Crohn's Disease

crohnsgirl

Hi everyone!
my name is karen im 20 and i was only recently diagnosed with crohns disease last year after suffering for a full year. It started with a small pain in the bottom of my stomach, i was constantly in the dotors and he always told me it was a kidney infection!

it gradually got worse from there and within a few months i droped to 5 stone. My GP then sent me to saint vincents mental institute as he told me i was causing harm to myself because i a supposedly making myself sick? I went through weeks of counselling and strangely enough it didnt work? i was sent home things got that bad my urine had pieces of my stomach in it! the doctor said id taken it to far! finally i went to see a different GP and he ran test and immediately sent me to the hospital after two months in hospital they still did not know what was wrong! then my bowel collapsed and i was rushed to have emergency surgery and only then did doctors realise i had crohns disease!

I had the majority of my bowel taken out and my bladder reconstructed as my bowel had rotted into my bladder.. after a few weeks i was sent home from hospital i felt really alone and sick as no one else could relate with how i felt finding out i had a disease and a huge scar down my stomach but i have got over that and just thank God im alive and well (as well as i can be) and iv been fine since.. iv put all the weight i lost back on and iv had no flair up's yet! im currently on 4 Imuran a day 50mg each and 4 Solfalk a day 200mg each!

I have yet to find anything that i cant eat yet! I still eat everything i did before i fell ill and some more.. so hopefully it stays like that! I really like my food! lol

Recently iv been having some pains and some swelling, im going to go the hospital to see whats going on il keep you updated!

Thanks for reading! Just thought id share my story sorry if its a bit long!:D

The_Conductor

Hi Karen, sorry to hear what you've been through. I can relate to a lot of it- I too was referred to a psychiatrist.

I'm not sure that there is a specific one size fits all diet for Crohn's suffers- people say to avoid salads and alcohol- different people find some foods to be absolute poison others fine- it really depends on the person. You should organise an appointment with a good dietician (St. Vincents where you are attending have a good team), who will be better able to sit down with you and give you some ideas of meals and snacks that are appropriate for you.

Sorry to hear that you haven't been feeling the best of late again.

Shane

Ciara D

Hi Shane and Cathy,

Nice to meet you both today.

I have never been on boards before so it will take me a bit of time to read back on everything. It is a very similar idea to what some of us have done on facebook, under Crohn's Ireland. Some of us that took part in the Manifesto for Young People set it up so we could keep in contact and share stories.

Talk Soon
Ciara

The_Conductor

Hi Ciara,

Nice to meet you too- sorry we had to run in a hurry- our 3 hours on the parking was up.

We have a 'Useful Links' thread- any useful links or information you might like to post there would be most welcome!

I took part in the Manifesto too- it will be interesting to see what transpires.

Welcome to our little haunt

Best wishes,

Shane

crohnsgirl

Hi Shane,
Thanks for your advice I was wondering were i could find a good dietician.. Im going to make an appointment with them soon hopefully because im positive that the food im eating can be good for me or my bowel!

Karen:D

LegacyUser

Hi crohns girl - I went through a similar situation with my crohns - I was also told i was making myself sick & not eating - but i was diagnosed with crohns at the time so they had no excuse to do that - anyway the gist of it was i went to another doctor who was appalled that they were treating me like that - and upped my medication and i put on weight and ate more in a week than i did in a year. so i empathise with what you went through - the one thing i learned from it is to trust my own body and how i feel and not to accept what anyone says if you feel otherwise. I must say they almost had me convinced that it was in my head but I definately wont be letting that happen again. All the best.

crohnsgirl

Unregistered wrote: »

Hi crohns girl - I went through a similar situation with my crohns - I was also told i was making myself sick & not eating - but i was diagnosed with crohns at the time so they had no excuse to do that - anyway the gist of it was i went to another doctor who was appalled that they were treating me like that - and upped my medication and i put on weight and ate more in a week than i did in a year. so i empathise with what you went through - the one thing i learned from it is to trust my own body and how i feel and not to accept what anyone says if you feel otherwise. I must say they almost had me convinced that it was in my head but I definately wont be letting that happen again. All the best.

Hey,
I know its a horrible feeling been made believe somthing so terrible when you know deep down you'd never do something like that the doctors are really not educated on crohn's disease and dont know how to spot the symptoms! Im glad to hear your doing good im doing good to date hopefully it stays like that for a while!

