Crohn's Disease

shayser · 10-09-2007 7:50pm

The specific carbohydrate diet worked well for me, too. I would recommend sufferers have a read of the book. It's short and there's nothing to lose but the few hours it takes to read.

Must be 5 years now since I've had a flare-up.

Pepe LeFrits · 12-09-2007 2:01pm

Wow, only just discovered this forum.

I've Crohn's too. I was diagnosed when I was 9 years old and have been going to see Dr O'D ever since (I agree with the consensus here; he is brilliant). I was pretty sick when I was young and spent a lot of time in and out of hospital, and I was on Fortisip supplements for years, as well as cortisone and immuran. I was tiny and pretty unhealthy until about 17, since then I've gone from strength to strength.

I went for my first check-up in over 5 years recently and the disease is only slightly active, so I'm on pentasa now, but to be honest, aside from a few mild stomach/bowel complaints occasionally I haven't felt effected by the disease in years. I can eat pretty much anything I want; I'm on a self-induced weight-gain/strength-training program at the moment.

rcs · 12-09-2007 2:40pm

smccarrick wrote:

You know I think that we should start some sort of a petition to get Crohn's medications included on the longterm illness scheme- the 85 a month is expensive, especially when you don't have much in the way of a disposable income.......

Around the time of the elections I put this to Mary Coughlan TD and she said she would take it up with Mary Harney. I have since gotten a letter back from Mary Harney's Office saying that the list of illnesses that qualify for the long term illness scheme is not & will not be reviewed at the present time. It went on to mention that you could claim it back at the end of the year using the Med1 forms. This is just not good enough.

I find it ridiculous that someone with Diabetes qualifies for this (which is quite right as they will require medication for life) & someone with Crohn's doesn't (even though they will also require medication for life & the disease will never go away).

I will have a look around for the letter and post it here when I find it. I wonder is there anyone we can contact who can get the ball rolling on this, because €85 per month can be crippling for some.

watsgone · 10-10-2007 2:45pm

Hi all,
Just thought I would add the thread. I have suffered (being the only right word to describe it) with crohns for about the last 3 and half years. I was diagnoised two years ago.
I have been having a pretty rough time of it of late, mostly due to stress I think. I have just finished up at college and I am looking for employment.

I am sure I will sort all that out, but it didnt help yesterday getting a call telling me I might not get my medical card renewed.
The person wasnt very helpful at all.

I really can't understand why this disease is treated with such disregard.
Would some sort of online petition help?
Any ideas

funsize · 18-10-2007 10:38am

Hi all,

Long term Crohn's sufferer. Had a recent flare-up which was controlled with good old Prednisolone, though it seemed to take longer than usual to get the inflammation down this time, so my consultant (Jack Hollingsworth) brought me into the Bons Secours for some tests.

Thankfully, he tells me that I've turned a corner and things are settling down again. Pain is mostly gone and I'm eating like a demon.

Still on a reducing dose of the Prednisolone - I take the Deltacortril coated type which I find easier on the stomach and causes less of the "facial swelling", though it gives me a serious appetite - can't stay out of the fridge!!

Doc has started me on Imuran, initially a low dose of 50mg per day which might go up when my blood tests come back.

From reading the posts above, I know a few of you have taken Imuran before, or are still on it. I know it takes a long time to kick in - about six months? My question is - what kinds of side effects have you noticed, how long did it take before the side-effects became noticeable and did they go away quickly if/when you came off the Imuran?

Hope you're all feeling better - I'll let you know how I get on with the Imuran.

FS

The_Conductor · 18-10-2007 11:06am

Hi Funsize- I've been on Imuran for about 2 years. I have occasional very low white cell counts (I get an FBC done every 6 weeks) after which my Imuran is reduced by half until such time as the FBC goes back to normal.

Since I started the Imuran I have had a few flareups- but they have been a lot less severe than previously (i.e. they have not necessitated surgery- which I had had 4 times in the past).

