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Ulcerative colitis surgery (permanent or temp ileostomy?)

Posted by Happy Cheeks, on Sun May 25, 2014 1:55 pm

Hiya everyone. I am soon to have surgery for ulcerative colitis. I'm just very confused which surgical option to choose. 

- I can either choose to have a total colectomy with removal of rectum and anus and have a permanent bag.

- I can have a j-pouch formed and have a temporary ileostomy while it heals and then have it reconnected later on. 

- or if undecided they said they can leave the rectal stump, remove the colon and then decide a year down the line whether I want to keep the ileostomy permanently or have it reversed.

I would really like to have more children one day and have heard the j-pouch can cause infertility, so I'm not sure about that option.?

I also worry about leaving the rectal stump in because I have active colitis there, would that cause any problem? 

Any advice would be great. Has anyone had a permanent ileostomy and managed to have children after? What's it like living with a bag day to day. Smile  lol sorry for the essay, hope someone can help. Thanks x

 

Reply by aHappyGirl, on Sun May 25, 2014 3:21 pm

 

For me - I would choose option "C."  I have not heard good stories about the J-Pouch.  If you'd like, I can get you my friend's number who got one.

I myself had a temp ostomy (left the rectal stump in place) and had it reversed.  I eventually had to have it put back permanently (and rectal stump removed) but I don't regret having left my options open in the beginning.

Who knows, maybe your rectal stump could heal.

Good luck whicheve you choose.

 

P

Reply by rolltide26, on Sun May 25, 2014 8:37 pm

I would choose option "B". I am a 27 year old female that just had my entire colon removed and a J pouch about 7 weeks ago. Mine is temporary. I am expected to only have it 3-4 months. I go back to my doctor in a couple weeks hoping for a good report and to schedule a reversal surgery date.

I had to have my colon removed because of Ulcerative Colitis for 13 years. I was diagnosed at 13 and battled the horrible disease from what I can remember now my whole life. Every medicine and every kind of flare-I have had. I don't honestly recall a period of more than 6 months that I was healthy consectutively. 

Anyways, I have "a bag" now. It is defintely a challenge every day. If you would have asked me a year ago, I would have thought death would have been a better option than having to go through this but it's not the end of the world. You can still have children with a J pouch too. If all possible, you don't want this permantely. I know that a lot of people have no option though and it is better than pain. On a positive note, I have had zero internal pain since I had my surgery. The only problems I am dealing with no are skin issues from my bag leaking. I have a very small stoma(inny) so it leaks a lot. But besides that every day is a count down and a blessing. Feel free to email me if you have any questions. I don't have the membership here to write back and forth.

Reply by Primeboy, on Mon May 26, 2014 1:08 am

Hi Happy Cheeks. Great name. Whatever you decide, keep in mind that the world of ostomy surgery and colitis treatments will probably make incredible advances in the next 5  or 10 years. You may not want to take any steps today that would exclude you from accessing these options tomorrow. Your surgeon seems to be encouraging this approach. Weigh your pros and cons, and be sure to get a second opinion from an expert, preferably a recognized teaching doctor at a research university. I know, it's easier said than done, sooooo. Good luck!

   PB



Last edited by Primeboy on Mon May 26, 2014 6:18 pm; edited 1 time in total
Reply by Happy Cheeks, on Mon May 26, 2014 1:53 am

Aww thank you so much for your replies. You've all been really helpful and its nice to have different opinions. 

It is a really tricky decision, but I think there are pros and cons for each surgery option. Just got to weigh them up. 

The things that worry me about a j-pouch, is that my surgeon said you'd have to still go too the toilet 6-8 times a day and twice in the night. Sounds silly but how I feel at the moment with colitis is that I never want to poo again. Lol sounds silly, but its taken over. Another thing he mentioned was this pouchitis. 

Please all keep in touch, I don't have the full membership so I can't start any private convos, but would be nice to know how you get on with the j-pouch rolltide26. 

You've all been brilliant and very helpful, I appreciate you spending your time writing back to me. Smile Smile 

Big love xx Smile 

Reply by Zywie, on Mon May 26, 2014 5:01 pm

I too love your name!  But can not advise you because I did not have an illeo or a decade or more of illness.  I just wanted to let you know I love your name and think you are cute as a button. Whatever you choose I pray your happy cheeks remain.  

