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Question - I have UC but have not had surgery

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Posted 4/22/2015 8:14 PM (GMT 0)
Can I ask you guys how is your everyday life after surgery? Do you feel like it worked for you? What about did any bad things happen from it? Thanks you guys. I know someday I'm gonna have to get surgery just want to know more from ppl who have done it
Posted 4/22/2015 8:27 PM (GMT 0)
I had j pouch surgery almost five years ago. Probably one of the toughest things I ever had to endure but I'm so happy I did it. My UC was refractory.....I didn't respond to any of the meds and I tried just about all of them. My colon was really shot.

The only "bad" thing that happened to me during the process was an infection I developed after my first surgery. I had a huge abcsess form in my pelvic area. So I had it drained (not a pleasant experience.....long story) and after about six weeks it cleared up. I didn't set me back too far and I was able to proceed with my takedown surgery

I use the bathroom an average of 4x a day. (sometimes less, sometimes more) I have no urgency and I eat whatever I like. I'm not on any drugs.

I do have iron deficiency anemia. I don't absorb iron well. I'm sure it's a direct result of the surgery. I go for periodic iron infusions and it's all good. In short this procedure has been a God send. I don't know where I'd be right now if I didn't do this. All the best to you.
Posted 4/22/2015 9:01 PM (GMT 0)
I had my surgery in October and my takedown 3 months ago tomorrow. I had UC for over 10 years (got it when I quit smoking). I no longer responded to any meds except prednisone and at increasingly higher doses. I chose to go ahead with the surgery because I knew it would eventually become necessary and figured better at 58 than 68. I had never been hospitalized for my UC until the surgery (although I came close a couple of times during the last year). I chose it for quality of life and am very happy I did.

The first 6 weeks after the first surgery were tough even without any complications...I had never had any surgery before and really didn't know what to expect. Took most of the 3 months between surgeries to get somewhat comfortable with the loop ileo. Recovery from the 2nd surgery was much easier although painful around the old stoma site for about 3 weeks. I never took pain meds outside the hospital after either surgery...don't like them at all.

Life with the J-Pouch so far has been good. Yes, I go to the bathroom more frequently than I did pre-UC days but even after day 1 of takedown it was far less than when I had UC. I have stopped counting because it varies from day to day but does not impact my life at all. I'd say I average 8-10 x per day but I empty whenever I pee (not sure if I will ever figure out how to pee and not empty the pouch :) )! I was back to all my activities without any problems less than 6 weeks after 2nd surgery (and that includes 18 holes of golf 3-4 times per week).

So yes, I feel the surgery worked for me! And I really can't think of any bad things day-to-day compared to life with UC.

Vicki
Posted 4/22/2015 9:25 PM (GMT 0)
I had an end ileostomy for just over three years, which functioned very well and improved my quality of life vastly. I'm now five months post takedown for my j-pouch and my quality of life has decreased dramatically. I'm trying to tough it out, but will be broaching the subject of a return to ostomy with my surgeon in three weeks time.
Posted 4/22/2015 9:56 PM (GMT 0)
Silent- oh no what happened?

Thank you for the responses guys I appreciate it!! How do you decide if you want to keep the bag or get j pouch? Just a personal choice basically ?
Posted 4/22/2015 10:13 PM (GMT 0)
Hey Chrissy! I remember you from the UC forum... I have a perm ileo, it's just over 1 year. I chose that over a j-pouch for a # of reasons- mainly, when I went over the pros & cons of both, I found that the problems ppl., experience with an ileo are mainly mechanical- wrong pouches, wrong wafers, etc. Things that are easily fixed on your own, & even more easily fixed with a decent WOCN to help. The problems people seem to experience with a j-pouch seem to be more physical- pouchitis, pouch failure, things that are only treated with more surgeries. I personally felt that 1 major surgery was enough for me, no need to add 2-3 more into the mix. My GI, along with 2 of the 3 colo-rectal surgeons I consulted with, all felt that an end ileo was truly a good option- easily done, easy to maintain, very few problems, etc. And also- I wasn't even a candidate for a pouch, after all that! I really, really, REALLY like the end ileo- I just scarfed down 3 pieces of pizza for dinner, with red wine. Which would leave me in tears for the next 2-3 days with UC. Not anymore. I've been able to do things I couldn't for years- go out at the drop of a dime, go hiking, boating, swimming, aimlessy poke around the mall or downtown, go out for a meal... not worrying about where the bathroom is! Doing activities that would strike fear into me with UC. My surgery was textbook- not 1 complication. In on a Monday morning, home that Friday. I took 11 weeks off work, & needed every last day. It does take a lot out of you.. but amazingly, when your body is not busy trying to fight inflammation, you actually heal pretty nicely. My UC was refractory to meds- had tried numerous biologics, as well as the usual suspects. Of course, I'd prefer not to have had to go thru any of it... but overall, I'm extremely happy with the way things worked out. The ileo is fine- it takes maybe 20 minutes per week of my time- I don't even empty all too often. Compared with the hours I spent DAILY in the bathroom.... I'm good! It's great to get others feedback- it's not as scary as you think.
Posted 4/22/2015 10:54 PM (GMT 0)

