Hello to all, I am new to this forum.

I'm 35 yrs old and I've had UC for about 12 yrs, with the last two being the most difficult. My biggest question is, When is it time to have the surgery? I know it is getting close. Like many of you, I've been on all of the meds. I've been on Humira since May of 2007 and I'm taking prednisome off and on. I'm doing pretty good now, but tomorrow is always different. Maybe emergency surgery would be better. It's so hard to make that decision. I actually scheduled the surgery, and cancelled it a day later. I have a bad week and want the surgery, then a few goods days changes everything. Am I fooling myself? I am not scared of the surgery, I'm scared of the life after. Thanks for all of the great advice.

rj1

If you have exhausted all medical treatments but continue to stay on prednisone, it's time to have surgery. It's also far better to have surgery when you are relatively healthy. Don't wait for it to become an emergency. My situation mimicked yours as for the duration of disease and the longevity of the last flare. I was glad that I chose to have surgery when I did. Recovery is long but because you are healthy it's easier than battling the cycles of illness.

I think you are fooling yourself!

Sue

I was also pretty nervous about making that big decision to have surgery. I always knew that would be the endgame for me, but was always in somewhat of a state of denial about it. The last two or three years with UC were really bad though, so bad in fact that there was little I could do socially because of it. The decision was made because I was SO dysplastic that cancer was right around the corner.

I was also tired of all the side effects and long term damage that years and years of steroids and other meds were doing to me. It was really a no-brainer at that point...I had to have it done.

The last six months with a pouch have been good all-in-all and I wish I had it done a LONG time ago. It's a big adjustment feeling "normal" again, and there are some hurdles you'll face in recovering from the surgery. But not having the pain, urgency, and all the other problems that UC brings to the table is worth it!

Good Luck,

Bill

Wow I am so glad I found this site. My 16 yr old son was diagnosed with UC in September (75% of his colon). He was in the hospital for 3 wks. He just required another short hospital visit for another blood transfusion. Currently doing Remicade, 6-MP, Asacol and Iron w/Vit C. He is wearing down from periodic flare ups and downing pills. He has recently come to me asking for info on this surgery. I also ask, when is it the right time? All these meds cannot be good for his liver not too mention the unpredicability as well as lowered immunity. What is the better trade off?

Hi
I have had UC for 20 years. I'm 33 and started a huge flare 5 months ago, 4 months after I had my baby. I was offered prednisone again, Remicade and all the wonderful enemas. I lost my job because of being sick. My quality of life stinks, so I refused the meds and saw the surgeon last week. My surgery is 2/19. I'm so looking forward to feeling healthy and being able to take care of my baby without feeling exhausted and in the bathroom all the time.

This forum is wonderful and the people are so helpful. I would have struggled longer with my decision if I wasn't on this forum. The thing is, for me, it's not going to get any easier as I get older, and each year increases my cancer risk. I want to be able to enjoy family events and vacations, without UC making it difficult, if not impossible.

Take Care and good luck with your decision!!

Beth

Here was a great thread running a while back, called "For those not forced into surgery" - the stories in this post should be helpful for you.

http://j-pouch.org/eve/forums/a/tpc/f/9151071921/m/1621...621027232#1621027232

I was one of those who had emergency surgery. You know - it's not the way to go. It also meant that I had to have a 3-step procedure instead of a 1-step or 2-step. It meant that it most likely took way longer to recover from the first surgery - I was in the hospital for 3 weeks. I was so weak that I couldn't even turn over in bed by myself - I'd have to ring for a nurse to turn me from my back to my side!

So to answer the question - "when is it time?" The time is when you're ready for it. But the time should also be before the decision is made FOR you rather than BY you. Many people have mentioned that they wish they hadn't waited so long. But it's completely understandable that one wouldn't want to go into surgery aka the unknown. At least you're familiar with the 'known' even if it is horrific.

You will gets lots and lots of great information from this site and the people here are outstanding. If you decide to go ahead with surgery, there are (is?) a boatload of people here to hold your hand all along the route.

Welcome to the site (but sorry you even have to visit here....)

kathy

My story is similar to yours. I had UC for about 15 years when my doc sent me to a surgeon to discuss the surgery (at age 34). The surgery sounded (in my mind - you hear what you want to hear) similar to what I was already doing output wise.

Last year, five years later, my doc found cancer. Then I had to have the surgery and always need to worry about if and when the cancer will return, popping up somewhere else.

If your doc recommends it, don't delay.

Hey,

You are in the right place with your concerns. I'll add my two cents and hope it helps.

I lived with UC for about 11 years before I had my first surgery. I wanted to try every medical option. Some worked but then would just stop working. I was a contradiction to my doctor because I showed mild uc on inspection but my syptoms were always severe. Still I felt that surgery was a final option and I did not want to be stuck with a bag.

Finally I was tired and when I felt ready had the surgery. Having the ostomy changed my life it gave me back so many things I had been missing. Don't get me wrong a bag comes with its ups and downs but it is light years from being sick all the time.

I was so comfortable with the bag esp. being employed as a plumber, I had reservations about having my td surgery but because of cost and the chance of bag failure I wanted to give my pouch a chance. It is comforting knowing that if this does not work for me the ileo is an option that I lived with for a year.

