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OK, Here goes my boring story. I was dx with IBS in 1973, no Rx. Officially DX with Pan Colitis in the early 80s . Asacol 8-10 tabs as needed, Flares treated successfully with Prednisone 40-30 mg and occassionally Betnovate enemas, periods of remission up to 3 yrs. Biopsy of mild dysplasia 8 yrs ago, surgery discussed, I freaked out, couldnt get my head around it Dr. then said ok to do wait and see approach. Frequent scopes after showed no dysplasia. Last year 3 flares requiring pred. Scope may 22, this yr showed UC lower colon and rectum and diverticulitis. Dr. waiting to see biopsy results to see if bad cells and if UC still shows in entire colon as previous. She has suggested me taking 6-mp and treating flare with cortifoam as it could be enough for lower colon, meaning no more pred as she agrees my use is too long over the yrs. So taken the cortifoam with asacol and added a probiotic last 2 weeks 2x daily, poor bum, and realizing I am requiring prednisone again. Already. I am 52 yrs old my cancer risk is getting higher especially if UC is still in whole colon but even if its not. Heres the Question. Should I have j-pouch surgery now while Im healthy, try the 6-mp..... NOT TOO FOND OF SUUPRESSING MY BONE MARROW, LOOSING MY HAIR FEELING SICK ETC. I am totally FATIGUED now, I am taking 2 naps a day sometimes and early to bed. OR Do I continue doing the treating the flare of UC Pan or lower with Pred, if I opt for that how long do i continue until Im 80 and need a permanent ileo.or die of CRC?

Thanks for the place and time to blah,blah all that out.... Any and all responses will be great! As I am in between UC and possible pouch I have posted on UC sites but not alot of pouchers there, having said that the ones who are have been very possitive. Im just so undecided and probably should just wait patiently for Dr. appt on the 26 but I just am obsessed. THankyou Thankyou

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Hi ellie!

We exchanged posts on healingwell but I just wanted to say welcome to this forum. You will get a lot of support here. The folks on the UC forum there are a bit testy about the subject of surgery and understandably so but some of them get down right mean about it. Feel free to ask anything you can think of. Smiler
Thanks Marianne, I have read alot on here, u r deffinatly a success story and there are alot out there. Alot of problems too. Im just obsessed and cant wait for an answer. I dont know what will happen to help me be ok about whatever I will decide but i hope its soon! Thanks again for your support.
Hi ellie,

Your story sounds very similar to mine. I've been on 6MP now
for about a year and a half. In that time it really hasen't
bothered me all that much, better than prednisone!

I've still got my hair and outside of some fatigue while I
was starting it and slowly increasing the dosage it's been
fine. The fatigue has diminished with time. 6MP is something
you might want to try first just to see how you tolerate it
before going straight into surgery. If it were not for the Low
Grade Dysplasia that was found on my last colonoscopy I'd
happily stay on it to avoid surgery.

Good luck!

I had UC from 1972-1992. In those years my UC progressed to involve the entire colon and finally I ended up with LGD on my last scope in 1991. I failed biologics (Imuran made my liver chemstries go haywire) so I only lasted 20 years with UC. But, I am very happy I had the surgery even though I do treat chronic pouchitis, because it is far more manageable than UC was. Plus, I eliminated the possibility of colon cancer and prednisone use from my life. I have not taken prednisone since 1992.

I have a friend in a similar situation to you in which he has had UC for about 35 years, is taking 6 MP, feels fatigued a lot of the time but his scopes have been OK and no LGD. However he is now in his mid 50s and as he ages I worry about him having the surgery. It's not like they can't touch you once you hit 60, but I was told the general rule of thumb is try to have the surgery while you are younger and relative healthy because when you get older and sicker the chance for a good result from surgery decreases.

Good luck in your decision.
I understand the feeling of obsessing over this decision..I was really struggling over the idea of surgery. I was on Imuran, prednisone and failing remicade. I remember praying daily for the drugs to work to avoid surgery. Unfortunately they never worked I was considered refractory so I had no choice. The surgery is very tough and yes runs with a list of complications..So I know how scary it all seems. My hair is falling out daily right now so that may happen either way. I haven't had takedown yet so I can't tell you how wonderful life is. It seems so many do wonderful but it takes 6-12 months to get there. My opinion is to talk to a few highly reputable colorectal surgeons and hear their opinions. If surgery is in the cards for you then be prepared and educate yourself on what to expect..this site is here to help and support and offer all the info you will need..good luck on your decision..
I was told that the older you get, the option of having the j-pouch goes down (I believe due to continence issues?). I knew surgery was in the cards for me and I didn't want an ostomy. I tried 6-MP and Imuran and reacted poorly to both, I was also told that Remicade doesn't have that great of a success rate and usually only last a few years. So, instead of trying Remicade we decided that it was time to have surgery. I was 44 at the time of surgery. I am really happy I didn't wait. I have had great results and so happy I didn't have to have an ostomy long-term. I hated every minute of it. That being said, if j-pouch is not an option I have heard many people say they love their ostomy and don't regret it. I just wasn't one of those people.

I agree with Randi. Find a very good, experienced j-pouch surgeon and make an appointment. You are under no obligation, you will just get some of those questions answered and see if you are a candidate for the j-pouch. Good luck and good health!
Ellie --

My best advice is if you're considering surgery, do it while you're feeling relatively well (even if you're fatigued)and not wait until it's emergent. It will be a much easier recovery.

That said, I had UC for all of about 6 weeks before I was shipped off to surgery emergently. I was actually relieved to have that decision made for me, as I'm not sure I would have willingly done it, but I was so happy (immediately) not to have to face a long-term life of heavy medications, immune-suppressants, wondering when the next flareup would be, etc.

That was in January 2009. Now, 3.5 years later, I'm doing just great - healthy, happy... yes, the pouch isn't 100% like having a healthy colon, but it's a close second. The only problems I have are minor irritation if I eat too much sugar or drink too much coffee... things I should work on anyway.

Best of luck to you in making this decision. We all know it's not an easy one. But a year or so of going through surgeries and recovery is, in my opinion, so much better then spending the rest of your life in fear of your next flareup, feeling frustrated because of fatigue, and fearing possible CRC.

Hi Ellie. I agree with Becky, if you're seriously considering the surgery, it's best done when you're relatively healthy. No doubt about it, it's a tough procedure. With that said, though, the body has amazing abilities to adapt. Mine was done 23 years ago this summer and I am very pleased. Like others, I think it was easier for me as I had no decision; that colon was coming out! As others have said, life with a jpouch is not the same as life with a colon, but you adapt and adjust. Prayers & Best Wishes, Steve

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