Chrissysoul said...
How do you decide if you want to keep the bag or get j pouch? Just a personal choice basically ?

yes basically personal preference. I had a tough time with my ileostomy....some of it mentally but mostly physically. I found the whole thing quite a hassle (supplies, time involved, ect.) I'm just giving you my personal feelings about it. You could feel totally different about it as many others have no problems with their ostomy what so ever. Both my sister and my uncle have J pouches and I've seen how well they have done over the years with theirs so for me it was a no-brainer to give it a go.
Posted 4/22/2015 11:21 PM (GMT 0)
I had to stick with the ileo, at least for a couple of years. I'm not eligible for a j-pouch, but am eligible for an ileorectal anastomasis, i.e. connection of the ileum to the rectum. Surgeon is willing to do it, so I'll give it a go. It's similar enough to a j-pouch that the two are probably comparable.

Frankly I had a much better digestive system with a healthy colon than I do now. I haven't flourished since surgery. In some ways it's been the exact opposite, and I'm more prone to depression and anxiety than ever before. It may be a coincidence, it may not. I'll never know, but I do wish this had never happened to me. Wouldn't wish it on anyone, but I'm particularly unable to cope.
Posted 4/22/2015 11:53 PM (GMT 0)
The biggest benefit to surgery I think is the consistency factor, you know you are not going to flare up next week, or the week after, you can plan things weeks ahead, be there for your kids when they need you and be ~mostly~ if not fully drug free, do you really wanna be a guinea pig and buy the new drug company CEO another Benz?!

I have a Jpouch, but even with the end Ileostomy life was good, sure it's no colon but it's next best thing and you adapt to your situation and make the best of it. If you ask the majority of long term ostomates Im sure they'd tell you they go day to day without even really thinking twice about emptying their bag or even changing it for that matter, it's amazing how the human being can adapt/evolve to their situation and when you've lived the life for a year or two it really becomes second nature.

The surgeries wern't easy, and the loop Ileo was a pain in the butt but no one said life was gonna be an easy joy ride, and whenever you face difficulties the journey it self makes you a better, stronger person in the end and I learned so much through the whole process and it gave me a new outlook on life.
Posted 4/22/2015 11:59 PM (GMT 0)
Chrissy, nothing happened as such, my pouch has been highly irritable since it woke up after surgery. I get severe sphincter cramps, usually 100+ times per day. These cramps also cause pain in my testicles, prostate and stomach. I also have bad bouts, for up to several hours, where I keep feeling the urge to defecate, no matter how many times I go to the loo. I think the cramping issue is fairly uncommon, and I've just been unlucky.
I agree with Eva, ostomy issues are easily dealt with at home by the patient. J-pouch issues are a matter for the surgeon, and much harder to resolve.
As for what to go for? Only you can make that decision. My best advice would be to go for a 3 step procedure, and see how you feel about life with an end ileostomy. The downside though, is if you decide on a pouch, it means an extra surgery. However, a 2 step procedure, gives no idea what life with a "good" ostomy is like, as it means dealing with a loop leo, which are much harder to manage.
Good luck on whatever you decide, I'm not trying to put you off a j-pouch, but this forum needs balance, and that means hearing from both sides, good and bad.
Posted 4/23/2015 12:46 AM (GMT 0)
Continuing with the theme of balance, to be fair I have an end ileo and I've had to have three additional surgeries since having it made -- one for a butt wound that was blocked from healing and two for obstructions (due to a difficult to diagnose parastomal hernia). However mostly these have been mechanical issues not things that made me sick for long periods of time.

