Hernia pants on a Saturday night...

[wannabestressfree]

I need to moan. If anyone had told me ten years ago I would be laying on my bed on a Saturday night in massive hernia pants I would have laughed.....

I have Crohn's disease. After five unsuccessful resections of my diseased bowel I had it all removed and a stoma put in. It's not working (it's flat) so I leak all the time. At work, at night, I am a runny poo monster. I have suspected short bowel and 'dump' so nothing stays in. My bag needs emptying 10 times a day.

I am due to have a resiting and now I have a huge hernia behind my stoma. They think. Or a mass. I start the day just my normal, bumpy, look like I have been eaten by a shark self and gradually expand throughout the day. Until one half of my body looks pregnant. I have to eat white processed crap and marshmallows and I am over weight but am not allowed fruit, veg, brown food, etc as I go into poo overdrive.....,

I feel really miserable. I am a very bubbly positive person but am debating not going back to work until my surgery is done (am a teacher) as even sitting down on the toilet, or a chair, or doing other stuff is hard. And I am 35.

Sorry this is an indulgent moan.....

Not indulgent at all! Sorry, I can't give any advice as I know next-to-nothing about Crohn's disease, but just wanted to sympathise as it sounds awful for you .

When do you go back for more surgery?

That sounds just awful! You poor thing! I have coeliac disease and horrific IBS, go to loo 20 times+ a day sometimes, but nothing to what you are going through. Take it easy, maybe you should stay put until your next operation, going back to work & trying to deal with a difficult stoma is going to be hard for you.
Sending you hugs

Oh you are allowed to have a moan.

Being a bedtime poo m

Oh you are allowed to have a moan.

Being a bedtime poo monster must be just miserable and the self inflating tummy added to this.... Hope the operation happens very soon for you. And I think time off work is worth thinking about.

Oops I did a funny post thingy. Sorry

Hi Wannabe
Sounds like you have been through an awful lot with your multiple surgeries and I really feel for you having to cope with your condition. Is there any medication you can have to try to slow down the speed of transit in your intestine? Guess you have probably tried everything!
Your GP would surely sign you off work til your operation-I admire you even thinking of work while going through this.
Really hope the surgery improves things for you and hope you have good support and people you can talk too.

I wanna hold your hand. No advice, just support x

Thanks everyone. I have loperamide (Imodium) every two hours by prescription but I still go (I was on the loo 20-30 times a day pre stoma). I could have codeine as well but take tramodol for the pain.
I just feel a mess at the moment. Surgery is imminent eg September but I am worried I will never really get much better.....
Thanks for listening everyone

I forget to add the downside of my medication (loperamide) is when I take it for 2 weeks plus the 'poison' from my bowel comes out of my skin on my face eg severe eye problems, impetigo etc.
deep joy :(

Oh lovely it sounds hellish. You are fully entitled to have such a huge moan. In fact you sound in such good spirits for such a difficult thing so well done you! 5 ops, a stoma, drug difficulties, poo issues at work, bad skin, hernia pants on a sat night

What are you doing to treat yourself then?

Mmmmm not sure. Any suggestions gratefully received. I would like a proper break but should probably wait until I feel better.

The general issues at school (I am a teacher) don't bother me it's the leaking and expanding :) the passing of wind I can laugh off.

I feel a bit better today post whinge and after some sleep.

I said that already sorry for repeating....

Have you been tried on ocreotide(possibly spelt wrong) for the short bowel/gastric dumping? It's given by IM injection, but can work wonders in some people. How are you taking Imodium? The tablets work better than capsules with people who've lost vast chunks of bowel, or the syrup, and don't forget that the normal dosage for Imodium is for people with a fully functioning gut, those without can take way more, I know people who take 40 a day...

I'm supposed to be having my Stoma revised on Tuesday. It was redone during a hernia repair earlier this year but is rubbish, so he's redoing it, putting in an extra stitch this time that'll stay in for three months, hopefully that'll work.

I will ask about that thanks. I know I can take whatever I want re Imodium. It's the side effects that I struggle with. My body hates it in the long term.

I hope your op goes well. How has the hernia been? Was there a reason you had it? How is your stoma generally?