@nssg - It sounds like adhesions are the cause of your friend's symptoms. Adhesions are a nightmare complication, since in effect there's nothing which can be done about
them - having surgery and cutting through the adhesions tends to just create new adhesions afterwards. Your friend could have SIBO, if so, a course of antibiotics might help. It's a pretty lame suggestion, but I can't think of anything else to try :/
The downside of a universal healthcare system, at least in the UK, is that mental healthcare provision is considerably more limited and patchy than physical healthcare provision. Nobody wants to spend any money on mental health, so unless you can afford private therapy (and I can't), you are stuck with monthly visits to the GP and little else. All the lies told about
support are just that: lies. Try actually having a mental breakdown and accessing any of this support. I have to say, from what I can tell the situation has got much worse over the past few years. It wasn't wonderful 10 years ago, but it was definitely easier to get seen by a psychiatrist or a counsellor, even if it was only for a few visits. But now it seems almost impossible to see anybody. The place that I was at for mental health services has gone steadily downhill over the past five years, and now they are booting me off their books altogether. As you probably know, I was diagnosed with autism a few years ago and I attend an autism social group once a month. And it's not just me who's getting the terrible treatment/services. It's everyone who has the misfortune to be disabled, autistic, poor or unable to cope with life. This country is getting more like in America in its approach to despising the people at the bottom of society.
I'm sorry, you are right, I am depressed. The feeling that I am completely on my own (besides my parents and it's not always smooth sailing with them, particularly my dad) doesn't help. And yeah, I have tried antidepressants - several of them over the years. Long story short, I'm not a fan and I think at this stage - as depressed as I am - I'd rather remain clear-headed than go back to that groggy, numbed state. They don't even work very well, i.e. I still get breakthrough depression on them. What they definitely don't do is make me feel happy.
I think a high-fibre diet would cause more me even more pain. Tbh, I've never felt like food makes a lot of difference to me: whatever I eat it causes suffering in some way a few hours later. As for antibiotics, no, I've never tried those. Well, I have, but not since having surgery I mean. It is something I could ask my GI about
next time I see him. VSL#3 is too expensive for me. Steroid foam didn't work 2 years ago. And I wouldn't categorically rule out a faecal transplant enema, but dunno who to ask for that one <_<.
I originally had the same thought as you: that a small part of the colon would be easier to keep in remission than the whole colon, but it seems to be just as intractable as the entire colon was. The only difference is I'm not as systemically ill as I was before, i.e. I no longer get crazy fevers.
@ragbag - Yeah, people don't think of extra-intestinal symptoms when they think of Crohn's, but they can be an absolute bugbear. I've never had flashing lights but I used to get migraines which would begin as a dull ache behind one of my eyes, then progress to a throbbing agony if I left it too long. Ibuprofen would usually knock it on the head, but sometimes I would have to take it every day for a week until the pain finally disappeared. I still get those headaches but they're not as bad as they used to be: uveitis has become my main problem now. And I have Hashimoto's disease, another autoimmune disease. I had none of these problems before I got Crohn's. They might have happened anyway, but it seems strange that they came along when basically my Crohn's stop being mild and flared up heavily. The only thing that doesn't fit the pattern is skin sensitivity: that started after my first surgery and I think oxycodone was the trigger for that :-( It's 95% better than it first was, but can still be an issue, particularly at night.
Well I have written a positive essay. Sorry about
that, folks, but having written it all I'm now too tired to go back and try to make it shorter :-/
Dx Crohn's in June 2000. (Yay )
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)