Getting my ileo gave me my life back despite the complications. I didn't really consider a j pouch due to the likelihood that I have crohns. Also I only wanted one surgery .... Didn't work out that way. But I was so so sick before surgery and I had horrible extraintestinal complications like painful boils, a terrible eye problem, and a 104.6 fever while on immune suppressing drugs. So surgery was an easy decision when things got that bad, and I am still grateful for how it restored my health even with the complications.

I have had a few pouching problems but none lasted too long and with the help of my nurse and this board I figured them out.

It's a big decision and only you can make it. I was adamantly opposed to surgery for myself until I wasn't. And I haven't looked back. Good luck.
Posted 4/23/2015 4:32 AM (GMT 0)
Omg thank you all so much for answering me :) it made me feel less scared if I end up needing surgery to see everyone is still making it without a colon. I think it's such a hard disease but just gotta keep moving ahead. I loved reading all the responses. I'm definitely terrified of surgery, but I'm much more scared of getting so sick I need it. I was once sick going 40x a day and I wanted to die. I hope I don't have to go there before surgery in the future.
Posted 4/23/2015 3:27 PM (GMT 0)
Hi Chrissy! For me, surgery was a total lifesaver! I didn't have UC for long...but it hit me very fast and hard! My final flare was quite severe, not responsive to any of the meds I had time to try, and my health declined so quickly and seriously that it was quite frightening. I was relieved when my GI mentioned surgery, and pretty much knew right away I was just going to go for the end ileo and never really considered the Jpouch. All I wanted was to be well as quickly as possible, and didn't feel like 3 surgeries and the possible complications/issues of a Jpouch were something I wanted to deal with. Not that there aren't things that can go wrong with an end ileo, but for many reasons I felt it was the best choice for me.

My surgery (which was just over 2 years ago) went very well and I felt a million times better as soon as I woke up. The surgeon felt I was too sick to handle having my backside sewn up at the time of my surgery, so she left that part alone. Unfortunately, that small anal stump remained inflamed, and about 2 months ago I went back for surgery to have that removed and my backside sewn up. Healing from that was tougher in some ways than the original surgery, but I'm already pretty much back to where I was, so no big deal really.

I have NO regrets about choosing to have surgery and get the ileostomy! The only real difference between now and my Pre UC days is that I have to be careful about lifting heavy stuff due to the risk of a peristomal hernia. But, I keep myself in good shape, stay aware of my lifting/movements and it's not a problem. Of course there is the general ostomy maintenance and supplies to keep up with, but I got used to that pretty easily and don't think twice about any of it most of the time. Yes, I do have a leak once in a while...usually while sleeping, but I just deal with it. I am beyond thankful to be alive, healthy and doing any and everything I want now (including eating anything I want), so the minor inconveniences are a trade of I am more than willing to make!

Of course, surgery is not a cure for UC, and some of us (like me) still have extra intestinal manifestations, but I would have had those without surgery, and they would be worse if I still had my colon. And from what I can tell, most people don't have any issues at all. I hope all of our feed back makes your decision easier if it ever comes to that. Sorry for the novel!
Posted 4/23/2015 6:25 PM (GMT 0)
I am just after takedown. I have only had a loop ileostomy, but it was absolutely great! My quality of life was so so good. When the time for surgery came, no body talked with me about a permanent ostomy. The risks of the jpouch are downplayed and I think it offers less stability in your heatlh. My ostomy issues were mainly resolved by just switching/adding hardware. Jpouch issues require doctors visits etc.

I think that if you can handle having an ostomy for the rest of your life, it is a safer choice than a jpouch.

That said, I'm only 2 weeks out from takedown and am supposed to be seeing big improvements. Chances are, I should have a quality of life just as good, or even slightly better than my stoma. I know many people who have had NO ISSUES with their jpouch. The point is, it's just a greater risk and more surgery to get only a slight advantage. If I do not see the improvements to pouch function that I am looking for, I will regrettably have to go through one more surgery to get a permanent stoma.

All this said, colectomy is the best decision I ever made. I am so happy with that. I regret doing the jpouch so far, but life without a colon is so much better! If you are endlessly suffering with UC, consider both options without letting anybody bias you one way or the other.
Posted 4/23/2015 6:48 PM (GMT 0)
SS,

You really have to give it some time, 2 months may not even be enough time to evaluate it. You are still recovering from a surgery, your body needs to heal. I was actually in the hospital for 11 days for my take-down.

