Bleeding after ileostomy
Posted , 9 users are following.
So I had an ileostomy 5 weeks ago to remove large intestine, rectum/anus still intact. I'm finding that I'm still bleeding from the back, now I know this is not uncommon but I just wanted to know if this is left and not removed are there any complications. I know a lot of people leave it attached and have it removed later on but what happens to the rectum/anus or even the rest of the body where it's been attached if it continues to bleed?
I'm not seeing my surgeon until late January but just wanted to know if anyone had any thoughts!
Thanks.
0 likes, 38 replies
val42087 Shal75
Posted
Thank you for sharing your story and yes it sounds like my life . I did run to every available toilet and my life was on the line the last few weeks in the hospital. I live in Canada 🇨🇦 and work for myself so I have no drug benefits to supply the bags . The home nurse comes twice a week to change my bag but that will only last another 2 weeks then I am on my own . I wish I could change it every night .
I worry about the J pouch also . It’s just body image is affecting the way I see myself right now . I am only 46 years old female and I want a normal life again ...
I like what you said about not rushing into it ... that’s all I thought about in the last few weeks is I can’t wait for my 3-6 month window for the surgery . But now I think I need to step back and just concentrate on right now.
Its a big decision I have to make ... think I will do a bit more research on the J pouch. Thanks again
Shal75 val42087
Posted
Maybe ask your nurse if there are other bags you can use, the everyday ines but then this will probably mean more cost in your part. Maybe on her last 2 visits you should try and change it by yourself with her there, just in case?!
Your stoma is very new, try not to think about - how will I look in a dress, what happens on holiday....
Just try and get used to it for now and remember it probably saved your life having it done.
I actually bought some covers for it, when I went back to work I'd wear it out with pretty covers covering it hehehe.... that's how comfortable I became with it!
I'm glad you have good support around you, keeping talking to them and us. Remember it will get better and easier.
😊
jeff07718 val42087
Posted
Hi Val, I have written on here as Sheila 91262 but I can't remember my password so I started under a different name, my Husband's!! My son had an extremely successful illeostomy reversal j pouch in Oxford UK. He is about 3 and a half years now post J pouch and so happy. His large bowel removal saved his life and he took about a year to fully recover, gained weight, healed and gained strength but he was struggling with the stoma. He is sportsman and coach and felt self conscious running around with a bag. He also had symptoms from the stump and wanted to give the pouch a chance. No regrets, the procedure was straight forward and minor surgery and quick recovery. 2 ops and the pouch is working v well, down to 2 loo goes a day. He can delay going and has no urgency or infections. The stump was removed so no symptoms and less cancer risk. Being male he was warned that there is a tiny risk of losing nerve sense in the abdomen but he has no problem and was happy to take the chance. He took all the advice given and practised using his muscles to control output. The output is pretty liquid as less water has been absorbed from the waste but he doesn't need to thicken with food additives as some do. He was advised by Consultant at Oxford to have the stump removed anyway so went ahead with the pouch. He was determined to go ahead with reversal as going back to a stoma is quite simple if it doesnt work. There are several pouches that can be made which are suitable for different circumstances. We chose a department and Consultant who are very experienced at the pouch formation and have excellent after care. Thank you NHS.
You can read his details under my writing on here as Sheila 91262 as I originally wanted advice from someone who had the ops before he started on the journey. He has a small scar from where the stoma was removed and the site was used for keyhole surgery to form the pouch from the end of the small intestine. I think his goal was to sit and excrete from the usual passage again and have no external collection, after all the bag collects waste and now his bag is internal and made from his own tissue.
Now he has no disease, no drugs and no stoma so can run as much as he wants. He was young and wanted normality. He has a new normal now.
I have spoken with several on here about UC and pouches etc and I hope all are doing well. This bas**** disease needs a cure!
Sheila.
susan260867 jeff07718
Posted
Hi,
Thanks for the reply. Good to know it works and glad your son is doing well. I am going in tomorrow for j pouch creation. Initial stoma was created as a result of perforated bowel and unfortunately when they removed it they found a cancer as well. Only small and stage 2 so having chemo afterwards. Maybe this was fortunate to fi d it early. Anyway am not looking forward to it or the recovery and can't wait for the day the stoma is finally removed. (Consultant says I have to have op in stages to allow healing) Anyway thanks again
Susan
jeff07718 susan260867
Posted
Hi Susan, my best of luck to you. What a difficult time you have had but as you say a great piece of luck to find the cancer early. My son found the creation then joining surgery pretty easy going esp compared to the perforation and then ileostomy. The hosp stay was short and not much pain. He was pleased they tidied up the original scar and incorporated the mucous fistula scar with it to neaten and reduce. When the stoma went the small scar was great.
I will mention what I say to everybody with surgery, if you don't already know, the likelihood of a blood clot with IBD is raised so they need to take care of your DVT risk after surgery and after you leave hosp with regard to the anticoagulation they give you. My son was neglected unfortunately and had a DVT after ileostomy and had to have treatment for that. Look on internet for further info. Let us know how you get on.
Regards Sheila.