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Intro

Evening all.

It's odd that I'm just now coming round to the whole Crohns forum community thing as it's something I've been meaning to do for the 3 years IBD has dominated my life. I've always been unfashionably late.

I'm gonna rattle off my story in bullet points, in order (I think) to save me waffling. I'm a 25 y/o male from England btw.

- Diagnosed with left sided colitis in 2013.
- Took Salofalk and Prednisone enemas for a few months as oral tablets went straight through me.
- Winter of that year started passing bloody diarrhoea upwards of 10 times a day.
- Had emergency Infliximab infusion which dulled it for a week.
- Started passing blood upwards of 16 times a day.
- Was in hospital over Christmas and New Year until I conceded that emergency surgery was necessary.
- Had a subtotal colectomy and a bag fitted in early 2014.
- Went home and looked forward to a recovery but soon had no appetite and what little I could I eat would often be thrown back up.
- Was admitted again as I started collapsing due to extremely low salt levels.
- Had several spells in hospital where I was delirious but not aware of it at the time (I only remembered the manic things I said and did later). They suspected them to be Adisonal crises but it turned out it was just my levels being heinous.
- Was somehow released from hospital sans any kind of diagnosis for why I was in such a poor state (how they thought I'd manage without at least the constant saline drip is still beyond me).
- At home the collapsing and crazy spells continued so was readmitted and spent the summer in hospital.
- Got steadily worse and gained 4st of swelling due to low protein as the doctors still couldn't pin a diagnosis on me and told my mom to expect the worst.
- Was transferred to HDU where they fitted me with a Hickman line and started feeding me TPN which genuinely saved my life.
- Over the next couple months I got better, peed all my swelling out and learned to walk again.
- After numerous tests the one that sealed the diagnosis was an oral camera tablet which showed I had Crohns and Colitis of the small bowel.
- Was put on 8-weekly Infliximab and azathioprine, stopped the TPN and went home with a world class appetite.
- Came back in for my next infusion which sparked an allergic reaction so that was the end of that.
- I forget what they tried next but suffice to say it didn't work and I was gradually getting worse again i.e. appetite and mobility.
- Was readmitted and had a short spell of TPN which rejuvenated my appetite.
- Went home for Christmas on weekly Humira injections.
- Mid-2015 I had started to get worse again and they decided the Humira wasn't working so after another spell in hospital they switched to weekly Methotrexate injections.
- Late 2015 after tests they decided the Methotrexate wasn't doing enough on its own for they twinned it with 8-weekly Vedoluzimab infusions and that's what I've been having to this day.

Right now my status is I look normal, if a little ill and skinny in the limbs. To people I knew pre-illness I must look horrendous as I used to be a stocky man, overweight for most of my life. I can just about get about but my energy levels leave a lot to be desired and a mile walk is all I can manage right now, on a very good day. My appetite is so-so but I can't eat anything if it isn't carb due to very narrow areas of my small bowel. If I risk meat, fruit or veg then I pay for it with 3 days of excruciating pain. My thoughts entertain the possibility of having sections of the bowel removed so I can return to being an absolute carnivore as my diet is so tedious, unhealthy and unmeal-like, but I'd also rather not go back into surgery unless absolutely necessary. I believe TPN would put me back on tip-top form but the government probably figured they've spent enough money on me.

But right now I'm not really looking for advice on that score, short of a few recipes for a guy whose food options are extremely limited. I'm moreso here because until this very moment I've failed to surround myself with anyone who can remotely relate to what I've been through, and mentally it's done me no good as I only ever show a brave face making parody of my scenario to my mates, when really I often feel utterly deflated by it all.

OK, I kinda waffled. That's me I guess. I hope I can keep this up as making some IBD buddies is long overdue. :thumright:
 
Welcome. You have come to a great support group. I am sorry for all you have been through. Feel free to come here with questions or to vent or to share.
 

scottsma

Well-known member
Location
Tynemouth,
Welcome turin,well you've certainly been through the mill haven't you ?
You're post will certainly be of help to those who are wondering if they can share their experiences with others.I'm glad you found us at last,but sorry you had to.We're a very supportive forum,and friendly and sympathetic.Nothing is taboo and you can have a good old moan and give vent whenever you feel like it.We don't judge and sometime laugh at ourselves.Have a look around and familiarise yourself with the various threadsI hope today's a GOOD day.
 
Cheers guys.

Yeah, it hasn't been easy. The doctors felt my scenario and the speed it all came on was pretty rare, to the point that I had several ask if they could write a paper on my case in hopes that I had something exotic they could get published in a medical journal. But alas, Crohns.

I'll have a browse and see if I can contribute to any threads.
 
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