I really liked my end ileo but I like my j-pouch more.
Posted 4/23/2015 7:01 PM (GMT 0)
Hi Chrissy! I needed to have surgery because I became steroid dependent. Prednisone was the only thing that worked well enough for me. I had two step jpouch surgery. First step in December, takedown just this past February. I will tell you it is a very hard process that seems like forever and there were times I thought it would never get better. After my first one I ended up in the hospital again with low sodium and needed a central line overnight, not fun! However, I am a little over 2 months out from my takedown, going about 5-8 times a day, and on no medicine. I definitely think I made the right decision! I actually just went to an amusement park last weekend and was there all day. I rode all my favorite rollercoasters and rides with no problem and only went to the bathroom three times the whole day with no meds controlling it! It was amazing! its a tough road to recovery but I'm glad I did it in the end! I chose jpouch because my surgeon told me I was a good candidate for it and I wanted to at least try to feel as much like I did before all of this had started. Also my loop ileo that I had temporarily was a huge adjustment for me that was really hard for me to deal with. Good luck with everything!(:
Posted 4/23/2015 7:24 PM (GMT 0)

Chrissysoul said...
Can I ask you guys how is your everyday life after surgery? Do you feel like it worked for you? What about did any bad things happen from it? Thanks you guys. I know someday I'm gonna have to get surgery just want to know more from ppl who have done it

ChrissySoul,

The best way to describe it is that I feel human again. I was really sick for about a year before my surgery, I just couldn't take it any longer, I was begging for surgery. I couldn't function any longer in my pre-surgery condition. I only wish that I had surgery sooner.

The worst thing? Nothing really that bad, living with the Loop Ileo (was my 2nd step of 3) was more difficult than living with an End Ileo (1st step). I had a 3 step surgery because I was so sick.

I was able to work between surgeries; but I was tired and struggled some times, especially after step-2.

Overall I had minor complications after every surgery, you should expect minor complications and a learning curve for an ostomy. It is definitely manageable. Because of some of my complications the total time that i was in the hospital for all 3 surgeries was 50 days, it was all minor stuff, instead of recovering at home I spent extra time in the hospital.

Going into the surgeries I expected about 20 something days for all 3 surgeries. I wasn't pushing to get out of the hospital, I have a supplemental insurance policy that pays me $300 a day while I'm in the hospital. It costs me about $280 a year for the policy. If you are planning for surgery in the distant future then you might want to a policy out, they have a 12 month preexisting condition clause after that they cover you for UC.
Posted 4/24/2015 2:51 PM (GMT 0)
ChrissySoul nailed it.....it finally makes you feel human again. At age 54 I never expected to have my life so altered by having UC and all that goes with it. I suffered through all the drugs, drug reactions, restrictions, and misery for 6 long years before I finally called "UNCLE" and had an end ileostomy. At 60 years old, my surgeon advised me against a J-Pouch as the failure and complication rate is higher the older you get. So and end ileo was my choice. Now, 2 1/2 years later those 6 years are becoming a distant memory.

Many people on this board have given some great advise but I'd like to highlight a few things that, at least to me, are imperative to a good outcome:

Take the time to choose a surgeon you are comfortable with and has a good reputation.
Recovery is a long process. It takes a full year to feel like you are "out of the woods".
Recognize that your illness had a huge impact on your state of mind. It takes awhile to leave all those fears and anxieties behind.
Most surgeries have some complications afterward. Within 7 months of my Proctocolectomy I developed a parastomal hernia (required surgery) and 2 months later had a blockage due to scar tissue(also required surgery). Every surgery went well as did the post surgical recovery.

I am 100% happy with my decision to have surgery and rid my body of a colon that was robbing me of the life I wanted to live. NO REGRETS.
Posted 4/25/2015 9:05 PM (GMT 0)
Thank you so much for the responses I love reading the stories and seeing that there is something I can do besides struggling horribly with UC lol. But yes so far it is so hard sometimes and it's nice to know I'm not alone in this. And that you guys got through it I feel like I can too
Posted 4/26/2015 12:23 AM (GMT 0)
Hi Chrissy. I think I am the "old lady" in this bunch. I was diagnosed with UP (only in the rectum) when I was 52 yrs old, back in 1998. My flares started getting closer and closer together until, finally, in 2010, I decided enough already. By then, I had tried 6MP (seven years of that crap and it never helped me into a remission), Remicade (failed after my 3rd infusion) and Humira (no change after three months). I was prednisone dependent and it was killing me. I missed out on so much during those twelve years, family weddings, funerals, bridal showers and my grandson's First Holy Communion. I had port a pots in every room of the house and I live in a rancher. My GI doctor refused to send me to a surgeon. All he wanted to do was use me as a guinea pig and try more and more meds. I found my surgeon online, took the bull by the horns and scheduled my appointment. He took one look up my rear and said "OH MY". That did it. He made me wait until I was off the Humira for six weeks before operating. I also tried to wean off the prednisone as much as possible, but was unable to get below 20 mgm before flaring. I was too ill for j-pouch, but I didn't give a hoot. I just wanted my life back.