Long term use of prednisolone has reduced my bone density and of course all us Crohn's sufferers are very susceptible to arthritis, even at very young ages. My own speciality is tearing the tendons in my ankles (which I've done 5 or 6 times in the last 2 years- last time I was almost certain I had broken it).

Side effects of Imuran vary from person to person- I read up online about hair loss, and a whole load of other things and was half terrified about it. These things didn't happen for me though, thankfully.

What I am quite worried about is the pharmacies no longer dispensing things on the E85 a month scheme from the end of the month- my Imuran will be over 450 a month, and you can only claim back an excess from the HSE on a quarterly basis- so its going to be very very pricey

When you factor in other medications- almost a third of my after tax income will be accounted for. :mad:

Do let us know how you get on with your Imuran- its good to compare notes.

Best wishes,

Shane

rcs · 18-10-2007 11:58am

Hi funsize,

I've been on Imuran for a few years now. My last flare up was 2002. After that I was put on Imuran 75mg & prednisolone 5mg. Have been on that ever since. I got a my large & small bowels examined in July & thankfully the disease seems to be in remission for the time being.

My doctor has now upped my Imuran to 150mg to keep the crohn's under control & has started to wean me off the prednisolone (4mg for 3months, 3mg for 3months etc., until I'm off it).

Thankfully I haven't noticed any side effects from Imuran & it has been fairly effective for me but I've been on it so long at this stage I probably wouldn't know if I was experiencing any side effects

I also have a massive appetite, could eat all day long if I don't stop myself!! Think that could be the steroids tho! Everyone on steroids should take a calcium supplement, I take Ideos. As mentioned above, long term usage can affect bone density. I take an iron supplement aswell, my iron levels can get very low otherwise, leaving me very tired & lethargic. But when I take a regular supply I feel fine.

As Shane said, the main problem I have is with joint pain (secondary arthritis attributed to the Crohn's), can be very irritating at times!

Hope everything works out well for you!

smccarrick wrote: »

What I am quite worried about is the pharmacies no longer dispensing things on the E85 a month scheme from the end of the month- my Imuran will be over 450 a month, and you can only claim back an excess from the HSE on a quarterly basis- so its going to be very very pricey When you factor in other medications- almost a third of my after tax income will be accounted for. :mad:
Shane

Shane,

Did your pharmacist tell you this? Is this due to the current dispute with the Government. If so i'm screwed!

blah · 18-10-2007 12:14pm

Hey everyone,
Sorry to hear about the flare ups people are experiencing at the moment, I've been through it myself, bowel pain (to paraphrase Homer Simpson, "You know that feeling you get when a thousand knives of fire are stabbing you in the bowel?"), back pain, hip pain and shooting pains down my legs, taking prednisilone (kept me awake all night), more prednisilone(couldn't stay awake at all, wtf

) immuran, intravenous drugs that i can't even remember the name of, surgery, surgery, surgery, drinking contrast (it's funny, I can drink 10 pints of beer no problem, but give me a couple of bottles of contrast and I'm labouring with them). Finally had my terminal ileum removed in 2004, and I've been better since then. Back pain is gone too.

So if you're suffering a flare up (particularly the first bad one), you should know that it can be sorted and you can be in good shape afterwards. At the moment I've moved over to England (for a change of scenery), I'm swimming, running and playing 5 a side footie (I used to have such little energy that I had trouble climbing the stairs) and I'm eating all the mushrooms, spinach, porridge I want! So if you're suffering now, get all the help you need, and don't worry about College/Work, and don't stress.

