How did you decide it was time to move forward with surgery?

It seems like a lot of you where forced into surgery because you where so ill, so I'm curious if there is anyone out there that had the surgery because of choice, either yours or the docs.

For me, I'm not being told I have to have surgery but it's being suggested because I've tried multiple medications such as prednisone, rowasa, 6mp, asacol and a few other I cant think of at the moment but none of them are keeping me in remission. I'm currently on 60mg of prednisone and 50mg 6mp and I cant remember the dose of asacol but I take 12 a day. and have been for over a month and my symptoms are not improving. So my next step will be a second opinion.

For me it surgery is being considered because i have run out options with meds. I had very bad allergic reactions to asacol, rawasa, canasa and 6MP. Prednisone worked but the side effects were really nasty. Prednisone made me so hungry I could eat a horse AND I could have ripped his head off to do it... I was so agitated being the main side effect of prednisone. You also can't be on Prednisone forever as it cause a bunch of long term problems.
I have been on a double dose of Remicade for 2 years and the effects are not lasting long, now it is only working for a week or so. I use Methotextrate which helps some but I have had no remission since last Aug.
My Doc saw this coming a year ago and has been suggesting the surgery but it has only been a couple of months since I have decided to go ahead with it. I figured better now before it has to be done in an emergency situation.
I have pancolitis which makes my whole colon pretty useless and causes daily problems.
My surgery is set for July 5th.
Hope this helps.
David

As best I can tell, my situation was similar to yours before I decided on surgery.

I am allergic to sulfa and Imuran (6MP) and took every other drug available. Remicade was useless, so I was left taking 30mg of prednisone and Colazal. I was in a constant mild flare and still suffering from the side effects of prednisone and on the path to some of the nasty long-term effects.

My GI suggested the surgery and I began to research it.

I made the decision to have the surgery because a future with a pouch (or even an ileosotomy) looked better than a lifetime suffering from UC and prednisone. I had exhausted all my other options. (I also tried diets and herbal remedies, they failed miserably).

I'm only 8 weeks out from Step 2, but I'm already very glad I went through with it.

I am sure that you know that use of prednisone long term for control of UC is not appropriate and is only appropriate for short term use to induce remission or to relieve symptoms enough until other drugs can induce a remission. If you have been on high dose prednisone for 3-6 months without remission, you either try all possible medications, or opt for surgery.

I think you probably answered your own question. Doctors will not insist on you having surgery unless it is life or death (such as toxic megacolon or severe hemorrhage).

For me, it took about six months to really come to the conclusion that remission was not going to happen. Surgery was offered as an option within a month of my final flare, but since I had been able to get into remission every time before, I held out, and eventually asked for the surgery. I was on 80mg of prednisone at the time of surgery, using both Rowasa and hydrocortisone enemas, and on an elemental diet. In the long run, the prednisone probably contributed to the several serious complications I had.

Jan

I can relate to the above. I wasn't forced into surgery by cancer, toxic megacolon or anything like that, but my colon was knackered and so was I. I never seemed to get into remission. I'm allergic to Imuran and sulfa, too. Or rather, Imuran was ok on my gut but made me highly photosensitive, so I had to stop. Pred...UGH!!! Dumping my colon was a very hard road to tread, but the best thing I could have done. My pouch is GREAT

I am glad to see that other people tried all kinds of diets and herbs etc. and came up empty.
That is the one area I "think" I have not exhausted all options to getting my UC into remission. I wonder if my drinking diet coke all these years gave me my UC...nobody knows for sure where we get UC or Chrohns from.

I think you are hearing a lot of the same stories here. My case is very similar. I had UC for 14 years with every med imaginable. Sometimes it worked, but not enough to stay in remission. I was used to the fact that I just didn't eat unless I was home and close to the bathroom. I missed so much with my family...going on vacation and while they ate dinner, I just browsed in shops or walked around waiting for them. I knew if I ate, it meant running straight for a bathroom, and then home and ruining everyone's fun. So you get to a point in your life when you ask...is this how I want to live the rest of my life? Even then, I fought it when the dr.s told me I had no other choice, if I wanted to get well. I have had step 1 of a 3 step, and I feel wonderful. I know it will not be easy in the months ahead with the next steps, but neither has 14 years with UC. If you can live with THAT...you can make it thru the surgery!

nys

Hello,

I had UC for 19 months. I tried the usual course of drugs and nothing worked. I then asked about surgery. My doc had said the only reason he hadn't mentioned it (other than in passing) was that people usually try all they can to save their colon. 19 months isn't that long to suffer with UC. However, once it became clear that no meds I had tried worked my doc gave me the option of surgery or Remicade. I opted for surgery (Remicade = ). There was no pressing issue with me having surgery. I chose it because I didn't want to suffer from UC anymore and there was no reasonable indication that it was going to lessen in severity (although I didn't suffer that badly from it - average of 7-10 bms a day, hemoglobin at 11, night sweats, mild cramping, etc. -- only it was persistent).

Hope this helps.

Oh yeah, I guess it's good you live in Norway Soph. The best place to be when you are photosensitive.

