Elective Colostomy Surgery for Ulcerative Colitis

Digestive health
1

Hello everyone, my names Andy. Some of you may have been following my rather extensive discussions from a few months ago about my digestive problems. So if thats the case then hello again! haha

Anyway I would like to throw a question out there about something I have been struggling with for the last 3 months ( since I've been feeling better ). Would it be over-reacting for me to go to my doctor & ask to have a full colectomy & a stoma? The works basically, like permanantly?

I mean for the last 3 months I have been quite well. My Colitis calmed down in late February. I was so relieved to be better, after having been in hospital twice, becoming a recluse & not leaving the house for 4 months for needing the toilet 6-10 times a day, losing blood every time, going from a healthy 13 stone to just under 8, suffering from constant pain/nausea. 

Sorry. I'll try to not waffle on. These last couple of months have been great, more or less. I mean they've been fantastic, no pain, no bleeding, normal stools. I've felt so much better. But at the same time I'm not 100%. I've started volunteering at a local shop, I've been going out with friends regularly, but I'm not fully relaxed. In the back of my mind I am always worried about needing to go to the toilet. Every time I do need to go I dread looking into the bowl in case theres blood. I hate that every time I go out somewhere I have to make a mental note of where the nearest toilet is. As you can imagine I fear going anywhere new & I am nervous of long car journeys.

I know pretty much all about the surgery for Colitis. I know that there is a few different surgeries like the J pouch & the ileo anal pouch and a couple others. I know that it'll change my life in another way having a stoma and a bag for my waste. I am fully aware that I will have to empty it 2/3 times a day & change it once or twice a week. I know all there is to know about it. I got given a big booklet about Crohns & Colitis & I've read it cover to cover about a hunded times & I've been to all the websites it linked me to. So I know what I'd be getting myself into.

Is it completely stupid of me that I WANT this surgery? I'd hope not. I'd really like to not have to take medication every day. I'd love to have the worries lifted from me & be able to relax again. I don't want to have anymore flare ups where I feel like I'm on my death bed for months at a time. I'd give anything to stop worrying that the next time I see blood in my stool it could potentially be cancer. I'd like to be calm and be me again. For the last 4 years I feel like I've often been the worst version of myself.

People have said to me that it's not "essential" and not "necassary" for me to have surgery if I can take the medication, which I can. But I find myself asking is it all worth it when I have the opportunity to be rid of it completley with a couple hours on the operating table followed by a few weeks in recovery? In the grand scheme of things thats nothing compared to the weeks & months I've spent over the last 4 years being so ill & nervous that I can't be away from home for any reason/length of time.

I'm only 22 & I believe my bowels have robbed me of some of the best times of my young life. These are such important years for me. I've struggled to find a job because I feel restricted by my bowels. My social life is struggling, it's affected one or two relationships slightly as well. And its often done wonders for my self esteem *sarcasm*. 

...So yeh what do you guys think? Should I go to my doctor & tell her all this? 

Let me know tah

Andy

2

Hi Andy,

I did exactly what you are talking about and had the op 4 weeks ago, and I feel great now. I had my large bowel removed and an ileostomy and in a years time i might have the option of a pouch! I too was feeling quite well at the time of my surgery but am glad I decided to elect for the surgery instaed of it becoming an emergency one day! The stoma nurses measured me and properly sited where my stoma would be so it doesnt show above jeans and isnt in a crease on my stomach! If its done in an emergency they obviously do it while you are flat on the table and I have known one person to have a nightmare because the stoma was in a crease so she couldnt get a good seal and had a lot of leaks! Mine is in a great spot and I havent had any problems at all.

Now looking back, what I thought was well wasnt as good as I feel now. I was on Mesavant, azathioprine and steroids and now all of them are out of my system I am feeling less overloaded with medication and my system feels relieved! I know the thought of a stoma is scary but its really not that bad and it hasnt changed the way I dress or eat and I dont find I have had to change my life in any way! I will start exercise and swimming in a few months time once I'm properly better after my op.

My stoma nurse was in the theatre watching my op and I asked her later what my bowel looked like and she said it was really awful looking. She could only see the outside and the inside is where the disease shows most and she said it looked grey compared to my healthy bowel. Once I heard that I felt relieved that I had opted to have the operation because who wants something thats gross looking and almost rotten insode their body! Imagine how much better I feel without that and all of the medication. I had all of the worries you had right up to going to sleep for my op, but when i woke up i felt really positive and realised it was just being scared of the unknown that was making it hard. The stoma is no big deal really, its taking time to find the right supplies that suit me and it also hasnt affected my relationship. so its not all bad. Its a tough descision but there is lovely light at the end of the tunnel. Take care

Jenny

3

Hi Andy,

I would love to hear what you decided to do. I am currently also considering elective surgery.

I have been on a constant flare for the last 8 months and my disease has progressed much faster than expected. None of the medications are working at the moment and I keep getting told they take a while and to keep waiting.

I am 29 this year, have 2 young kids and a fantastic supportive husband. I hate that I cannot enjoy them properly at the moment and I think we all deserve better.

My poor 2 year old sits outside the toilet door and "reads" me books to keep me company. It doesnt feel right or fair. I will be talking to my gastroenterologist about in a few weeks but would love to hear you experience in the meantime.

Karen

4

Hi Andy

I have had bowel problems for about 4 years now. It started after I collapsed and had to have a laparotomy. Since then I suffer with my bowels and constipation. I've had 4 hospital admissions this year with suspected enemies collitus. Apparently this is being put down to scar tissue and adhesions on the bowel as a result of the surgery. The hospital has now said I will probably always have this problem. They said that when I'm admitted they try to get the blockage moving if this happens there is no need to operate, if it doesn't then they will have to operate. So now I'm just waiting for the next collapse. I feel desperate, I don't want to go out in case I collapse and my relationship has suffered as our intimacy has virtually stopped.

i was wondering could I elect to have a stoma on the NHS or on private health care. I feel desperate, any advice you could give me would be great. Thank you so much.