Starting to think about surger, does anyone regret having it done?

I've had UC for 20+ years, flaring is becoming more and more frequent.  Using prednisone now to get it under control but it's taking much longer to work.  Hate the prednisone and all it's horrible side-effects.  Doctor has mentioned Remicade which I have concerns about but since I've had UC so long, and there are going to be obvious cancer risks, I thought I'd start researching surgery.  Everyone seems to be happy with their decisions, I was wondering if there was anyone who wasn't and why.

Thank you all for your input and prespectives.

 

Hi,

  Just wanted to add my two cents here. I have had an ileostomy now for 26 years. I have NEVER regretted having  the surgery. After being as sick as I was and knowing where every bathroom was from here to timbucktoo, surgery was a BLESSING! I have never felt so freed, so happy to have the chance to get on with my life. I was also on that dreaded prednisome, nasty stuff. Also the side effects were so bad....I really had no choice but to have the surgery as my colon perforated on the operating table after an exploratory to see exactly what was happening in there. Doctors suspected UC but they needed to know just how bad it was so off I went. I ended up with a colostomy at first, spent about a month in hospital building my body back up, then had my permanent ileostomy performed. In total I was in for 3 months, but please don't think this will happen to you. I had many complications that led to my long stay. It takes awhile to get back on your feet again but always remember this...keep moving. As much as it will kill you to get out of that bed, get up and walk. I thought to myself when the surgeon came in the day after my 10 hr surgery and nearly pulled me out of bed...."MY GOD, what is this guy thinking" I can't move and sure enough I was up, albeit a bit bent over from the sutures. Everyday, I got out of that bed and walked a few steps. A few steps led to a few strides and got to the point where I was wearing the rug out in the hallway of the hospital! Moving is so essential to getting yourself better. You won't regret having surgery believe me, at first you probably will think, "oh why did I choose this" but in the end it is SO WORTH WHILE! It now takes me less than 10 minutes to change my appliance and that is usually only once a week. Don't get me wrong, I do have occasional accidents when I have to change more but basically that is all I do. I have been given a new life so to speak. My ostomy is now a part of me now and I thank God it is there and it saved my life.

  As far as the Remicade is concerned. My son also has UC. He has been the gambit of drugs and his last resort was Remicade. He had a very difficult time with it. He says it seemed to make it worse so he went off it. He is back on the only thing that does help and that is the dreaded Prednisome. He only takes it every other day and its a small dose. He finds that he doesn't get the side effects if he takes it every other day.

So with that, I hope I helped you some. If you would like to chat more, you can reach me at [email protected] and I would be more than happy to help you out.

Good luck,

Annmarie

I just had mine done five weeks ago, an ilesotomy, and I don't regret it. I tried remicade, it worked for about three months, then failed and I was worse off, I wish I had never tried it. I had been sick for 8 years. And for the first time in all that time, I ate a snack in the car, without worrying if I would have to use the bathroom, I took a car trip without worrying where the bathroom was, or without taking 5 immodium before hand. Like Sue bear said, no more drugs!
I won't lie to you though, like reresunshine said, when I first woke up, I thought why on earth did I do this? And while I was in the hosptial it was harder, I think because they make you wear a clear bag, and the stuff that comes out at first is super gross, lol. But now it's not bad at all, I can go five or six hours without emptying it, or without worrying where the bathroom is.
I am happier since I did it.

no more meds, no more pain, no more worrying about where the nearest toilet is....no regrets here.

--matt

I don'y regret having the ileostomy,although it was done as an emergency and i didn't have an option..the pain has now gone,and i don't need to stay at home as much because i was always having pains,although at that time i didn't realise what was happening to me..
But i am so pleased to be relatively pain free,just have a few hiccups now and again,but on the whole it was a live saving operation..and I survived...
Best wishes ..nursy2..

Hello Annemarie..
We have been married 17 years...
The thing is,it seems that he has been wanting to go for a long time,and i have found out just recently that he has been having a field day..and basically used my operation originally as the reason for him going..
But now it has come to light that he has a girl in every port..he is a pilot..
Well,i have been to hell and back again,and there is no way on this earth i will ever take him back..not that its got to that..
But i will soldier on,and hopefully i will realise that it is not my fault that he has left me,he was cruel to originally suggest that it was the ileostomy that had turned him off me..

Anyway i am glad i have been able to talk on here,a lovely lady on the internet recommended this forum to me,and i am so glad she did..
Hopefully i will learn a lot on here,and hopefully i will be able to help someone..
Take care..nursy2

Hi Terp,

  Well I have had an ileostomy for 28 yrs now with no problem. It was a blessing to have the surgery, believe me. I have had a couple of blockages thru the years, but they were my own fault(ate an apple WITH the peel) which caused a blockage. As far as the joint pain, well I have just recently been diagnosed with Osteoarthritis in my shoulder and arm. It hurts like heck most of the time but it all goes along with having the UC. Its autoimmune they tell me. I was on Celebrex for about a month and it didn't ease the pain. I am now on Ultram for the pain, and will have to see how it goes. I am a bit older than you though so I think having this diagnosis at my age of 53 is something I will just have to deal with. Its another hurtle to jump over, but I have come this far and have a good outlook on life now. Having the surgery like I said is so worth it. Not having to find every single bathroom from here to eternity is such a blessing. You feel so much better afterwards. Good luck.

Annmarie

Thank you everyone for your input.  It's always helpful.  I had my colonoscopy last week and the doctor didn't think things looked all that bad.  Last 20 cms were roughed up, but other than the scar-tissue everywhere else and the pseudo-polyps, he didn't seem alarmed.  Instructions: keep weaning off the prednisone, keep using the canasa and we'll see what the biopsy results are. He didn't expect anything out of the norm though.  I'm finally getting some relief so I guess we'll keep on the current treatment methods and hope I don't flare again soon.  If I do, then we'll begin having more talks about the options; medicines and surgery. 

Regarding the joint pains from prednisone, I get knee aching while on this medicine, and I can say, that after I get off it, the aching does go away.  I find that drinking lots of water, watching the salts and taking potassium/calcium helps for me.  I also get horrible cramping in my feet and legs, but I do take a leg cramping/quinine tablet and that does seem to help.  My eyes feel puffy all the time, but I think that's just part of the "mooning" thing, heart racing and emotions running wild, but I'm lucky, once off the prenisone, all these things go away! 

Thank you everyone, and good luck to all!

Deb McG