My advice is don't let your disease dictate to you. Don't let others dictate to you. Inform yourself and make sure you make the best choice for you. If you really beleive that your body can't take anymore do not wait to give out put yourself in the best position to do things right. I am glad I did. Ask the people on this sight all you need to. It is great knowing that you are with people who understand exactlywhat you're going through.

C

I fought doing the surgery for 2 years. I had a solid, everyday flare for 2 years straight. My Doctor finally convinced me to have the surgery by telling me that
"I had been sick for so long I don't know what felling well feels like anymore."she was so right.
I asked the same question as you when I first joined this site before my surgery. Some wise person on this sight told me that if I am asking the question most of the time you already know the answer.
I might add...don't be afraid of the stoma thing.Once you learn a few tips and tricks(and people here will help you learn them) the ileo is better than life with a useless colon. As least it was for me. For 2 years I did nothing with my family,just work,sleep and run to the nearest toilet before I made a mess that had to be cleaned up. Five weeks after the first surgery I went on a trip to a IRL race,concert and aquarium on the same weekend with no pain or accidents. I emailed my doc and told her "I know what it feels like to feel well again"
You do have to make this tough decision yourself. I am only telling you my story because people on this site told me their stories when I asked the same question back in May/2007.
hope this helps
David

I cant say what I would have chosen had I been given the choice.. it was made for me after 4 weeks in the hosp. I was diagnosed the 2nd day in the hosp. for 4 weeks I was told I wouldnt need surgery then one day I have another scope to see how much better I am cuz the docs wanted to send me home and I had surgery that day. I do know that only having had UC for a short time.. (symptoms started about 4-6 months earlier) that life after surgery is WONDERFUL compaired to befor. Since it was emergency surgery I am having the 3 steps instead of 2. The first surgery is done and Im not having too many issues with the ostomy.. next surgery isnt untill May, the surgen wanted at least 6 months between the first and second cuz of how sick I was.. so going in healthier might give you less time between surgeries.

I was diagnosed with colitus back in 2001 and had 1 flare up per year until May 2006 where I was first hospitalized with the colitus and a bacterial infection. I went on steroids for the 2nd time and tried remicade, 6MP, and cyclosporine and none of it worked. I was so worn out and weak that I had to have the surgery at that point. I just had the reversal of my illeostomy 4 weeks ago and although it is difficult now with the high amount of trips to the bathroom I know things will improve.
Please make sure you are not on steroids for a long period of time. I was on for 13 months and now have osteoperosis and became diabetic for a time.
What does your doctor recommend? YOu may also want to get a second opinion. Good luck!

Over the past two years, I've had two local GI doctors to recommend surgery. Now I'm seeing a GI and surgeon at Mayo. I'm on humira for about 9 months now and it is not working as good as it was in the beginning. My Mayo dr's have told me that this is my last option.

So yes, I do already know the answer to my question. I know it's time physically, but mentally, I'm still trying to convince myself. It's hard to give in to surgery when I feel fairly well; although, I realize that could change within hours.

The support here is amazing. This is what I need. Everyone here seems to care so much. I value your opinions. Thanks.

"Everything can always be worse"
rj

rj1,
Most people on the site seem to have scheduled their surgery either on an emergency basis or because they had exhausted all medical treatments. I'm one of the latter. I had UC for several years with only occasional flares.
But in 2003, I began a flare that never ended. A year later, I had exhausted all medical treatments readily available at that time. I was steroid dependent and my health was deteriorating. I agreed to the surgery with the knowledge that emergency surgery was in the near future for me at my rate of decline.

The surgeries were difficult, but that feeling of being "ill" left me the day after my first surgery. From then on, I was recovering. I don't think I really knew how bad I felt while I had UC until after my surgery. It's amazing how can become used to feeling so bad.

My health is excellent now - I'm so very blessed that this option was available for me. The only residual problem I deal with is osteoporosis - from the prednisone. But all in all, I'm extremely grateful for the quality of life I now enjoy.

Hey RJ,

Everyone has pretty much covered everything, so this post won't be anything new to you but I want to help any way I can, so here I go... Deciding on when to have surgery will be one of the hardest decisions you've ever had to make; that is if you are lucky enough to not have to have it because of an emergency. Waiting until it gets to the point of it being a life or death emergency probably isn't the way to go for obvious reasons: longer recovery time, possibly more surgeries (3 step instead of 2, or whatever else), it being an emergency... But I can understand why you said sometimes you'd rather wait, you want to get all of the "normal" life you can out of your "normal" colon. I remember saying to my doctors and parents that I would rather spend the rest of my life in and out of the hospital than have weird pooping habits! That is until I was in the hospitals for weeks at a time and gained 50 pounds from the steroids and still felt like I was digesting razor blades. I guess my situation was a good one considering- I had exhausted all available treatments and I was starting to get worse, it was clear that if I didn't have surgery that being in the hospital for the rest of my life would be my reality... I had come to my wits end and I knew it was time.... I think the question you have to really ask yourself is "is my quality of life good enough to postpone surgery?" How many good days are you getting out of a week? How do you feel in general? I think when it's time you'll know it, I'd just keep discussing it with your family and doctors until you know its time to take that step.

Good luck!