Reply by Snookis Mum, on Tue May 27, 2014 7:36 pm

Hi Happy Cheeks

I had UC for 12 years, huge problems for the last 5 years - so much bleeding that I became anemic, explosive diarrhea in the middle of a store (that was the worst moment of my life - I just stood there and wept), pain, gas, going to the bathroom in my office was a noisy nightmare.I couldn't go to the theatre because I would not have time to get to the bathroom if I needed to. Which I always did.

Three years ago I had my colon and rectum removed. I was given the same choices as you, but the deciding factor was when the surgeon told me that if I had a J-pouch or a reversal, I would have diarrhea for the rest of my life.

My life with an ileostomy is almost normal. Yes, of course there were problems at the beginning - and even now I have the occasional blockage or leak, but I have learned to control them. I eat almost everything I want (just chew it to death!) I can go to the gym, ride my bike, swim, go to a movie, get on an airplane.

I wouldn't swap my ileo for anything.

Hope that helps, and good luck! laughing

Sandi

Reply by vikinga, on Tue May 27, 2014 9:34 pm

Hi HC,

I have an ileostomy because of emergency surgery in 2012. They think it was due to UC. I am not sure as that was the first time I had heard that.

I still have my rectal stump and prefer to keep it that way as long as I can. As Prime Boy mentioned medical advances in the near future could give us other better more viable choices. As long as it behaves itself I will keep my stump for now. I can always have it out later.

Good luck with your decisions and don't feel pressured more than necessary. Smile

Past Member
Reply by Past Member, on Tue May 27, 2014 9:49 pm

I was diagnosed with UC back in 1987. For 3 years I was in and out of the hospital. Flare up, admit to hospital, rest bowel, IV for 10 days to 2 weeks, sent home with high doseage of Prednisone.

Repeat this hell for 3 years, perhaps overall, 20 visits and prednisone over and over again caused my hip replacement. and my other hip to have troubles. A Vascular Necrosis, it is called, and arthritis throughout my body.

I had to have my large intestine, my Colon, removed to avoid any further damages caused by the prednisone, which, of course, is necessary to control and help in the recovery of Ulcerative Colitis, so it was an "elective surgery". But I really had no other option, I had my Colon removed, rectum reconstructed, and a temporary pouch for 3 months, while anal and rectal reconstructions healed.

By and large, I hate what I have had to live with since 1990. I was subsequently diagnosed with Crohns Disease in 2006. Thereby, removing any doubt that I was misdiagnosed in 1987 and the surgery I had in 1990 was NOT the answer.

My life has been a prison sentence for all these years.

The pain and suffering is unreal.

So, I have given you an account of what I have had to live with, before and subsequent.

Either way, I have given you information.

Good luck with which ever decision you make.

Stephen Crean



Last edited by Past Member on Wed May 28, 2014 9:05 am; edited 1 time in total
Past Member
Reply by Past Member, on Tue May 27, 2014 9:53 pm

Dear Snookis.

I always have a third eye on looking for rest rooms wherever I go.

It is clockwork for me.

I feel your pain regarding accidents in public places.

I haven't had one yet, thank God, but I have come close numerous times.

We all suffer invisible disabilities which are the worst kind, no one understands.

Our loved ones understand, our good friends understand, but the rest of the world doesn't understand the troubles and sufferings we endure on a daily basis.

Regards,

Stephen Crean

Reply by LilacFaerie, on Tue May 27, 2014 9:55 pm

Hi Happy Cheeks

Love the name.

I have a permanent colostomy and have had a total proctocolectomy (sp??). That's everything out and my butt stitched up. It was the best thing that ever happened to me.

I had longstanding toxic megacolon and could only actually poop once every 40 days or so. However, I had the urge to poop almost constantly. I spent hours in the toilet straining and only succeeded in pooping blood and shooting haemorroids out of my butt. And the pain was indescribable! I've been doing this for 30 yrs thinking this was normal. OUCH.