I'm going to my consultant (Patchett in Beaumont) tomorrow, and the only thing I'm worried about is the €130 I'll be paying him to tell him I feel fine

. Fingers crossed for the future!

ahoney · 28-10-2007 11:53pm

Hiya, this is my first msg board post and i'm so glad i found this thread! Was diagnosied with Ulcerative colitis last week and while the consultant and gp have been great I got so much info, tips and things to avoid from reading all ur posts. I'm presently on 30g of deltacortril for 2 weeks then reducing to 10g for a month as well as 3 asacolon tabs a day. Not sure what the future holds re UC, i guess its a wait and see thing re regularity and severity. Until i read ur posts I thought the stress of the diagnosis was causing the headaches, now i know its the meds, if anyone has any advice of any sort dietary, meds or general I'd really appreciate it
Thanks ahoney:)

ahoney · 30-10-2007 1:15am

just reread my post, u'd know i was a newbie to the meds, that should read 30mgs!!! not grammes! those would be some seriously side effects !
ahoney:)

Handrick · 01-11-2007 1:28pm

Hey all,

hope you all had a good Halloween..

just thought I would update you with regard my situation.

I am now completely off medication due to the Specific Carbohydrate Diet I have been on for the past 2 months or so... I did have a little flare up due to getting a cold which everyone seemed to get..but it did not last long...

I am not saying I am completely healed by any means but I am definitely on the way and my life is very much getting back to normal..

Of course doctors will just tell me its in remission but I know my body better than they do... and the fact that they wanted to keep me on Pentasa for 2-3 years says it all...

best of luck to you all whichever route you take but I would say check out the alternatives to medication..

take care
Andrew

bluebell1 · 02-11-2007 1:28pm

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.

The_Conductor · 02-11-2007 1:38pm

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.

Tanya4321 · 05-11-2007 6:07pm

Hi Everyone, I hope it is okay that I am joining your conversation. I think this is a really good forum and I have appreciated what you all have been sharing. I really was in particular touched by what Smaccarrick's wrote:
"Crohn's sufferers do tend to be misdiagnosed for a lot longer than other patients, given the wrong treatments even when correctly diagnosed, have trouble with work and social commitments, generally get put through the mill and have to fend for ourselves a lot more than most. " I work for a communications firm, and our client is involved in Crohn's research and awareness. I've been trying to pass along to them what I feel Crohn's patients want most and what they need. So I have been reading the forums and attempting to gain perspective. But I really feel your opinions are more valid than mine. Is there anything you would want me to share with them?
Best Regards,
Tanya

The_Conductor · 05-11-2007 8:51pm

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.

Tanya4321 · 07-11-2007 4:19pm

Thank you very much for all of your wonderful insight. I am trying to learn as much as I can about Crohn's Disease and I really appreciate everyone's oppenness and willingness to share their stories and their opinions.
>Tanya

funsize · 08-11-2007 11:23am

Tanya4321 wrote: »

I've been trying to pass along to them what I feel Crohn's patients want most and what they need.

Hi Tanya,

Of course I can only speak for myself, but what I believe Crohn's patients want is:

- Faster diagnosis. I personally suffered for two years before being diagnosed with Crohn's, and I hear a lot of similar stories. My brother had his appendix removed unnecessarily, even though he told the doctors that there was Crohn's in the family, they still took another year to diagnose him.

- Better informed GPs. Most GPs I've been to either openly admit they know nothing about Crohn's or give bad advice. They also confuse Crohn's with Irritable Bowel Syndrome and Colitis. Similar symptoms, but different conditions. Thankfully, there are a few very good Crohn's specialists in Ireland, otherwise we'd be in a lot of trouble.

- More information. It's hard to believe, but there isn't much real information on Crohn's (in laymans terms) on the web. I also find it hard to get any real advice from health care professionals. For example, I have been a Crohn's patient for 20 years and only recently learned that NSAIDs can worsen the condition.

- Long Term Illness. Crohn's is a life-long condition, often necessitating expensive treatments. It has already been discussed in this thread, but is worth mentioning again - Crohn's should be listed on the long term illness scheme.

- Understanding. As Shane said earlier, it is hard to explain to family, friends, work/school how you can be perfectly normal one week, and incapacitated the next. I often hear comments like "no wonder you're sick - you were on the beer last week, no sympathy from me" and "why are you eating chips, I thought you weren't well?" or my favourite "how come you're so fat? You were a skinny little thing a few months ago".
Fortunately for me, I work for a very understanding company and can work from home on days when I am feeling unwell, and don't have to use up my annual leave in hospitals and waiting rooms.
How can this understanding be created, though? Would an awareness campaign help? Or a booklet designed for family members to help them understand?

