone would about surgery though, it seems like results are very individual, not everyone has good results. That's what really gets me and once you've done it, it's done. There is no going back. I didn't know that if you have a pouch and go back to an ileo that you have less small intestine and that it can cause issues. That is an interesting fact. I definitely wouldn't want to have a bag. I wouldn't want to buy supplies and have to wear aparatus or worry about wearing certain clothes/undergarments. The reality of the pouch/bag can be questoinable as gmark said, pouchitis, many trips to the bathroom, some have to wake up to empty in the night. It's a tough decision but most who opt for surgery are very thankful they did. That is always reassuring. You should check out the ostomy board.

I opted for a permanent ileostomy in November and had an open surgery with one of the best CR surgeons in my city. He said he preferred to do this type of surgery open. I think every surgeon has the preference and I didn't really care either way. I can't really comment on the time for healing between the two since I had some complications with my incision reopening a couple times. What was first thought to be an influence of Prednisone ended up being extremely rare reaction to PDS sutures (which are usually one of the least reactive types) used in my muscle layer. Now that those sutures were removed and/or replaced, I am healing very quickly.

Everything went great with the ostomy portion of my surgery. I never thought it was gross at all... in fact, I find it quite fascinating. And I have stuck with clear bags for now until I heal up completely. I haven't been able to experiment with supplies yet, as the one-piece type I left the hospital with worked fine, and I was too worried to try new things with an open incision. Once my incision heals up, I plan to try some two-piece pouches. With the clear bags, I have gotten very used to seeing poop and soon realized it is no big deal.

Now that I am 3 months out, I am able to eat most things again. I also have had only one leak in that time, and that was due to drainage from my incision getting under my wafer. I also haven't had any serious skin issues. One little spot under my stoma gets irritated once in a while, but it clears up with powder. One thing I found frustrating was that at first it was taking me 1.5 hours to change my appliance which frustrated me a lot. Now that my stoma size has stabilized and I don't have to make a pattern each time, it takes me 15 minutes.

I did go through some depression after surgery and went through some anxiety issues. When a few things went wrong, I started to get into the downward spiral of "what ifs". Seeing a therapist helped. I am also taking a "Mindfullness Based Stress Reduction" class which is basically meditation. This has helped me learn how to live in the moment instead of always worrying and being anxious about what will happen in the future.

I married my college sweetheart too. We have been married over 15 years, and he is so glad I had the surgery. He has helped me so much. When I got depressed after surgery he would remind me how sick I was with UC and how horrible I felt on Remicade.

Unfortunately, there is no way to predict exactly how your body will handle surgery. I just put a lot of trust in my surgeon and hoped for the best. That is why it is so important to choose a good surgeon.

Brought tears to my eyes, I am so happy for your son!

I am so sick of the pain and I am sooo hungry, tired of it all. And its only been 7 months. I am not getting on any of the meds, if it has to come out I think I will welcome it.

I can't imagine going thru this for yrs and yrs... this is my first post

I know surgery is the only real option.

 Thanks everyone, you are all a blessing and inspiration to me. :) I am going to see my GI doctor today and am letting him know that I am ready for surgery.
   Over the years meds did work for me for a little while. I was on asacol for a long time in the beginning with flares now and then that would subside with prednisone. Then tried enema drugs, immunosupressants, lialda, sulfasalazine, then remicade (all the while going on and off prednisone). With remicade I had three infusions, after the third one (that very night) I started experiencing lots of diarrhea. I was like, what the heck! Isn't this remicade supposed to stop that and it had caused it! I kept calling my doc. who would tell me it was "bad luck". So, I found a new GI who did a scope, saw how bad I was and admitted me to the hospital (this last Oct.). I of course was put on high doses of prednisone, which didn't help at all. And wouldn't ya know, my fourth stool sample showed C-Diff. For anyone who has experienced this infection, it is far worse than just UC symptoms! I couldn't even drink water without running to the bathroom. The doc later told me that the remicade lowered my immune system enough so the C-diff could attack. I was in the hospital for a week, overall I had symptoms of C-diff for three months (lost 25 lbs. in one week). I was the sickest I had ever been, so I was begging them to take my colon out at the hospital. After finding out that it was the C-diff causing all the trouble I changed my mind and opted out of surgery. I think I was in denial and used the infection as my safety net. A few months later the doc wanted to put me back on Remicade.. obviously afraid of the C-diff coming back I said no way. Well, this all mad me realize that the drugs I take for this disease is really hurting my body.. it's time to be healthy. Honestly I don't remember what life was like before UC, that is so sad to me (diagnosed at 16, now going on 30). I don't know how my doc is going to react to me telling him I want surgery, I guess I will find out today. I just hope this can all be done before my next flare (which I feel coming on). I would really like to go into surgery without prednisone, I am currently just on sulfasalazine. I want to say again, that it really does help to hear all of your experiences with surgery and that you can have a life after surgery. I hope that all of you keep telling your story and helping others, you have no idea how much it means to others.
Denell :)