Eventually I spent more time in the bathroom than anywhere else, I had anaemia and was bleeding at least 2 cups of blood every time I strained to go to the toilet and was fainting and throwing up in the bathroom. I got totally phobic about pooping, bathrooms and anything to do with down there

I finally went to my doctor who sent me to a colorectal surgeon - the amazing Carina Chow. We have shrine to her at my place! She took one look and had me in for surgery 4 days later. I got a temporary colostomy - Tomi.

However, because everything was still left inside me, I still had the urge to poop, and that meant I still had the same problems. The bowel produces mucus and it needs to be pooped out. So more blood, more shooting out the haemorroids. Increased phobia about pooping only now it's mucus we're phobic about.

I went back to my surgeon and told her I still had the pain - felt like a metal pole stuck up my butt - and I still had the same problems as before. She told me with the amount of fissures and haemorroids inside me it's a miracle I can poop at all. Well now, that explains it! No, the pain isn't classic haemorroid pain so let's have a feel around. OMG that was so painful and embarrassing. Turned out my coccyx was badly dislocated and she could actually move it in a figure of eight pattern just with the tip of her finger through my bottom. OUCH.

She decided to remove the coccyx, and everything from half of my descending colon down, all of my rectum and anus and stitch me up giving me a permanent colostomy

From the moment I got Tomi permanently my life and quality of life have improved dramatically. I am in heaven. I am no longer terrified of the bathroom, I have total control. I feel cleaner than ever before and I don't worry about pooping anymore. The bag takes care of it all.

I can strongly recommend a stoma for solving the kinds of issues you mention. A temporary illeo will rest your bowel and perhaps help the UC.

For a first step I would opt for a temporary illeostomy. See how you go and then if the mucus issue is still causing problems maybe opt for a permanent after you've done a while with the temporary. Yes, it means 2 surgeries, and the associated risks, but if you aren't bother by the mucus poops then you probably could get away with retaining the rectal stump. If however you find you are still having the bathroom issues then have the second surgery to remove everything.

I've got nothing but good things to say about having a stoma. But my circumstances are exactly that - mine. You are living a different life with different issues. Opting for a temporary gives you the chance to try it out, see how it works for you and if everything gets better opt for a reversal in a year or so, or choose to keep your stoma for life. Opting for temporary is the best of all worlds as it gives you options down the track. My option within 6 weeks of getting Tomi was to keep him forever, your option may be different.

Living with the bag is just marvellous. Obviously there are major differences between the illeostomy and a colostomy - most importantly with a illeostomy the output is more fluid than with a colostomy and so you use drainable bags and drain it away, whereas I use closed bags and just chuck them out when full - or full enough to annoy me anyway. And there are diet implications for illeostomates that there aren't for colostomates. But a chat with a stoma nurse can help with those.

I wouldn't go back to my pre-colostomy days even if you paid me a small fortune. I love my stoma, he's my life partner and he's a wonderful addition to my life - gurgles, farts and noises at inopportune moments aside - Tomi is fantastic. I can highly recommend life with a stoma. You can do anything. In fact, I can do more with the stoma than I ever could without it. I'm not tied to a toilet and I can actually go out and enjoy myself. It's so much better than before.

Give one a go and see how it fits for you.

Good luck

 

Reply by Redondo, on Tue May 27, 2014 10:08 pm

Hi

I had Chrones. Initially, they left everything in tact and put on ilieostomy to just give my bowels a rest. It worked for a couple of years. Then I became very ill again and the disease was throughout my whole large colon and rectal track. So, I had everything removed and have had a permanent ilieostomy for the last 40 years. I was in ICU for several weeks because this was a very large surgery to say the least; however, I have lived a life that I wouldn't have lived without one. It has just become part of my life and my routine. Yes, sometimes there are some leakage issues but I would rather have this than the alternative.

These days, the medical advances at doing this type of surgery have greatly improved and from what I understand do not need to make such large incisions anymore because of the laser technology they can use.

When they initially removed my rectum and colon, I had issues with fistulas where the rectum was for approximately 5 years until everything healed.

I have been great ever since. Living with an ostomy has not been nearly as bad as the pain, suffering and living in the hospital that I had with the illness.

Another friend of mine had the JPouch and she regrets that she had it done because it used up too much colon. But her problem was Chrones and not Colitis. So, I don't know if this will be the same situation with you.

