Bleeding after ileostomy

Hi Sheila, yes I remember speaking to you previously. Still not sure if I'm going to have a reversal - the surgery is still a bit raw for me at the moment so will think about it.

But good to know that I can use something to reduce the bleeding.

Thanks.

So great to hear your Son is doing so well still. X

Hi shal, yes my son was reluctant to opt for surgery again but time was a great healer. His attitude when he went to John Radcliife Oxford was that they wanted to remove the stump anyway and the surgery was minimal and keyhole and they said he would have a good outcome. They were right and even though the stoma was ok he hated the mucous fistula and it was so active. He has no regrets as saying good bye to the UC was so cathartic. 

Take care. Sheila.

This encourages me too and is good to hear.

I think its just time but i think either way it will need to be removed at some point due to the UC still being active.

Thanks. X

Hi there, sorry about the medication problems, hope all goes well for you. My son is lucky that his options have worked out, just shows that the surgeries and the treatmnets are still variable. Damn disease.

Hi sheila

I'm new to this forum. I have an 8 year old son who has had his colectomy due to UC, and now has an ileostomy. Doctor said he would do extremely well post the surgery but he has been losing weight and I'm so concerned. Can you please share any thoughts? I'm worried if he will even grow up. Please advise

Hi, what a shock for you all at such a young age. Has he been seen by a nutritionist? there is alot written about post ileostomy diet on Crohns & Colitis charity website. Hope he is well medically as the surgery is tough esp if ill before. Your Doctor should advise about keeping hydrated, drink twice as much as normal as colon was used for water re absorbtion. Diet should include more salt than the norm too, so my son drank several isotonic drinks a day such as Lucozade sport, not carbonated. There is a recipe online to make your own, basically water, squash, juice and some sugar and salt, your choice of flavours. My son was so skinny that he preferred to eat many small meals a day and added healthy snacks such as Complan with full fat milk to gain weight. He ate several bananas a day as he was low on potassium and they are a good source. The vegetables should be overcooked as easier to digest and pass through stoma. Avoid difficult to digest foods such as sweetcorn and mushrooms and whole seeds etc. As he is so young a nutrishionist may suggest food additives such as high protein drinks to supplement. Have they asked to keep seeing him at hospital and weigh and measure him as he is probably below average for growth, height and weight, and at risk. My son was on their low weight chart and shown to be at risk for medical complications if he didn't catch up. He took about 1 year to regain weight and add muscle again. He is now fit and strong again and eats loads of different foods, one of the benefits of losing the bowel completely and hence the UC, food without pain was a perk!

Have they checked for anaemia as common after UC symptoms? They can treat by iron infusions. 

Please beware of DVT as up to 3x more likely if an IBD sufferer.

i wish you well, such a scary disease. Sheila.

Thanks Dadasdad, I remember speaking to you before also about this. That's a shame the suppositories don't agree with you, have you tried the foam. Not sure if that would help either.

Still not sure what I'm going to do, still early for me to decide but good to know your health has improved. X

Thanks bustergut1, im seeing the stoma nurse next week so will discuss with her. They may just give me some suppositories to use for a while.....let's see.

My case is similar to yours, nothing worked for me and I was unable to take steriods so I was finally put on infliximab infusions. After my 4th they told me that I had produced antibodies so it wasn't working - I had 3 options, double the dose, try vedolizumab (another infusion which would take another 3 mths to show any sign) or surgery!

Like you, at first I was like I can't have surgery but the more I thought about it and read other people's great experiences I just said to the consultant I'm so fed up just take it out! Dramatic I know.

So 5 weeks ago they removed my large intestine and I must tell you it's the best I've felt, able to go out and not plan my toilet stops! The bleeding that I'm getting is only when I do sit on the toilet so it's not all the time.

I just wish I had had the rectum and anus removed at the same time!

Good luck with surgery and if you do have any questions let me know. I won't go into detail and give you a straight answer. X

Hi Shal75 thanks for your reply. I'm 60 yr old female. i first became ill in June 2013. Had diagnosis Aug 2013 & then after that lost 2 stone in weight in 6 weeks. Given steroids 40mg daily reducing over weeks. Pentasa, azathioprine, ( reacted) azathioprine plus alluprurol (.reacted) infliximab, humira, nothing bought me into remission every time I came down off the steroids, surgery discussed June 2015. But I couldn't deal with it & then broke my wrist. Query effects of steroids. Hospitalised December 2015 .Vedolizumab started still on steroids. Stopped steroids February 2016. March-September felt really ill aching joints , stiffness, fatigue awful , inflammation in bowel low but showing on blood tests. October started bleeding , back on steroids but no relief. Towards end of November taken in to hospital for 5days steroids by cannula. Came out of hospital 2. weeks ago 60mg a day! 😳 Reducing over the next 7 weeks. Surgery discussed again. The phrase 'run out of options' was a lightbulb moment. Like you say I've had enough & want to get on with my life!

