Can't remember if i introduced myself

Hi.

I can't remember if I introduced myself when I first joined.
I'm 49 - was diagnosed about three or four years ago (in complete denial about the diagnosis - didn't educate myself and ended up stopping taking medication)

After a year of denial, I ended up in the hospital for a couple of days (non stop vomiting green bile for about eight hours); and a few months later had resection surgery - they needed to take two feet of my small intestines and my appendix.

So far I feel great but live in constant fear of wearing a bag. I think I'm one of those freaks who has a really bad aggressive case of crohn's - and the stress is of the bag - the fear... is not making things better. But then again, I also have IBS - and my stools have been loose and gross since long before surgery - so maybe i'm not reflaring.

to top it off, I have a lot of difficulty speaking to my doctor about the diahrrea - i'm embarassed. He's a great doctor - it's me who struggles with trying to be open / blunt / candid.

since surgery I gained about 20 pounds and quit smoking. my self image sucks and I want a cigarette.

ugh - I have hemrhoids, my bum hurts from all the pooping, sometimes I bleed...I'm exhausted, and it's really hard -I have stage fright in public restrooms - so I try to 'go' before I leave the house... sometimes it really affects plans. been late for work a few times... thank god for immodium.

I don't know where to go for a help group - because shit - if i can't talk to my doctor in private - how the hell could i open up in front of a group?

there's a part of me that thinks that if i just tried harder to psyche myself up that i felt better - i could ... feel and be better.

Hi and welcome. Have you considered writing down what you can't talk to the doctor about?

For most of us with crohns ending up with a bag might be a reality, I am approaching that point at the moment. It might not be in your case, but you need the crohns to be under control. I used to smoke but transitioned to an e-cigarette before my last op. It might be worth considering? I have had it 30 years, and have been talking bowel motions for all of them, I am beyond embarrassment. All it is is undigested food, what goes in has to come out. Are you taking any meds at the moment to keep you in remission?

pentasa - 4000 mg a day. acidophilus.
i am having a follow up colonoscopy on weds - to see if i'm in remission
wish i knew what a flare up is - is a flare up when you end up in the hospital? so confusing for me - because i have ibs too. so i have no idea if my trips to the bathroom are a result of ibs or if i'm beginning hell again.

I always wonder about a diagnosis of IBS when you have IBD. I also have been told I have IBS. A flare up is when symptons including pain and urgency are noticed. It can vary in severity, so is difficult sometimes to work out if you are in a flare or out. I very rarely end up in hospital, I tend to self manage if I think I am flaring. I am also on Pentsa which I take with Aziathropine which most of the time keep me in remission. The colonoscopy will show any area of inflammation. It is a difficult illness to live with.

Current Medications

Amitriptyline
Pentsa
Aziathropine
B12
Folic acid
Selenium
Multivitamins
Codeine phosphate
Tramadol
Oramorph

Current diagnosis: 3 small strictures, no inflammation according to CT

Waiting for a flexible sigmoidoscopy and cystoscopy

Planning a proctocolectomy and permanent ileostomy

Is it possible to communicate some of your issues to your GI via email, if that helps with the embarrassment at all? I know I find things much easier to communicate in text, since that way it isn't face-to-face.

I understand your fear of wearing a bag, since that's one of my fears, too. Really, as long as you take your medication and take care of yourself and get out of flares as soon as possible, you should be fine.

For the smoking: maybe you could use e-cigarettes, or use a vaporizer for the tobacco instead?

and... crohn's recurrence. not happy.

it's not too bad - but it's back.

At least you know what the problem is and can hopefully get it back under control. I sympathise about public toilets, I have to get up two hours before I leave the house in order to avoid them

mamagus said:

and... crohn's recurrence. not happy.

it's not too bad - but it's back.

Click to expand...

I'm sorry to hear you're in flare again...

And unfortunately, that means you need to contact your GI. You should ask for prednisone, even just a short course of it. And it might be a good idea to go on an immunosuppressant, like Imuran, 6mp, or Methotrexate, since it looks like the Pentasa isn't enough.

he's putting me on aziathropine

mamagus said:

he's putting me on aziathropine

Click to expand...

I have been on Azathioprine for four years and it got me into remission with no side effects bar thinning hair. Fingers crossed it works for you.

That's good! Just know that it takes about three months for it to get to a therapeutic level, which is why it's usually accompanied by a short course of prednisone to help get you into remission.