Bleeding after ileostomy

HI Val it’s nearly a year since my op & Stoma bag. Do you mind me asking what problem you’re having? Do you want advice on meds or options? B

Hi Val - I had the same problem after my Operation 2 years ago and struggled until I had the rest removed and the Stoma made permanent. The residual colitis in the lower part of my bowel made things tricky and I just felt under the weather. Suppositories were painful to administer. Earlier this year I had the second part of the operation to make the Stoma permanent. I decided not to go down the J Pouch route. I'm in pretty good shape now and am as healthy as I've been for 6 years. Good luck.

Thank you for the info . Can I ask why you didn’t want the J pouch? 

Thanks for the very reply it’s the bleeding and the urge to go to the bathroom that scares me a bit . I think it’s a stress thing that brings it on .. I get nervous and I feel like I have to run to the bathroom ... old habits  

And trying to get used to my bag is another issues I am having 

It’s all so new I feel helpless at times

Hi Val - it was an easy decision. J Pouches can go wrong and involve being so close to toilet you're actually no better off so there's a third dose of surgery and a diet of Imodium. A close friend had this experience although there is a Lady on this Group who is eager to share the positive experience of her Son's J Pouch but I'd decided early on. I've grown use to my Stoma and live my life fully, I've got use to the Stoma and rarely think about it. You may feel in limbo while you take it all in. I am a 60 year old married man so do not feel conscious about being single and meeting someone new, that helped. Although I was terrified about the effect on my Gentlemans Parts this proved not to be an issue. Some of the ladies who comment on here talk in the same terms about pregnancy etc. 

You just need to take your own time, advice and gather as much information as you can.

HI Val it’s sounds like you’re in very early days of having your Stoma & are probably in a bit of shock about what’s happened to you. It took me nearly 4 years to make the decision for surgery as all meds failed to help me & I’d been on steroids all that time. The doctors were talking about surgery very early on in my illness & I’d resisted thinking I could beat it. They will only do surgery if you need it. Im sorry that you don’t appear to be getting Any support. I’m in the UK & in my personal case I have Ibd clinics with amazing nurses & also Stoma nurses that I can ring anytime. Rang them yesterday as I think my Stoma (Stanley) has got smaller again even after Nearly a year! And yes, through the nhs we get our bags free on prescription & once we are 60 we also get our meds free. I do wonder what I would do if all of that stopped as I found it hard to afford all the different meds previously before I was 60. I posted a lot on this website after my op- to hopefully help others. See my previous comments if it helps you. I have very sensitive skin so trialled some bags before op. That also worries me if I become sensitive to the ones I use. There are Always answers to problems! I have made lots of errors since having ‘Stanley’my Stoma & realised it’s because I tried to cope alone. We have a uk society that helps people with Crohn’s & colitis. You could check out their website. They will answers questions. Also get back to your Stoma nurse or Doctors for support. 3 weeks is no time at all physically & emotionally. Top hint- your Stoma will be shrinking in size so if your bag is leaking or uncomfortable it’s nothing you are doing wrong you need to have the hole in bag resized. Another error I made! Please ask any questions you like- think I’ve been through it all! 

Where I’m at presently- my rectal stump still bleeds & just like Darasdad who posted I find suppositories difficult & sore to use & don’t actually help. So I’m seeing Doctors again on 17th to discuss removal. I Won’t go j pouch route as I think it would take me back to frequent trips to loo & other problems. My original op was Feb ‘17 I stopped steriods end of March & was bleeding by April. The consultant confirmed after examination that the rectal stump was inflamed with colitis. The longer it bleeds & is inflamed the more the chance of cancer as time goes on so they have to monitor what’s going on. 

Sorry this is such a long post! Please let us know how you’re getting on. Hello to others that posted! B x

Morning Guys - I just noticed the comments about costs. If you are not 60 buy an NHS Prescription Prepayment Certificate. It's about £12, can be purchased on line and entitles you to free prescriptions. I order my Stoma Bags from Am Care who arrange a repeat prescription from my GP and they're delivered to home. I get 60 at a time.

Bustergut1 - the biopsy on the tissues from my rectal stump showed severe UC. I had this removed last March and the recovery was much, much quicker. It's a delicate operation and takes about the same amount of time but somehow it was easier, perhaps because my general health was better.