Hi Shal75 thanks for your reply. I'm 60 yr old female. i first became ill in June 2013. Had diagnosis Aug 2013 & then after that lost 2 stone in weight in 6 weeks. Given steroids 40mg daily reducing over weeks. Pentasa, azathioprine, ( reacted) azathioprine plus alluprurol (.reacted) infliximab, humira, nothing bought me into remission every time I came down off the steroids, surgery discussed June 2015. But I couldn't deal with it & then broke my wrist. Query effects of steroids. Hospitalised December 2015 .Vedolizumab started still on steroids. Stopped steroids February 2016. March-September felt really ill aching joints , stiffness, fatigue awful , inflammation in bowel low but showing on blood tests. October started bleeding , back on steroids but no relief. Towards end of November taken in to hospital for 5days steroids by cannula. Came out of hospital 2. weeks ago 60mg a day! 😳 Reducing over the next 7 weeks. Surgery discussed again. The phrase 'run out of options' was a lightbulb moment. Like you say I've had enough & want to get on with my life! My concerns - the op, pain relief, how it will look, how will deal with it , regrets. You've done brilliantly if 5 weeks.

I still don't understand why they don't remove everything in one go. My son was left with just anal muscles after second operation. This was why he was able to then have the j pouch op and the lower part of the small intestine formed the pouch and it was connected then to the rectal wall. The removal of the "stump" could have been at the same time as the ileostomy. It still leaves you with the opportunity to have the reversal if wanted. Especially as the stump has UC symptoms and is expected to be removed as could lead to cancer later on. Please explain if you know more than me. My son excretes from his anus now and uses the muscles to control emptying. He has no idea I talk about his bottom! I still do as I hope I can be helpful to others with silmilar problems. We would have liked to have got some feedback when he was deciding what to do next!

Meant to mention key hole surgery, is it recommended for elective surgery? My son has a big scar as emergency surgery, would have liked to have had keyhole.  Cheers all. Sheila.

Hi shelia91262 I've got another meeting with the colorectal surgery on 21st. Think that's for me to say yes or no. Still got lots of questions so will try & ask about the rectal stump. Will have All of mine removed. When it's gone it's gone . All of it! Wouldn't personally go through surgery & risk bleeding from stump if colitis (proctitis). So my ulcerative colitis extends beyond the left side across to the right. I personally wouldn't want a j pouch as still go 6-10 day & I don't want further ops to rejoin pouch to rectum. I'm expecting keyhole surgery. My comments based upon what I've been told for my case so everyone individual & must choose. Must depend upon lifestyle as well & what you want your life to afterwards. Relationships etc. Sorry I don't know how old your son is. Lots of supportive websites may answer better than me.

Hi B, we chatted in the past when son age 27 had his stoma after perforated colon required ileostomy. He is lucky that he has had so much success with the j pouch. After having such a hideous time with his severe UC that almost cost him his life with the perforation he waited over a year to fully recover before starting on the surgery route again. His long scar from the surgery meant he took longer to heal, keyhole must be a quicker return to normality. The j pouch formation and stump removal was a much faster recovery as they opened up the original scar, removed mucous fistula and end of colon all in one go. several months later when they were happy that pouch was waterproof they used key hole to attach to rectum and remove stoma. Son drove home!. He goes 3 or 4 times a day and no accidents. I am sure that his youth helps but others have good success too. He is so sporty that it was that that drove him to choose J pouch and he so wanted the fistula gone! It has been 18 months now and no one would guess what he has been through apart from the long abdominal scar. When I ask he says that eating anything he wants and no meds are his main causes for relief that all UC has gone. Good luck in your decision making.

Hi Sheila,

Just read one of your posts. I had emergency ileostomy 3 months ago. Still have uc in stump which surgeon wants to remove. However I am hoping for later reversal and thought this was not possible if rectal stump not present. Your post implies otherwise, or have I misunderstood ? Please can you clarify for me.

Thanks for your help.

Susan