You might want to put off removing the rectum if the rectal area is not too diseased and not causing issues. One man that had this done had some bladder issues after the rectum and rectal stump was removed.

Sorry if this is confusing for you. But, you need to consider all of the alternatives and make sure that you have the right doctor and seek out several doctor opinions. Ask a lot of questions and ask specifically how they will perform the surgery. Also ask for a WOCN (Wound Ostomy Care Nurse) to consult with prior to the surgery so that she can mark on you exactly where your stoma should be placed by the surgeon.

I hope this helps.

Best of luck and blessings to you.

 

Reply by Whitey, on Tue May 27, 2014 11:08 pm

Hi Happy Cheeks,

Here's a vote for the J-Pouch.  I've had mine for 5 years this month.  The early days were a bit tricky but by BEING CAREFUL then (by not blatantly abusing my pouch, like some recipients seem to do) now I can eat pretty-much what I like.  Most days I can get away with 5 or 6 bathroom visits.  Urgency is a non-issue.  There'll be an urge, but I never need to go NOW, like I did with the UC.

Through subtle tuning of my diet I can all but eliminate the runs and so look after the inside of my other cheeks Wink  If I go on a binge, of course, then things can quickly get messy when the system is overloaded.

As others have introduced: the medium- to long-term performance of the pouch will, alas, in my experience, come down to luck (i.e. the skill on the surgeon on the day and your particular circumstances).  Post (successful) surgery, things will then depend, I think, 99% on your attitude and patience - particularly for the first 12 months.

The freedom the pouch has given me, compared with the UC (and also, with regard to outdoor activity, the bag) really can't be overstated.

Anyway, good luck!

Tim.

 

 

 

Reply by livinnandlearnin, on Wed May 28, 2014 12:34 am

I had a complete colectomy with ileostomy in 2010. I have severe and atypical Crohn's disease so this was not a cure for me and we knew it would be permanent. My surgeon, who is a very specialized GI surgeon, told me that they usually leave the rectal stump because to remove it complicates the surgery as it requires opening up the pelvis as well as operating from "the rear". So I had a rectal stump, also called a Hartman's Pouch, up until a couple of months ago. For me, the rectal stump was a disaster. First of all, no one told me that because your rectum is a mucous membrane, even though you are no longer "connected" your rectum still produces some "stuff" that then comes out on a regular and uncontrollable basis, usually at night in my sleep. I can't believe no one ever mentioned this to me. The first time it happened I was so confused and startled!!! Then a fistula formed from my rectum to my vagina. My rectum was badly diseased at that point and bled frequently. They tried everything they could to get it to heal but it just wouldn't. It was like having my period every day . . . For two years . . . and it was painful too. Finally this past March, I had the rectal stump removed. It was major surgery and it obviously required opening up my abdomen/pelvis yet again. All I can say is that if I had known any of this back at the time of my original surgery, I would have had my rectum removed. Remember that for someone with ulcerative colitis, removing the colon is a cure. I have had around 8 surgeries in the past 4 years. Each surgery has further weakened and deconditioned me. I don't know what it is like to live with a J-pouch but the ileostomy pouch isn't that bad. I had a little bit of time after my ileostomy when I felt pretty good and managed to get my life back. I started dating again, going to work etc. No one ever knew I had it unless I chose to tell them. Every now and then I have some mishap with it but it's certainly no worse than the issues you can have from your disease.  I admit though, due to being fairly disabled from Crohn's there are things I have yet to attempt with it. I went swimming once and clearly I chose the wrong bathing suit. I haven't really traveled either. Other than that, it's not that big a deal. I thought it would be much worse as I'm sure you do. Good luck and feel free to ask me anything! I promise I'll give you a straight answer.

Reply by livinnandlearnin, on Wed May 28, 2014 12:53 am

Sandi--I was just wondering if you have any tips for swimming with an ileostomy. I tried it once and I clearly need a different kind of bathing suit. My pouch sits kind of high (I'm high-waisted) so I can't wear a two-piece. I tried a tankini which actually covered me completely. It the top kept floating up and showing my pouch. I guess I need a one-piece. Any tips on keeping it from showing? How to keep the pouch secure? Etc.

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