Hey supernova, I am right there with you!  Actually, for a few years now I have been right on the cliff, just about to call and schedule surgery (I have already done a surgical consult) and every time I had a semi-remission save the day for me just long enough to get my hopes up that the next thing was worth trying (acupuncture, herbs, SCD, spinach and sunflower, hookworms, fecal infusions, whipworms, etc I have tried them all) ... but I seem all out of ammo now and even biologic drugs don't work so I think I will take the plunge soon.  I personally am not remotely considering anything but a jpouch.  If I am unlucky enough to have a failed jpouch then I will get one more surgery and a permanent ileo but I am bvery active outdoors and athletically, so I would really prefer the jpouch.  Good luck whatever you decide.  I am almost there.  Suebear is right- I think an experienced surgeon is the key.  That said, I am extremely scared.... but resigned and excited too.

Did you ever try this treatment ?

www.medscape.com/viewarticle/708871_2

The authors conclude, “We propose (this antibiotic regimen) to be considered alongside conventional therapy in patients with relapsing ulcerative colitis as an to alternative undertaking surgery.”

Hi everybody
I am very frightened by all I read here although moved and thankful to see how we can support each other, that's wonderful.
I am afraid because all these drugs are actually hurting as much as they (sometimes) help, and supernova I feel so sad about the damage to your tissues and bones and God knows what else. Frightened because surgery is a very violent solution on the body as well and sometimes simply doesn't work. I would have a long story to tell about some problem i had in my eyes and surgery only furhter simulated the tumor, as the head of Ophthalmology dept had to confess, suggesting a bigger operation to try to solve my eye.
I am always trying to look for alternative medicine nowadays. Because there must be another way.
Please consider that if a good surgeon is maybe the key is surgery, in natural medicines or holistic medicine, it's just the SAME.
So not getting result in these medicine is also a question of how good and experienced and qualified is the holistic physician.
In my case I have too many side effects with conventional drugs. Yet sometimes other medicine don't work so well and sometimes they do work wonder. I use herbal, ayurvedic, homeopathy and Tibetan medicine. But overall I know that I am myself not holistic and that is a hindrance to recovery through these medicines. Like, there are few things I resist, like having a regular style of life, regular sleep, regular eating patterns, and things like that, which may be the cause of some failure, especially the IBs or IBD I have now for 4 years> If I was in the US, I would try B. Brennan therapy, but these days I am in India I cannot contact any graduate from her school.
You can see on the web if you want to give it a try. What I know is that it is truly powerful yet gentle, but requires your cooperation in terms of willing to heal and not only get rid of a problem. Also, it is quite expensive. But Brennan has the excellent worldwide reputation to be the greatest healer in the Western world, and her approach to the body is really profound, as you can see in her books. I personally am fed up with conventional medicine, the symptomatic approach. I mean not only are we destroying are own organs, but the whole planet as well. I believe in a more holistic practice.
You can google her name and find more on her own site where you can just have a chat to express your concern and ask questions, or find a graduate from her schools. If you find a graduate near your place, you can have a frank discussion as well...
http://www.barbarabrennan.com/welcome/find_a_graduate.html
Good luck
I wish we can all go for effective holistic medicine and stop destroying our own bodies either because of auto immune disease, or violent drugs, or invasive surgery.

Post Edited (BetterThanHellThough) : 2/9/2011 12:14:05 AM (GMT-7)

Thank you for all the kind words and support. After having spoke to my GI doc, I am going to be seeing the surgeon next week. The only thing that the doc was concerned about was my rectovaginal fistula interferring with my possiblity of getting a j-pouch. Does anyone know or experienced this sort of issue? Thanks a Bunch!

Thanks for the infor. But my fistula was not the result of Crohn's disease. The very night that I gave birth to my son was when the fistula appeared. It was a rough delivery and they had to vaccum my son out. So, the docs aren't concerned that the fistula is from Crohn's. I had no previous problems with fistula until the birth of my son. I didn't even know what it was. They are pretty horrible though. I just didn't know if maybe when they removed my colon, if they could fix the fistula too at the same time. Then I would have the ostomy for a while, letting the fistula heal fully. Gosh, why does life have to be so rough! ugh!