Here I am, 68 yrs old and going strong. The only med I take is one 25 mgm pill of Toprol xl a day for my very well controlled BP. Before my operation, I took 17-25 pills daily plus rectal meds...ugh. Sure it took me awhile to feel 100%, but wow, was it ever worth it! Only drawback now is that my surgeon (who retired in 2013), did not sew the anus closed. I was taking Ibuprofen for a bad back (thanks to the prednisone) and the UC appeared back in the anus. I go to a new colorectal surgeon who took biopsies back in November. He placed me on Cort suppositories. I see him every three months or so. I have no discomfort anymore, so, hopefully the suppositories did the trick. I see him on May 13th for a checkup.
Posted 4/26/2015 2:09 AM (GMT 0)
Thanks Christine - that's crazy you had to go through all that :(. That's what I don't wanna do! I didn't know you could look up surgeons online. How did you know which one to go to? The sewn up anus thing also freaks me up what that would be like!!
Posted 4/26/2015 2:15 PM (GMT 0)
Chrissy -

Pretty sure you know my story but I'll give a little overview of it again.

End of June 2013 started symptoms (after quitting smoking.)
July 12 2013 diagnoses UC.
November 2013 quit responding to Lialda or Prednisone (though I dont think the steroid ever helped.)
April/May/June 2014 multiple hospitalizations for 50lb weight loss, anemia, multiple vitamin and mineral deficiency and dehydration.
May had consult for surgery (basically have it now planned or emergency within 3 months.)
July 14, 2014 - colectomy with Ileostomy (step 1)
September 2014 UC symptoms returned in remaining colon/rectum.
November 5th, 2014 - rest of colon/rectum removed and Barbie Butt/Permanent Ileostomy.

I got my life back with my ileostomy. I was 28 at the time of my surgery and recovered well with no complications. Only 5 day stay in hospital.
When it started coming back I knew I didn't want a jpouch as I do not respond to steroids (even IV while in the hospital in April/May/June) and worried about pouchitis.

I have a video on my youtube about why I made the choice for no jpouch.

I know you have asked a few times over the last two years about surgery and I'll say what I say to you each time. QUALITY OF LIFE.

If you are not living your life because of our disease or your symptoms or medication side effects or whatever - - then Have Surgery! GET YOUR LIFE BACK!

But of course its not a walk in the park to have a major surgery and a major organ removed. ...to have your life changed forever... but UC has already changed your life forever, for the worse! So if it's time to change it for the better... do it! :)
Posted 4/30/2015 4:50 AM (GMT 0)
embers- thanks :)) yeah, I am definitely really scared of surgery, and I Am also really scared of flaring again. I don't want to crap 40x a day again. if I started going that route I would start hounding my dr to take the darn thing out. I feel like I also don't want to use prednisone either. I want my colon out if I have to use a steroid because I'm flaring so badly. I'm done!!! but for now, I am surviving ok. but I have made the decision I will get surgery and push for it if I do begin to get really sick again. I will not let it take me down!!!!
Posted 4/30/2015 10:20 AM (GMT 0)
Chrissy
Just some food for thought. Having surgery when your NOT really sick is always better. Going into it when you're very ill makes it tougher to recover and opens yourself up to the likelihood of complications. Especially if you're on prednisone.
Posted 4/30/2015 4:22 PM (GMT 0)
I agree! I was in remission when I had my surgeries. The first one I was on about 10-15 mg of prednisone when I had it and it slowed the incision healing. Caused it to open where I needed to pack it with gauze until it closed. Then my reversal I had tapered the pred that I was on and wasn't on any for that surgery. Still was rough but the healing went a lot faster. It was still hard even when I was feeling good beforehand so I can't imagine how it would be going into it and trying to recover while being sick beforehand! So I do agree that it is better to have it done when you are feeling alright. That made me start to question, because I was thinking "am I making the right decision?" Because I felt fine when I went into it which made me think maybe I don't need surgery. Then I realized it was just the prednisone tricking me into thinking I was okay. Now 2 and half months post reversal I can say I am glad I did it!
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