I was diagnosed with UC in November of 2006 and within months was able to wean off of Prednisone and remain on Asacol as my maintenance drug. I was in complete remission for about 4-5 months before the symptoms started to return. I was put back on a Prednisone taper, which only helped the number of times I was running to the bathroom per day, not the extremely painful abdominal cramping. I could feel the symptoms return as I was weaning off and after having another colonoscopy revealing that the inflammation spread, it was now considered pancolitis. Then, I switched from Asacol to Colozal, began taking probiotics, concentrated on diet more, and started Remicade treatments. I felt relief once I began Remicade for about 2 weeks but then as soon as I started to wean off the prednisone again, I got very nauseous and was throwing up every day. My doctor is recommending the J-pouch surgery at this point because of my dependency on steroids and failure to respond to other medical treatments. All in all, I have been sick for 6 months straight. I can work and that’s about it. I have no energy by the time I get home every evening…misery and pain consumes my life. Going to the bathroom 6-8 times a day for the rest of my life if I decided to have this sounds fabulous compared to the 10-15 + times right now, especially if they were pain and blood free. But I am concerned I may be throwing in the towel too soon. Sometimes I feel as though I may not be a candidate because everyone I have heard and read about seems to have had the disease for many years, have had more hospitalizations, and overall seem worse off than I am now. Although at this point I cannot imagine things being worse and I am running out of patience! Does anyone have any advice for me?? Has anyone tried seeing a homeopathic doctor at all? I am not sure if I believe in them. I am doing as much possible research as I can on this surgery…weighing the pros and cons…and I still cannot decide if it is the way to go or not. Any help would be appreciated! Thanks!

I had UC six months before I got my j-pouch. Whenever you feel ready to go ahead is the right time for you...don't worry about "is it too early" - go with your instincts on what will bring you the best health.

A few thoughts.

Life with a healthy, properly functioning J-Pouch is soooo much better than UC, it doesn't even compare. Outcome of the surgery seems to be favorable, however some can experience various ongoing, sometimes chronic, issues.

Should you opt for the J-Pouch surgery, I'd think it best to do it while your were in a mild or moderate UC flare (if there is such a thing) as opposed to a situation where you are forced into surgery.

Should drug treatment or an alternative make you better now, there is a real possibility of having more flares in the future. I had one bout with UC in 10th grade (16 years old) that responded to medication. I didn't have another bout until five years later. That one happened to be the one that KO'd my colon. I didn't respond to orally administered drugs, was hospitalized for nearly 1.5 weeks on IV drugs not responding to those and finally moved forward with the surgery while it was still "semi-elective" (before my colon perforated).

There is nothing wrong with seeking out homeopathic or naturopathic alternatives. You may be successful, you may not. While many demonize it, it is largely no different to me than drug treatment. It may be successful, it may not help at all. In hindsight, I wish I had considered (back then I thought the only option was medical doctors and drug treatment) attempting to manage my UC via methods other than drugs. While it was probably (also in hindsight) highly unlikely that alternatives would have got me out of that colon "fatal" flare as I was possibly too far gone, it may have made a difference in the five years between bouts of UC.

Finally, I can't cite any scientific articles or former posts at the moment, I do believe that as you age with UC, there is a greater chance of colo-rectal cancer. It is my understanding from my doctors that the surgery mitigates this issue. No colon, no colon cancer.

Whatever you decide, you have found a great site and many wonderful individuals with much experience and knowledge. Best to you.

I had UC for about 10 years before the final flare up that I just couldn't recover from. I had never been hospitalzed. The cells in my colon became dispasic. It was going to become cancerous. The UC had also spread to Pan Colitis. If it sprread any further, it would be in the small intestine as well. When that happen, it becomes crohn's. After exhausting all the medications that I could try with no better results than I had with the Asacol, I went for the J-Pouch. This coming June will be two years since my step 1 of 2. I'm a city police officer and work out on the street. With UC I was constantly running to a bathroom. I didn't ever know if I would be tied up on a call for hours at a time and not able to get to a washroom. The J-Pouch is great. I use the washroom about four times a day now. Usually right after I eat. Sometimes I get up in the night, but usually I don't. When I feel the urge coming on, I know I can hold it. I have, for an hour or two when I need to. I had two or three obstructions, but found out that if I chew food well, I don't get them. I eat foods again that I haven't eaten in years because they caused flare-ups with the UC. I have no regrets. I am truly sorry for those that have problems, but am greatful that I don't. Good luck with whatever you decide to do.

Terry

As you may have read if you've spent any time on this site, having the surgery is not a panacea and could lead to other problems. I, personally, would not have the surgery until I exhausted all possible other remedies. If all that you've tried is Remicade, you have several other options still open to you, including cyclosporine, 6-MP, imuran, methotrexate, and a combination of any of the above. NIH also is studying the use of interferon beta which worked wonders for me for awhile when everything else had failed.

Keep in mind though that all of the aforementioned medications have side effects and you may decide that you'd rather have the surgery than to continue to experiment with your body. And as Jill noted, there is nothing inherently wrong with deciding after 6 months that you have had enough and just want to be done with it.

The purpose of my post is just to ensure that you are aware that there are other medical options still available to you and not to think that you must have the surgery just because your doc recommended it.

