To be panicking about this?

[Bucketfullofstars]

I have 2 conditions.
Ulcerative colitis diagnosed at 33.
Rheumatoid arthritis diagnosed during lockdown at 35.

Both fairly well controlled although I didn't think that by age 38 I would have two serious conditions. But such is life.
When I was first diagnosed with UC, I panicked massively about being told I would need a stoma. I had on colonoscopy, full intestinal inflammation also the highest stool inflammation reading the doctor had ever seen in his career so far. Over three thousand on a calprotectin score.

However, Luckily, so far I have been OK. I take my medication religiously and try and stick well to my diet. But nobody really understands what it is like and how even though my diseases are controlled to the most extent, it is still very hard to live with.
Anyway, the fear about needing a stoma came back to me today after reading about a celebrity who has just had one and a friend of mine on an online support forum suddenly saying out of the blue that she will probably need a bag soon. She is older than me at 58 but always said she was managing well with medication and has been eating and drinking just fine. Yet despite this, has been told she is running out of medication options.
Not sure why I am posting, just feeling anxious and alone. 😞

I can't help directly as I don't know enough, but a family member has UC and controls it really well with the SCD diet. It's pretty hard core and hard work, but she studied and manages it with a tough job with long hours - well she fall off the wagon, flares up, then goes back on it. She's early 40's and no mention of stoma. I also have a friend with Crohn's and she's on regular infusions, is in her 50's and no mention of a bag if that's at all helpful.

My grandfather is 80 with ulcerative colitis & fingers crossed he has never needed a stoma (& hopefully never does!)
He also has an additional autoimmune condition Sarcoidosis, so similar to you with multiple issues.

So its certainly not a foregone conclusion, although can understand why you worry

Have you looked into what having a bag would entail? We all deal with things differently, but I am very much a prepare for the worst sort of person. In your shoes I'd assume it's happening and get myself into that mindset and work out exactly how I would handle it. If it happens, you will handle it. You have built this up in your head as a really terrible thing, but it would eventually become a normal part of life. Maybe talking to people who already have bags would help.

I don't have experience of a stoma, but many years ago I was facing the prospect of becoming a wheelchair user and got very frustrated with my husband who was very much in denial and trying to convince me it wouldn't happen. It did happen, though I don't need it in the house, but I can't really get out and about without it. Life has carried on (for another sixteen years so far), and being a wheelchair user is my normal now. Yes it was a horrible prospect at the time, but life is good and I don't really think about it that much in my day to day life.

We're all different but I found people trying to comfort me by saying it wouldn't happen was just belittling my fears because it was clear that there was a very good chance it would happen. I'd much rather have a plan for what if it does happen. It may not be the right approach for you, but it definitely was for me.

Hi. I don’t have the conditions you do, but have recently been diagnosed with kidney failure and told that dialysis is unlikely to work for me long term due to other health issues. It’s an awful shock, and hard to come to terms with. But I have found comfort and good sense on threads on here. You can cope with whatever comes, and you should try and find peace in that. It’s a wonderful life, and you and I are privileged to have access to such wonderful health care, even nowadays. You can still enjoy life with a stoma. I wish you well. Good luck.

I feel the same. I was hospitalised for 3 months years ago. Very limited diet.

Eating out is a nightmare because I don’t have an allergy. Because I am slim the staff assume I am on a diet and judge.

I was on azathyoprine for years, max dose of Mezalazine and steroid suppositories when needed. If I started with a flare it was 40 mg of oral steroids for weeks. I am on biologics now. I used to have long thick curly hair, now it’s thin and getting thinner. Even without a flare I am always ill.

That celebrity story scared me to, because everything I do is to avoid the bag 😢

I really couldn’t research stomas to be honest. Not strong enough for that and think it would panic me even more. Especially as there are a lot of horror stories out there.
I haven’t been told by the doctor that I will need a bag or that there is a possibility of one by the way. It’s just hearing about that celebrity and my friend online. Just really freaked me out.

Maybe not finding clinical info but following some positive women who have a Stoma?

This is my friend Sam and she's amazing Ostomy Blogger - So Bad Ass - Sam Cleasby and there are others. Might help see life is still possible and it's manageable. I do feel for you it's a scary thought and it would upset me - but if it kept me alive I'd do it.

15 years since my diagnosis and the fear comes and goes but mostly I feel grateful I've been mostly well and medication largely controls it. A handful of flares and the grind of daily medication, colonoscopies and weird symptoms but others have life worse. People I know of with a stoma say it's life changing (jn a good way) as by that point they were so poorly and it gave them their life back. I know that maybe my time will come and I'll need surgery but most days I don't think of it at all. Hugs to you.

Thanks. I just can't go there at the moment. Makes me feel incredibly anxious.

As I said, no doctor has suggested this to me at all but seeing today's news gave me a bit of a fright and seemed very close to home. I know this particular celebrity refused medication at first, only taking suppositories but it still could have happened to her regardless. Just a bit of a shock.