- Cure. Ultimately, of course, we want a cure, or a guaranteed preventative measure that does not have nasty side effects. I try to stay informed about research into potential cures, but I'm not from a scientific background so find a lot of it hard to follow, so I don't have a realistic view of how likely a cure is in our lifetimes. I think this feeds back to my point above about more information.

Best of luck to you and your client with the Crohn's research and awareness. Please ask any questions if you want more detail on anything I've said.

FS

Delver · 30-11-2007 2:36am

Hi everyone,
I'm glad I found this thread, its great being able to read about what so many of you have been through, and know that there's other people out there with the same problems as me!
I live in wexford, and so far I've only ever met one other person who i knew had crohns disease, so I havent realy been able to talk to anyone who can understand waht I've been through.

Sorry about my story, its kinda disgusting in a way, so be warned!

I was diagnosed about 3 years ago at the age of 21, luckily it was a fairly quick diagnosis. I had terrible stomach cramps and bloody stools, etc, the usual stuff. So i was given a course of steroids and then put on pentasa. This worked for about 2 years, with mild relapses, but nothing serious. But then i had a terrible relapse about a year ago. I got through it ok, heavy steroid usage and so on, but i thought i'd be fine. But then i started to develop a pain in my backside. For about 2 weeks I thought it was bone pain or a pulled muscle or something, but when i went to my GP he had me sent straight into hospital. Turns out I developed a large abscess in my back passage due to my crohns. It was one of the worst things i'd ever been through. I couldnt sit down at all, barely walk, and i had to keep getting it drained. Eventually it broke through from my back passage to the surface of my backside and became a fistula. Nothing the doctors could do would get it to heal. This led to other abscesses tracking off the main one, i currently have 4 fistulas around my back passge. They all excrete liquid as well so i've to constantly wear wound pads, which is a terrible nuisance. I've had 5 surgeries to try to heal them. I've been bed ridden for the last year, not able to walk or go outside or anyhting. Its been a tough time to say the least. Going to the bathroom in particular was excrutiating somtimes, almost passing out from the pain! Then during the last year, to top it all off, i got a complete stricture in my terminal ileum, so i had to get the surgery to have that removed, so that was another less than ideal time for me!
Luckily enough its all quietened down for the time being. The fistulas are not sore any more, so i can finally go out and about again! Also i was referred to Dr. O Donoghue in Vincents about 2 weeks ago so he's just started me on Imuran to see if that helps the fistulas heal! I know it sounds terrible, but i'd take the stomach pains over the fistulas any day, thats how painful they were!
Hopefully i can get my life back on track now, its about time i got a break!
Thanks for listeneing, sorry about the length of my post, its been good reading about others out there who understand some of what I've been through.

jazzieb · 05-12-2007 6:10pm

Having one of those "where have you been all my life" moments? I was reading the Katy French thread and someone mentioned this board .. I was diagnosed at 21 and had 15 ****ty years - literally - before I finally had an emergency ileostomy/ total coloectomy 2 years ago .. Have never been better .. no sign of Crohn's at all any more.

I've been to a few ISCC meetings over the years but would love to know if there's an ileostomy support group .. there's a very active one in the UK. Anyone else here got a bag? I was so excited to see a Crohn's thread at the top, I never even looked for an ileostomy thread .. sorry

Jazzie

tbh · 05-12-2007 7:31pm

at least some good came out of it

welcome, jazzie, hope to see more of ya here.

jazzieb · 06-12-2007 1:36pm

Thanks TBH .. to be honest when I saw your sig first, I thought it was some kind of joke

It wasn't until I saw the chatter about traffic on the board that the penny dropped. Can't believe I never thought of searching for Crohn's on boards before - doh!