My GI first recommended surgery to me in 1995 after having been first Dx'ed in 1993. I went another 11 years without having the surgery - and then it was done because of other issues. (DVTs & PEs which necessitated being on blood thinners which of course exasperated the UC cuasing incessant and uncontrollable rectal bleeding.)

I offer my best wishes with whatever decision you ultimately make.

Scott

Have you ever been tested for c. diff/pseudomembraneous colitis? It's definitely worth it! Just make sure you submit 3 samples and they test for both toxins.

There is no magical number. Some members are diagnosed in the hospital and are having surgery arranged all in the same stay. It is worth a visit to a C/R surgeon for an opinion, although they generally recommend surgery of course. I believe I first met with mine less than a year after I was diagnosed.
In my opinion, I put off surgery too long, as others would probably say as well, but only you can decide when you're ready.

Here is a post running that discusses when is it time for surgery, etc...You may find it helpful.

http://j-pouch.org/eve/forums/a/tpc/f/9151071921/m/8711057462/p/1

Thank you all for your insights, they are much appreciated.

I did visit a colo-rectal surgeon this week and he was very conservative, which I was happy about. Ultimately it is up to me and I know the results of this are different for each and every person, but it definitely helps talking.

I was tested for C-diff, which I did not have so thankfully I could get off of Flagyl. The side effects of that antibiotic were awful and I realize that is what can be used to treat pouchitis.

Has anyone had any bladder issues after getting the pouch? I have always had a very small bladder as it is, but I guess as long as no nerve damage is done, those parts should remain fine.

My niece had UC and is having her take-down on Thursday. She suffered for a few years and never had any remissions.

I get the impression that people are told UC can be controlled in most cases so that, after a time of trying to cope with it, the inevitable ileostomy is welcomed, rather than dreaded.

Jules,

I am from the Charlotte area and would certainly recommend some SUPER Doctors and a Surgical group to you. Though I don't and didn't have UC, these folks were SUPER!!

My GI Doc is Dr. Robert Schmitz at Charlotte GastroEnterology and Hepatology (if you can't find his number, let me know...). His office is in Ballantyne.

My Surgeon is Dr. Douglas Rosen @ Charlotte Colon and Rectal Surgeons over on Randolph Road. The whole group is super, but, he is THE MAN!

I don't know who your seeing, but, they are all worthy candidates for seeing for 2nd Opinions. I trust them implicitly with my health.

If you have ANY questions or need further information, please PM me.

Charlie

PS They BOTH know me and know me very well.

Jules
Your decision to return home for the surgery is a very good choice as having your parents help and support is priceless.
Keep us posted.
Holly

The first time I met with a surgeon they told me I wasn't ready for the surgery, not because I wasn't a candidate but because they could tell I wasn't psychologically ready to go through with the surgery. The surgeon ended up being right; I wasn't ready then. I ended up suffering through it for another eight months or so before I decided to schedule the surgery. I'm not telling you to do the same, but don't have the surgery until you are 100% ready. I knew I should have it when I started looking forward to actually having the surgery rather than being scared of it.

Your story is similar to mine, except I had UC for just under 2 years before I decided on surgery. Pancolitis, resistant to prednisone/remicade, never hospitalized but couldn't do much more than work.

I agree with Philouza, it is important to be mentally prepared for the surgery. You don't want to be second guessing your choice when you hit bumps in the road on the recovery path. Diets, nicotine patch, herbs, acupuncture...try whatever is out there until you are pretty certain that the rewards outweigh the risks.

"Just put on my fourth ostomy bag of the day and it started leaking 30 minutes afterwards while out-of-town friends were visiting...I wished I had tried that diet"

"Man, my my butt is on fire...maybe I should have tried some Chinese herbs"

Those kind of things...

Is there any reason you haven't tried Imuran/6MP? (or perhaps you just didn't mention it) It is normally par for the course in the treatment of resilient UC. About two weeks I started Imuran I had an allergic reaction to it so that option was tossed out of the window.

Jules,

LuckyOne pretty much summed things up, in my opinion. Good post.

The potential for bladder problems is there, though it's quite a small potential. I'm not sure the stats on that one. For some of us, we had problems initially after j-pouch creation surgery but the problems went away over time. They are working very close to the bladder and kind of bang around on it while in there - that's the explanation given to me.

As for when to have surgery, the only things I would say (and they have already been said):

1. Don't wait until you are in an emergency situation. It's much better to do when you're healthy (which seems counter-intuitive at the time)
2. Find an EXCELLENT surgeon to do the surgery. Trusting your surgeon will go a long way to feeling ready for the event

I had my first and only flare that hospitalized me after 15 years of mild UC. I remember my gastroenterologist telling me that this was now going to keep happening and I sat there thinking, "No, it isn't." I took 6 semi miserable months to get work and life in order and had what ended up being 4 surgeries. I have never regretted that decision. I know I won't be sidelined by an unpredictable flare again, and that is enough.

That said, this is big, nasty surgery. I had a strong support system, excellent health care, 6 months of paid leave from work and enough money to hire help at home.

I think you need to consider all the above life issues when deciding. You will know when it is time. I had no doubt. I wanted that diseased thing out of me. Four years later, in spite of chronic pouchitis that is succesfully treated by Cipro., I know I would do it all again if I had to.