Stoma forever

[Tired45]

Hi I have had slowvtransit constipation for many years until my large bowel and colon slowed to a stop. I had an iliostomy in April 2016 with a view to reversing. Now I have terrible trouble with mucus dripping out bum without warning and stomach pain. I now am booked in for collectomy to have large bowel and colon removed and end iliostomy done. This will be permanent. Has anyone had this done and if rectum not removed will mucas still be a problem. My surgeon says mucas will still be around if rectum stays and I can have rectum taken out later on. ???

[Howlinwolf999]

I’m not sure if this will help, I have suffered with Ulcerative Colitis since 1976 and in mid April 2016 I had a pan-proctocolectomy with end ileostomy. This involved removing the colon, rectum and anus and creating an opening in my belly for the stoma. Surgery went OK and my belly wound healed quite quickly. I used a few drops of Bio oil on the wound twice a day once the glue used during surgery had all gone and there was no open wound. The wound on my bottom has taken much longer to heal. Initially I used Cavilon No Sting Barrier Film Foam 1ml applicator twice a day subsequently reducing to once a day. The District Nurse came every fortnight to review how my bottom way healing and I was finally discharged by the District Nurse in mid November. I had been advised that until my bottom was fully healed I should refrain from swimming to avoid picking up an infection, but from mid November I was cleared to start swimming again. With everything removed there is no mucus discharge, blood or any other kind of discharge now, it’s all sewn up and healed. It was a nuisance in the early days as I had to wear a large pad on my bottom progressively reducing in size until I stopped after a few months. I had been give some very poor advise before surgery and was told to sit comfortably it would be helpful to have a ‘ring’ cushion to sit on. It is really important not to do this, I believe that by sitting on the ring in my first couple of weeks effectively pulled the wound apart causing the healing process to be extended much longer that would have otherwise been the case. When the District Nurse visited she strongly advise against using the ring for exactly that reason. It is not for me to advise, but I have to admit, having read what a number of other ostomates experienced not having total removal, I am glad I had it all done in one go and got all the surgery sorted in one fell swoop. The only real issue I have is that like many ostomates I have developed a parastomal hernia and I am not entirely sure how I could have avoided that. I rarely get any pain, in fact I think post op I think I have only had one belly ache and I think it was more to do with the curry than anything else. I hope I have not gone on too much, but I think to make an informed decision it can be useful to hear other views and then make up your own mind.

[stiggy]

Hi I'm lex I'm 56 I've had a illiostoma about a year ago I've since had it removed for about six weeks then my bowl burst I'm a luck man to be alive so I've now got it back but I've had pain from my back side because I've still got mucus so I've had 2 tries at removing it with suposatres but now I'm in more pain than I was so I had to see my consultant hope you get better soon hope this helped lex x

[tekapo13]

I had a pan-proctocolectomy leaving me with an ileostomy. My large bowel including the colon, rectum and anus were removed in my case because of grade 4 cancer. My stoma in the abdomen works fine fortunately. Initially after the operation the stoma failed to work but then it settled down and functioned and even though I was against having this procedure in the first place I am very happy I did now. I did have a small amount of discharge from the derriere would initially but that seems to have cleared up. It was painful to sit for a while, but I made sure I exercised from the word go if only to the end of the drive then round the block and so on. Almost one year on I am doing the Park Run which is 5K. It takes time to adjust physically and emotionally and do not be afraid to ask the stoma nurses and consultants anything the more you learn the better prepared you are. Wishing you the best

[Bec_carer1]

My partner had a colectomy on Aug and all colon out but anus /stump left and gets mucus discharge roughly every few days. He does get warming though as though needs to go to the loo so it's manageable & he will keep stump unless it develops ulcerative colitis

[Bec_carer1 in reply to Bec_carer1]

He developed UC back in rectum around xmas time. Now waiting to see a surgeon for proctectomy and abdominal wall reconstruction. Despite following all advice & not lifting anything he developed a hernia.

The mucus & discharge from rectum has been regular & hes permenantly anaemia & tired from the amount of blood he loses.

I find it interesting to read all the advice post rectum/anus removal as we know it will be long & arduous but hopefully lead a better quality of life long term.

[gilmerton63]

I had to have hartmans hook up 2 years ago. They have now told me they cannot reverse my stoma. This was done as an emergency,I went in for gall bladder surgery and they cut my large and small bowel they managed to repair small bowel but the large bowel they could not repair. I still have my anal stump and was shocked when I first lost mucus from my bottom,I didn't know it was possible. I now use a suppository once a week. This seems to get rid of everything.

[bern65]

Hi there. I can share my experience with you which may help you decide what's best for you. I'm 51 and have been living with my new arrangement for 4 years ish. Doesn't matter when now. I elected to have surgery after suffering for years with UC. Steroid dependant I was told. I did some research and leaving a bit of the rectum to work to fashioning an internal pouch was proposed as an option. On the day of the surgery I met with my surgeon and said I had read a lot about problems with discharge and infection. He confirmed what I had read. I would also have to have further operations and I would still be required to go to a toilet numerous times after eating. .

I advise him that instead of multiple ops I wanted this sorted once and for all. This is how I came to having a permanent iliostomy.

I've cycled coast to coast twice since I recovered and swim in open water in the summer.( with a wet suit )LOL

I really get caught short where I absolutely need a toilet and accidents are very rare. It all takes time and you learn from experience and talking to others.

I am now free from that urgent and obsessive need to know I'm close to a toilet. I look after my stomach, stoma and appliances and they look after me.

All the best to you.

PS. I contacted every supplier I could find regarding appliances samples and over time I've found what's worked best for me. My advise is to challenge what you are told. Experiment, there's choice.

Regards B