Z

My GI had brought the subject of surgery up a few times during my last flare. I always told him that I did not consider that an option although I was starting to get concerned with the long term side effects of prednisone. It wasn't until a 9 day hospital stay for bed rest and IV prednisone that I made a decision. It so happened that one of my nurse's had a j-pouch. She broached the surgery subject with me and we talked at length. She calmed my fears and shared with me what life was like with a pouch. I was impressed, she ran marathons, she'd had a baby, and she worked 10+ hours per day. I decided then and there that a very good life was possible post surgery. After talking with her I told my GI if the hospital stay didn't turn things around I was ready for surgery. Thirty days later I asked for a consultation when my health started deteriorating again. Meeting the surgeon sealed the deal and since then I have never looked back, never questioned whether or not I made the right decision and moved on with my life. I couldn't be happier with the results. For the first time in a very long time I know what it feels like to feel normal.

Sue

I had UC for about 18 years before I had to do anything drastic. The last 3 years before surgery seemed to be one flare after another. My GI had mentioned surgery a couple of years before I actually did it. There comes a point when you just can't get control of your life - and you just know it is time. I was so freaked out by surgery and did everything to avoid it - from meds to holistic. But in the end when I had my first consult with a surgeon he said it wasn't if it was when and it would be better to do it before things got worse and there might not be a choice. This surgery is very difficult and life changing, but it was the best thing I could have done. - Lora

After trying every medical intervention to keep my uc at bay and highly resisting even listening to the mention of surgery, I had a consultation with a highly respected specialist who, after hearing my story and examining me, said, "You have forgotten what it is like to feel well." That did it! It has been five years since my surgery and I know I shouldn't have waited as long as I did. I love my J-pouch!

My GI wanted me to continue taking drugs until it was a life or death situation. I opted for surgery anyway because I was not responsive (or was allergic) to drugs (Asocol, Pentasa, etc.) except prednisone. But Prednisone is so horrible to live with that it made the decision for me easy to choose surgery. I was also very leary about immune suppressing drugs. If Prednisone is bad - immune suppressors have got to be worse for your body.

This is my opinion (you must come to your own conclusion after amply research) but overall I think most people with UC (that don't go into remission) are surgery bound. So get the surgery done at an earlier age rather than wait until the drugs harm your body more and your body is older and doesn't recover as well. I had mine at 34. That's young but I know if I had it earlier, my recouperation would have been easier - and if I waited, it would have been harder.

The biggest advice I can give you is to get a good surgeon - no a great surgeon. And do lots of research. And make sure they rule out Crohns.

I love living a UC-free life. Surgery is definately worth it. Do make sure your loved ones are well informed too - they help a bunch during the recovery process. It's not that easy - but still worth it.

For me, like many others not "forced" into surgery I had lost all quality of life. The last time I was on prednisone it was accompanied by Imuran and 9 months of continual medication had done nothing to calm down my flare. I was 24 years old, trying to teach and have a social life and failing miserably at all of the above. Each time I went back on the prednisone the side effects of the meds were getting worse-almost as unbearable as the Colitis itself- I gained 20-25 pounds, I couldn't sleep and I was in chronic pain-not to mention all the trips to the washroom. And then I got a kidney stone- likely from all the meds and my poor diet....I already had my consultation with my surgeon scheduled at that point and the stone sort of confirmed for me that surgery was my best option.

I had a very rocky recovery and it took me almost 5 months to start feeling good again because of complications and it was 10 months before I had my jpouch created. Even so, I don't regret it and I feel better than I have in years and years! I have my life back.

Oh ya, I got diagnosed at 16 so it was still a good 8 years before surgery became an option for me. It was a last resort and my GI finally conceded that it was my only option for getting healthy again.

quote:

I opted for surgery anyways because I was not responsive (or was allergic) to drugs (Asocol, Pentasa, etc.) except prednisone. But Prednisone is so horrible to live with that it made the decision for me easy to choose surgery.

That is the same reason for me. I have been on Remicade for 2 years and it doesn't work anymore, so Surgery is next(and best)option.

My story is so similiar to the ones above. For 6 (25-31 yrs old) years my life became controlled by my UC; going to the store was stressful, social life was strained, work was hurting, and so on. It was difficult to realize but all my decisions were being made based on 'living with UC'. I have tried everything and then some. As for medicine - all have failed, the final straw in the medicine trials was a double dose of remicade every 4 weeks that didn't help, I also tried Humira and that didn't help. I've lived on/off Pred. for too long and it helps mildy compared to side-effects. It was mentioned to me 3 years ago to consider surgery and I was horrified and I fought it and fought it. After I heard surgery was my next option, I tried all sorts of natural healing from SCDiet to liquid diet, aloe, fish oil, etc...I even tried changing my entire lifestyle to remove stress, I took months off of work to try to give my body time to heal, and that didn't help. Then last year about this time, I began to seriously consider surgery, next I needed to find the right doctors for me which I didn't find in Oregon but in California. For me finding the right doctors was really difficult, I'm sure some of this was me and thinking that I just needed another opinion there has to be something else, but as I became more comfortable with the idea of surgery, I conveniently found doctors that fit. To be honest, I was having a really difficult time accepting surgery b/c I had become so use to living with UC, and that is why it took me 3 years to make this decision. Now, I'm a few weeks out from surgery and I haven't done it yet, but maybe now that I have made the decision, I can't believe it took me this long when they all told me the same thing year after year (4 different doctors).

You know, surgery didn't feel right before, I did what I needed to make sure I had exhausted my options; and now, it feels right. I understand that UC has controlled my life for too long and I'd like to seek a better quality of life and even though surgery won't be without issues living with persitent UC is no longer an option for me.