Hi Darasdad1

I don’t know why I’m more nervous about the second op. 

Yes, my husband funded  a years pre paid prescription in the end as I wasn’t working due to illness.. I once had my meds changed 5 times over a two week period & it gets ridiculous with costs. I get bags Medilink & they only send 30. I’ve ordered between pre cut & uncut as the cutting accuracy varies. Do you ever have a problem? B

Hi - I've learnt a lot, I think, but it's all personal to me. I now use Convatec 35mm (1 3/8inch) pre-cut Stoma Bags. Initially they were larger but things settled down and this is the one that fits me best. I change mine once a day simply because I'm used to showering or bathing every day and it's just easier. I also were a soft, flexible skin coloured hernia belt; initially this was because of the risk of a hernias but I now feel happier wearing it as it holds the Stoma Bag close to my tummy. After the first operation I was really weak, could barely walk and it took me a long time to recover. Following the surgery to remove my Rectal Stump (the worst medical term invented) I was back to normal within a week. Okay I sat on an inflatable pillow for a few days and one of the stitches did come away but the Surgeon said it would heal over and it duly did. We went to Italy six weeks after the operation for my Wife's Son's Wedding. I'm feeling really good now and have gained 2 stone. I eat almost anything and visit the pub once or twice a week. In the 28 months since my first operation I've had one faulty bag and one very minor leak. I always carry a change with me but have never used it. I have no doubt that I made the right choice not having a J Pouch. Not taking medication is the best thing in the world in my humble opinion. Some of the UC Meds are fairly grim. Good luck with your next operation.

Yes I want to get into to my GI in the next few days to talk about the bleeding . I was bleeding for months I don’t need to lose blood again . While I was in the hospital in nov and dec I had 4 blood transfusions because I was losing so much . I just assumed with the surgery it would all stop 

Now it’s no where as bad but I don’t want to see any blood at all. So confused about everything .. the one thing I have is family support I am lucky my kids help out so much . My boyfriend understands and supports me with whatever I decide to do . I do have coverage for prescriptions just not stoma bags. 

HI Val

Following on from your postings last week I wondered how you were getting on?  B

Sounds similar to me Val, I was sat at home for around 6 months not being able to go out as I was bleeding constantly and nothing would stop it. They finally told me that my colon had swollen so much that they feared it would burst and suggested they remove it. I literally had days to think about it. But came to terms with the fact that it's going to save my life. I think you just need to change the way you think about it. It probably has saved your life also, no more running to the toilet, you can go out, eat what you like..... I think after everything we have all been through with UC you will eventually see that this is a blessing and like me probably think why the hell didn't I do this earlier. I mean don't get me wrong, it's taken me a year to get used to getting up in the night to empty it but that's probably the only thing.

At the moment I've decided to keep it because, I read into j-pouch and because it's a man made rectum I fear that down the line if something isn't right in there I'll have to keep going into hospital and also the fact that because it's essentially your small intestine made into the rectum your poop will just come out a bit like how it is with a stoma, there is no kind of warning and at first they say your going to the bathroom A LOT. Plus like you said it would mean another 2 surgeries. Even if I keep it it will mean 2 but there not as big.

You have 5 years to decide so take your time don't make any harsh decisions yet!

Val where do you live? I'm in the UK and saw a stoma nurse who gave me samples a few days before to try and I can call them anytime for help or advice even 3 years later! I think if you don't have that support maybe try different products and see which one suits you best, I guess you having to buy them can be costly though. It's funny here in UK as soon as you have this operation all your medical supplies are free. (I use a one piece which opens at the bottom, the only thing is I do need to change it everyday. I usually do that at night time So the bag is fresh and less likely to balloon due to gas lol I use a spray to get the bag off, then I have some wipes and water to clean it, it became quite sore So the nurse gave me some cream which I put on then realine my previous template and draw a new hole in the bag and cut it out, stick it on....good to go. Used to take me at least half an hour or more sometimes now I could if needed to do it in like 5 minutes hahaha)

So the months before where I was on several different medications, suppositories, enemas I had to pay for them all! Crazy.

Val, give it time and don't rush into any big decision just yet. X