Crohn's Disease

bluebell1 wrote: »

Hi I was diagnoised with colitis in April of this year, i then developed a rare complicaiton in July called pyoderma gangrenosum..... i would love to hear from anyone else who suffers from this because at the moment i feel like a bit of a freak show.... my consultant has only seen it twice in the past 10 yrs.thanks.

Thats tough- it is nasty. It does occur not infrequently in Crohn's disease but is very uncommon in Ulcerative Colitis. I had this happen about a year after I first had surgery for Crohns Disease. It was very painful, but eventually passed, it did however result in a lot of scarring tissue in my large intestine which led to further surgery again. Apparently its relatively unusual, and the necrosis normally happens externally rather than internally, most often on the legs.

I know it hurts like hell- hopefully your doctor has prescribed suitable pain meds.

S.

Hi Tanya- more than welcome to join in!

With Crohn's disease, you can appear to be just like any other normal person between flareups- and it can be very difficult for people to accept that you function perfectly adequately one day and be totally incapacitated the next.
Work can be very problematic- I always insist on having a desk closeby to the toilets, and even then do occasionally have accidents. When I first joined my current job and shortly afterwards suffered a relapse- I used my entire 22 days annual leave to cover that I was in hospital having surgery- as I was afraid I'd be fired as unfit for being ill.

Food can be interesting- you can be perfectly capable of eating something one day- and the next day the exact same food might cause inflamation and a blockage. Its very difficult trying to explain this if you're out for a meal with friends or clients- often you eat it anyway, knowing full well that you're going to regret it later.

If you're suffering from internal bleeding- along with the pain, you are a lot weaker than you would normally be. Simply standing at someone's desk, standing up at a concert, or driving a car- can be scarey. Normally you know a few seconds beforehand if you're going to collapse- but sometimes it can happen without much warning. You're reflex actions can be a lot slower- making driving dangerous- and even wearing a safety belt over your abdomen when in a lot of pain can be almost impossible.

Going to events, or travelling abroad- you can often be stopped because of the quantities of medication you have in your possession. Some badly trained private security staff can be very demeaning publicly going through your bag, and confiscating bottled water. Letters from doctors mean very little to some security staff.

In my own case- schooling suffered as I was unable to pay a lot of attention in class, and by the time I got home every evening I had to go to bed (at 4PM) for a few hours, before dragging myself to supper at 7PM and then back to sleep again. I could never get enough rest, I was constantly exhausted. Drinking milk was often as much as I could get down, and then mostly because it was a fluid more than anything else. After flareups calmed down- inevitably you would be seriously hungry- and would eat bizarre amounts of food- as a teenager my weight fluctuated between 5 1/2 and 12 stone. You would be emaciated one month and a couple of months later look like a panda- before you inevitably got sick again and might be unable to eat anything at all for weeks on end.

Thats just a small taste of what its like

I can't speak for what Crohn's patients in general would like- only for myself. Its difficult for people to understand how Crohn's can ruin your life- most people cannot imagine keeping spare underwear in their drawer in work and the terror and embarassment of someone, maybe your boss, wanting to ask you a question about something- and you know that need to run to the bathroom- immediately. People do not understand.

I hope I haven't been too graphic- there is far more in what I haven't said at all, than in the very small window I've given.

S.

Hi Suzieoc- saw your post over on irishhealth.com re availability on dps, decided to reply here instead.

Remicade was upgraded to a second-line Crohn's therapy by the EU in December 2006- following the positive opinion published by the European Medicines Agency (EMEA) in July '06. It is now widely available in most EU countries- but would normally only be dispensed for use as a second-line therapy for the treatment of severe, active Crohn’s disease in patients who have not responded despite a full and adequate course of therapy with a corticosteroid and/or an immunosuppressant, or who are intolerant to or have medical contraindications for such therapies. This followed the large French led GETAID (Groupe d’Etude Therapeutique des Affections Inflammatoires du Tube Digestif) studies.

It is normally only prescribed for Crohn's suffers by their gastroenterologist consultant, when he is satisfied that all other reasonable medications are unlikely to succeed.

I am personally aware of two Crohn's suffers here who are prescribed remicade as outpatient drips on the dps (I do not know what frequency they are on though- but I could ask).

It was briefly removed from the approved list (as were imuran, enteric coated prednisolone, codeine and lots of other very useful medications) for a 3 month period in the summer of 2007- as part of a government re-examination of the dps scheme, before being reintroduced after pressure from the ISCC and other organisations.

If you google Boards.ie and remicade- you will find a couple of people who are on it here at the moment (for conditions other than Crohn's though).

Best of good luck,

Shane

ahoney wrote: »

Hi, have been recently going to physio for back, its settling but ive pain in hip and thigh which doesnt seem to be referred from back. I was wondering if anyone can tell me if this could be linked with my Ulcerative Colitis? Thanks

It could be that you are not absorbing some vitamins/minerals that are beneficial for muscles/bones- but it would be a stretch to suggest that your UC is to blame. Crohn's differs from UC in this regard- as it is systemic, and does have known progressions which include arthritis- but this would be more unusual in UC. There are a few steps you can take- including very specific exercise regimes- along with a modified diet to try to increase beneficial oils/minerals/vitamins- but if you are incapable of absorbing them, a consultant may prescribe alternate therapy.

I would not automatically assume the UC is an underlying cause- I would explore the sypthoms in their own right.

Guys- UC and Crohn's are in actual fact two different conditions. If you want to discuss UC and dietary means of bringing it into remission (or indeed people's experiences on how to deal with it) I would rather that a seperate thread be opened and the discussion continued there.

While UC and Crohn's do tend to start in roughly the same areas (terminal ileum versus large intestine) and initially can have similar symptoms sometimes, you do have to keep in mind that Crohn's can occur literally anywhere in the gastro-intestinal tract, both internal and external, while UC is limited to the large intestine. As such UC is considered to be a curable condition (admittedly by surgical techniques), Crohn's on the other hand is not.

True.

What I had in mind though- was there have been a number of people referring to specific diets that they thought helpful (though some of them have been polar opposites of each other- such as the low fibre versus high fibre diets) which seem to be more a factor in UC than Crohn's. Perhaps it might be worthwhile to debate people's thoughts on this and other ideas?

S.