Jazzie

suzieoc · 15-01-2008 9:44pm

Hi everyone, I have crohns (4+ yrs now) and have been on infliximab (aka Remicade) for the last 2yrs (after small bowel resection surgery). I get 600mg every 7-8 weeks and it's working great (its a long story but i tried & reacted to everything else (pentasa,imuran ++). I'm in the USA though (for over 10 yrs) and now want to return to Ireland. So my questions are:

1) Does anyone here get this infusion more often than every 3 to 6 months? Over here the doctors are worried that your body can reject it if its not given regularly (ie not more than 8 weeks)...
2) If i'm not on VHI how do i pay for it (they have a 5 YR pre-existing condition wait). Is this covered by the drug payment scheme or some other public health service? The bills over here are huge (something like $8,000 /dose) but that is covered by my insurance here.

Any help is greatly appreciated!!
Thanks!!
- suzieoc
PS: I also posted on the ...Medicine/Crohns before i found this one (which has more recent posts) so sorry if your reading this post twice!!

The_Conductor · 15-01-2008 10:24pm

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

suzieoc · 15-01-2008 11:17pm

Thanks so much Shane! That's great information!! I will do some research on the drug payment scheme and make sure i can sign up for it once we move back (or before even). Having that huge bill covered will be a huge relief!

When I was on a lighter dosage of remicade i used to get worse crohns symtoms (incl. 'migratory arthritis') after the 5th or 6th week but since a the higher dosage @ 8 weeks life has been great ...

Let me know if you find out if the crohns sufferers you know get the out-patient drip/IV done every 8 weeks ?? I'd like to get more info on the risk of going longer without it and the chance or rejection... 'cos if that happens i'm out of options... which would be scary!!!

Thanks again.
- suzieoc

watsgone · 19-01-2008 2:11pm

Hi,

I am currently on the inflixamab excuse the spelling.

I find it great, I am very tired after it though, I was on an other treatment along with it for a while though I am good enuogh to come off.
I am hoping a few months more and I can stop the treatment fully.

Hope this helps

ahoney · 20-01-2008 12:32am

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

The_Conductor · 20-01-2008 11:31am

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.

Fajitas! · 28-01-2008 7:29pm

Leg pains can be a very early symtom of UC.

I've been pretty much in control of it all now, and back on a normal diet, just not going near peppers, espec. chilli, and coffee can really get me. Stress is my main factor though, as it is with most people.

It seems the Pentasa foam has finally been brought into Ireland, under the 85 quid a week scheme, which is great, but I won't be needing it unless I've a serious relapse. If any of you are running into problems, I'd recommend you ask your Doc about it. Mine puts it very highly...

Fajitas! · 28-01-2008 7:33pm

ahoney wrote: »

, if anyone has any advice of any sort dietary, meds or general I'd really appreciate it
Thanks ahoney:)

When I was diagnosed, I was put on a meat, fish, rice and pasta diet for a few months. Within a week most symtoms had stopped.

GuanYin · 28-01-2008 9:07pm

Its not a cure. A large part of Crohn's is bacterial influence and your immune systems reaction to that influence. When you change your diet, the bacterial population in your GI can change, which in turn may change/modulate the immune response in the gut. Its a very, very short term measure though.

Fajitas! · 28-01-2008 9:26pm

Er... The diet change, or Pentasa foam?

I wasn't saying either of the above is a cure, moreso a way of bringing UC into remission.

GuanYin · 28-01-2008 9:45pm

Diet. It doesn't bring about remission for CD or UC per se either.

I didn't read all the way up, apologies for lack of clarity.

The_Conductor · 28-01-2008 9:48pm

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.

GuanYin · 28-01-2008 9:54pm

smccarrick wrote: »

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.

Erm... where did I suggest otherwise?

You left out that CD is transmural, which makes it much more distinct than the mucosal UC. As for CD, it's likely actually several distinct conditions that we've classified as one. We originally called it regional ileitis, but that was changed when it was described in other parts of the GI tract.

The_Conductor · 28-01-2008 10:08pm

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.

GuanYin · 28-01-2008 10:12pm

smccarrick wrote: »

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.

