Thinking about Stoma

[Gilead]

I have UC. I have never been in remission apart from the six week break between 40>10 prednisalone.
Am thinking of trying one last biologic (Tofacitinib) and then thinking fuck it, let’s do this. I’m 62 and fed up!
Anyone with experience, I’d really appreciate hearing from you.
Thank you!

Experience of a stoma?

Yes please!

Me me me!

I have crohns. Am also on azathioprine and amgevita injections. Got my large bowel removed and an ileostomy 6 years ago. Best thing I’ve ever done! I wouldn’t reverse it if I could.

Go into it with the right frame of mind if you can. I know for some people they regard it as the worst thing to happen to them. But since the very start I knew it was a positive, so acted positively. I was up and out at support groups 3 weeks post op and the people there couldn’t believe it. One said she didn’t leave the house for so long because of her stoma. I didn’t ask why.

You get to know what foods react badly to it. Raw carrots does it for me, but can eat anything else so long as I chew it enough (so much so I’ve put on a fair bit of weight since I had it!)

I’m 34 now, was 28 when I got it. I wear bikinis, low cut jeans, dresses, anything I want. Never had a negative word said to me!

Please just ask if there’s anything specific you want to know, but I’d recommend it to anyone struggling with IBD.

My husband had a stoma last year (also due to bowel removed). He wouldn’t go back to how he was either. He can eat most things without problems. His seems to fill with foam/wind at night, so he does have to get up in the night a lot. My friend’s husband has one and his is much “calmer”!

No experience of stoma but just want you to know you have my sympathy.

Your experience sounds like mine, I have UC, i'm currently on Pred, waiting to start Vedolizumab after Adalimumab and Aza failed.

Do you have facebook? The Crohns & Colitits UK forum is excellent. Lots of people on there with real experience and great advice.

Thank you everyone, I’m not anti surgery, but do feel I should try one last biologic, particularly in the middle of a pandemic. I would/do feel okay about it, less pain hopefully and a slow crawl round the shops is appealing. I honestly can’t manage a whole supermarket shop without going to the loo. A life would be good!

I had my one and only UC flare and ended up with my colon removed and a stoma in its place. It took a while, but I actually got on pretty well with it. There were instances where she would wait until the meeting I was in was completely silent to make noises but to be honest most people thought it was stomach noises. I had a j pouch formed during my second surgery and then plumbed back in a year later. I love my pouch, but I could cope with having to go back to a stoma.

How does the pouch work tippytappytoes?

Hello,

I've had a colostomy for 4 years now... love it (compared to pre-bag life). In an ideal world, I would not have one, but the medical issues I had made my life so unbearable.

Cons:

1. NOISE. The biggest complaint, especially the first month or so after surgery. It is relentless and embarrassing. HOWEVER, it settles quickly to post meals and there are foam mufflers you can buy to quieten it down. It is typically silent 99% of the day now, and the only noises it makes are similar to stomach gurgles. I have made my own muffler out of a old piece of cloth for a slightly flatter profile. Either way, there is a solution to it
2. Raw veg. My experience is that they don't digest well and can cause blockages. Less of an issue with a colostomy but you can still be constipated with a stoma and it feels uncomfortable. Chewing raw veg well is a must
3. Bathroom smells. It's pretty disgusting, worst than normal people, but a candle and an open window remedy it quickly.
4. I worry about finger/arm dexterity when changing bags when I am a lot older but I am early 30s, so a long way off. But something to think about in terms of independence.

Pros:

1. Freedom. No worrying about where toilets are. Holidaying is a non-issue, no problems on flights or going through security. I've never been patted down or stopped. The adhesive can pull away slightly when hot or sweaty but it never peels off.
2. Food. Enjoy a usual diet without worrying about what might upset your stomach.
3. Mental health. My mental health has improved dramatically since having mine. My stomach issues were my sole focus and concern pre-bag, they just don't exist anymore.

As a PP said, its success will be largely determined by your mindset. If you want it, you will adapt to it and enjoy your life again. I am very fit, gym, run, drink, do everything as I have done previously. And assuming you are in the UK, you will have a medical exemption cert so all products will be free to you, which is reassuring. Also, any worries you might have about being intimate etc again will be largely determined by your mindset. My bag does not take anything away from me, if anything it makes me better in all the ways I can think of.

Also, the experience you might have will differ depending on if you have a ileostomy or colostomy. My understanding of ileos is that there are bigger issues with dehydration, night time bag empties, regular emptying etc but I do not have one so can't comment on that.

Send me a PM if you want a chat, I am a big advocate of stomas and how life changing they can be. But it is also a huge decision and not one you should take lightly. Although I doubt you'd have written the post if you were not seriously considering it.

@Honeyroar

How does the pouch work tippytappytoes?

It’s called an ileoanal pouch and they form it from your small intestine. I had a J Pouch. It’s not for everyone, but I have a very good pouch with good control (I can fart whilst walking - which normally isn’t a thing to be proud of) and I only need to empty it 3 to 4 times a day. Obviously more if I’m eating all day ie like Christmas time. There are difficulties ie too much fibre can affect output etc but on the whole it was the right decision for me.

@nonmum456. I couldn’t go out this evening if I wanted to, and I’m exhausted. I’ve been every fifteen minutes since half six. This is not unusual. I frequently get up two or three times a night. I’m very serious about this. I escaped D.A. Cans didn’t go out other than school runs and supermarkets for over 20 years. Now I have my freedom I’m not going to allow this to dominate my life. This really is it, last biologic, if no good, stoma .
Thank you for sharing your experience.

@Tippytappytoes I don’t think a pouch for me is a great idea, I’m getting on and as few operations as possible are the better option.

Thanks for the explanation Tippytappytoes. I’d not heard of that.

Firstly, you poor thing. It’s having such a horribly detrimental impact on your life and I know long term steroid use isn’t nice.

DH has UC. He has had both ‘end’ and ‘loop’ ileostomies in the past but now has the Jpouch someone else described above. However, he now gets UC-like symptoms in the pouch (this is 10 years after having the pouch surgically created and he’s now in his 40s). So at some point, he may need to go back to a stoma.

He adapted well in general to having a stoma despite being so young. Like others have said, it could be a little noisy and he also had problems with the bag inflating, so tended to live in hoodies. Easier for women I think, to dress in a way that doesn’t draw attention to it. Only suffered the very occasional leak (I’d say 2 or 3 times in 3 years). Changing the bag only needs to be done once every 2-3 days and becomes routine. He lived a full life and generally it did not hold him back.

A random suggestion but have you tried probiotics? DH was advised to take VSL3 by one consultant and it really helped. They are many many times more potent than what you can buy in supermarkets and come in a sachet you mix with water.

Hi OP.
My stoma gave me my life back after 16 years of UC and being unable to leave the house. I wouldn't have a reversal as I have heard mixed things about them and would hate to go back to frequent loo trips.
I've been on long haul flights, big holidays, got married and had a child all of which would have been out of the question before.
For me it has been nothing but positive . I wish you the best of luck whatever you decide to do

@Brightstar84 Thank you. I’ve tried probiotics without great success.

@wildthingsinthenight thank you. I’ve had it for years, am now steroid dependent and have put on an awful lot of weight with them. Always amazes me that I can put on weight but empty my bowels sixteen times a day!

I really think I need to do this!

I came really close to surgery several times. I have had UC for a very long time. I became prednisone dependent and frankly quite miserable. It stops me sleeping and I gain weight.

Two years ago I started Entyvio (vedolizumab). It took a few months but it worked. I was also switched to monthly infusions rather than every two weeks. My GI doc says once monthly was the frequency used in the trials.

I have not had to take prednisone nor any other colitis med since. I feel normal now and minimal side effects.

I would highly recommend it, but it doesn't work for everyone.

I am pretty sure if I was having surgery I would go with the ileostomy as I too am older and I have read about too many people with J pouches who have problems.

Best of luck. Thinking of you. It os so very hard.

@LoveFall, tried Humira, Vedo and Infliximab. Will try this las biologic.
I’ve also been through mercaptopurine and azothiaprine as well as mesosalazine.
I really do have to consider surgery as a viable option.

Sorry if I missed you had already tried vedo. What a shame it didn't work. I am so grateful it worked for me.

Having UC is horrible. If surgery will help, then it is a good option.

Well, I had a flexisig yesterday, didn’t bother with sedation as I wanted to see what was going on. It really doesn’t look great, severely ulcerated, a couple of pseudo polyps, some granulation and lots of inflammation. Consultant will be having a meeting with the rest of the team tomorrow where they will discuss the last ditch attempt at meds or surgery and will call me.

How do you feel about that? I know with my husband they tried many things prior to giving him the stoma (several operations, removal of sections of bowel, gall bladder etc) but he wishes they’d done the stoma earlier.

I have stated very clearly that should I go the surgery route, it’ll be no mucking about, stoma straight off, no j pouch, no reversal, nothing. At my age it’s just not worth it.

Thoughts are with you @Gilead it really does seem like a very tough existence at the moment. Given everything you’ve said and that you’ve already reconciled yourself to surgery / stoma I imagine they will just want to get you as well as possible for the surgery (difficult during an active flare, I know). Sure you already are but if not nows the time to be taking a really good quality supplement and making healthy choices. The op is a big one but I’m sure you’re going to have a far better quality of life afterwards

Thinking of you so hard. I am sorry about the flex sig. I don't have sedation either except for colonoscopy.

At the risk of missing seeing it, are you on pred? I was on 30 mg just to keep the worst at bay as they tried Entyvio.

Do not get me wrong. I would be the first to say get the dang thing out if I felt like you.

A no messing about with pouches.

Hand old here.

My typing is terrible. Early here and no coffee.

I am 65. I have had this disease since my 20s. Any time you want to chat feel free. Feel free to pm. No stoma yet but support for sure.