Well I wouldn't suggest diets as anything other than disease management. As Is aid, it *both* conditions, any effect is most likely due to abrupt and significant diet change altering the GI flora. This is why it is less/more effective for some people (depending on their previous diets).

We often suggest diet changes based on what a person already eats, but messing around with your diet, if it is already balanced, is dangerous stuff.

For the record, I work in an IBD center.

Featherl · 06-02-2008 6:28pm

My mam has Crohns and is always very sick with it. Had it since teenager. In hospital regulary and has had several operations

nerdysal · 06-03-2008 8:16pm

I have crohns disease and I was just wondering if there is any other sufferers out there (or anyone for that matter!) who has any suggestions for recipes or even just really good protein rich foods?

Aquitaine · 07-03-2008 12:19pm

Well there is no particular diet you should follow although you might find certain foods tend to irrate it. keep an eye on alcohol and milk intake. everthing else in moderation such as sweet and spicy foods - again you might find that some of these things spark a bout of pain, if so cut out of your diet. and no smoking!

Faith · 07-03-2008 12:35pm

I'm going to move this to Long Term Illness. I think you'll get better advice there.

tbh · 07-03-2008 1:14pm

threads merged. Thanks Faith.

nerdysal · 08-03-2008 10:07am

Hey Everyone

I suffer from Crohn's disease too. It's time for my sob story!!! I was diagnosed in August 2005 when I was 15. It was triggered off by how stressed I got doing the Junior Cert. Anyway, I had all the usual tests and examinations and then my doc (the wonderful Prof O' Donoghue) decided to put me on Pentasa and Steroids.

Unfortunetly in September 2005, I started getting this awful pain in my back and my upper left abdomen. I had a high temperature aswell. On the 19th of September (never forget that day for as long as I live) I was in a lot of pain and then I got sick and the pain trebled in its intensity. I was screaming and screaming with the pain. Mam and Dad bundled me into the car and drove to A & E. I was taken in immediately. The doctors were extremely worried. I had to be overdosed with morphine I was screaming that much. Turned out I had steroid induced pancreatitis. I was the youngest person to ever get it and the only person to get it from steroids! Apparently, I could have died...

After that, I was taken off the steroids (can never go on them again- but that's a blessing in disguise to be honest) but left on the pentasa. I think that was the most miserable period of my life. I was 6 and 1/2 stone and I looked like a skeleton. My Iron was down, my protein was down and I was in so much pain. I didn't go back to the hospital until May 06. This time Prof decided to try Infliximab. This stuff was great! I had about 4 infusions and after each one I felt fab but then they only lasted for 4 weeks and you could only get them every 8weeks.

So then in October 2006, I started with Humira. The self administered injection. This was the second most scariest thing I had to do!!! I dreaded the thoughts of it. I thought it was working ok. But my iron never came up and neither did my protein and my weight never got above 7 and 1/2 stone. So to help with all those things, in July 2007 I went on a tube feed. This gave me a really great boost. My weight got up to 8 and 1/2 stone, my Iron went up a little and my protein got up to 26.

But sadly my tale of woe doesn't end there. In November 2007, I was getting awful pains in my lower right abdomen (so bad they were running down into my leg) and my GP told me to go back to A & E. There I was told that they had tried everything. Their only other option was surgery. So I was put in the capable hands of Mr Hyland. They removed 12 inches of my ileum and a tiny bit of my colon (only like an inch or something).

Due to the operation I missed two months of 6th year. Yes, I'm doing my Leaving Cert this year. Not the best thing for the ould Crohn's. but the funny thing is after the operation, I have learnt to relax and have realised my health is more important. I got 420 in my mocks (didn't panic once) and I only need 300.

There are still things I can't eat (and really miss) like popcorn and baked beans! I have been able to eat weetabix since the operation and I had onion rings since and they didn't affect me either

I'm currently taking Imuran. The Prof was apprehensive about prescribing them because there is a small risk of pancreatitis with them. but I have been on them for 3 months now and there hasn't been a peep out of that stupid pancreas!!!

It's nice to have this thread to talk about stuff

Sal

PS: There's a great website for teenagers suffering with UC and crohns. It's an american website www.ucandcrohns.org

The_Conductor · 08-03-2008 10:59am

Sal- you really had it rough. Well done re your mocks- you're an inspiration to some of the others of us. Taking an extra year to do leaving cert as you have discovered is not the end of the world- the very best of wishes in June. It does always tend to get stressful around exam times- so make sure you don't over do things. The very best of good luck to you, Shane.

Sabre0001 · 08-03-2008 11:16am

Hi all...Coming up on 4 years since I was diagnosed - hit me in 6th year (perfect timing!). Put off going to the doctor though, I think out of fear (for anyone reading, this is the worst possible thing to do!!!)...The parents did cop that something was amiss though so off to the doctor I went.

Had to go for a few scans - barium drink, colonoscopy, etc. Was in the hospital the mid-term week (i.e. the week before Leaving Cert mocks) but went in and faced the exams anyway! Still keeping this attitude of not letting it get me down or stop me in any way (I'm a stubborn lad when I want to be). Was put on Imuran (still on them to this day and for foreseeable future) but could be a lot worse.

Still don't tell many people though - hard to bring up in conversation, its been 4 years and I have known people all that time, people would get worried for no reason, etc. And I keep myself to myself most of the time anyway! Glad I stumbled upon this thread though...

nerdysal · 08-03-2008 11:22am

smccarrick wrote: »

Sal- you really had it rough. Well done re your mocks- you're an inspiration to some of the others of us. Taking an extra year to do leaving cert as you have discovered is not the end of the world- the very best of wishes in June. It does always tend to get stressful around exam times- so make sure you don't over do things. The very best of good luck to you, Shane.

Thanks Shane!!! I haven't actually taken an extra year. I was diagnosed at the start of 4th year. So it didn't matter how much time I missed. And I've managed to battle through 5th year and 6th yr. I always made sure to keep up with work and even go ahead of the teacher because I was always afraid that something like the operation would happen. What's kept me going to be honest is the fact that I'm a big Nerd. I love learning and I don't want my illness to hold me back. If anything it has made me all the more determined.
Trust me, I'm not going to get stressed about the LC. Naturally I'm going to be nervous but I've learnt my lesson. My health is so much more important.

Sabre0001 · 08-03-2008 11:25am

nerdysal wrote: »

My health is so much more important.

I also had this change of perspective - you realise that there are better or bigger things in life...Hope you get on OK!

nerdysal · 09-03-2008 4:40pm

It really is key to getting better. Alot of people rebel against their doctors and pay for it... it's just not worth it though!

The_Conductor · 09-03-2008 8:59pm

Sabre0001 wrote: »

I also had this change of perspective - you realise that there are better or bigger things in life...Hope you get on OK!

Ditto- I gave up a high stress job and accepted a paycut for a job that interests me a lot more and has the flexibility to work with whenever I get a flare-up.

On a related note- I'm on Imuran, along with a bewildering array of other medications at the moment. I've noticed in the last 4 or 5 months that I seem to be very very prone to periodic 1-day stomach bugs, accompanied by splitting headaches, which a day in bed along with Stemitil appear to take care of. Has anyone else come across similar sympthoms?

nerdysal · 10-03-2008 5:27pm

I'm going to have a tough week ahead. Went to my doctor today and I've been put on a course of antibiotics for a week. have to stop taking the Imuran.
Hopefully they won't affect me too much. I've never been so well so I might just be able to cope with them better! Fingers crossed.

I've only been on the imuran 3 months and I'm on a small dose of 50mg so I haven't been affected in that way from them...

nerdysal · 20-03-2008 12:55pm

Hey I was just wondering do any of you suffer from joint problems as a result of the crohns? I had to go to physio because of my back and I'll probably have to go back with my hip. Everytime I run my hip kind of stops working and I fall flat on my face.
Anyone else suffer with this or anything similar?

Crohn's Disease

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