Thanks for your reply, keep well!

Green Hornet

It seems that doctors over here are very poor at diagnosing Crohn's Disease. My brother had problems for a few years and they more or less told him that it was in his head as well. Finally got diagnosed in the Blackrock Clinic a few months ago.

ladybirdirl

Hi All,

So I'm guessing some of you went to the ISCC open day Saturday?

I went along & found it to be very poor tbh.

It might have proved very useful for someone newly diagnosed but I heard nothing that I hadn't heard before or didn't already know.

I didn't think the meeting was set up very well or that the group running it was very approachable.

Anyone got any other thoughts

Ladybird

The_Conductor

It was a pity the surgeon wasn't able to make it tbh- but it was good to hear the gastroenterologist from JCM. I did think the use of slides and an overhead in a room like that was a little pointless- you couldn't see anything from halfway back the room- and even if you could- just how badly do patients need to see pathology slides? I didn't learn anything new- but I wasn't expecting to.

It was nice to put faces on some people, and renew old acquaintances with others.

To be perfectly honest- I think a social gathering where people could sit down and chat with each other might have merit?

CathyMoran

Hmm, was there with my husband (smccarrick) who has the condition - no, there was nothing new there but I still believe that the society has a valid remit trying to educate doctors about the condition as a lot of doctors seem to originally diagnose people with this (and other gastro-intestinal conditions) with psychiatric conditions. I know that I was accused of having anorexia originally when I had another GI issue, but that is a rant for another day... It was useful seeing other people with the condition.

Ciara D

Hi,

To be honest I did not learn anything new at the AGM either and I agree with smccarrick as I think if people sat around and spoke about their own experiences we would probably learn a lot more.

I do not understand anymore what the remit of the society is, as having Crohn's for 10 years I really do not get them, to spend nothing on advertising to me is a problem - people need to be educated on Crohn's.

If you were newly diagnosed - where do you go for practical living with Crohn's information????

If I have a problem I never think of contacting the group at all but I wonder if there brief is more research than support? I think that is the big problem there is no support!

C

Ciara D

Hi,

For those that use facebook we have also set up a page called Crohn's Ireland which is similar to boards.

All are welcome to join as a another point of information / support on Crohn's

C

kildareash

Ciara D wrote: »

Hi,

For those that use facebook we have also set up a page called Crohn's Ireland which is similar to boards.

All are welcome to join as a another point of information / support on Crohn's

C

Hi Ciara,

I can't find that page on facebook.

Would it be possible to post a link here?

Regards
Ashling

Ciara D

Hi,

I hope this is the link here:

http://www.facebook.com/home.php?#/group.php?gid=106491930028&ref=mf

Talk Soon,
Ciara

Green Hornet

My brother is going up for his second Infliximab injection on Wednesday. I hope it works better than the last (and first one).

He's been going through hell and I dont think theres any improvement in his condition. If anything he's worse. He's been on a steroid tablet a day + loads of vitamins (Iron, Centrum etc ) and Ensure. The problem is that he gets sick every evening and suffers bad pain in the ileal region. The pain extends to his back and now he's got little spots all over his body as well.

Could he be allergic to something in the tablets? Is this normal during aggressive treatment?

The_Conductor

Green Hornet wrote: »

My brother is going up for his second Infliximab injection on Wednesday. I hope it works better than the last (and first one).

He's been going through hell and I dont think theres any improvement in his condition. If anything he's worse. He's been on a steroid tablet a day + loads of vitamins (Iron, Centrum etc ) and Ensure. The problem is that he gets sick every evening and suffers bad pain in the ileal region. The pain extends to his back and now he's got little spots all over his body as well.

Could he be allergic to something in the tablets? Is this normal during aggressive treatment?

He needs to report any unusual reactions to his medication to his consultant. While it could well be an allergic reaction- however it could also be any of a number of different things- he *has* to make sure he keeps his consultant fully appraised of whats happening.

Green Hornet

smccarrick wrote: »

He needs to report any unusual reactions to his medication to his consultant. While it could well be an allergic reaction- however it could also be any of a number of different things- he *has* to make sure he keeps his consultant fully appraised of whats happening.

Thanks. He fully intends to go through it all in detail. The first time it was all a bit new to him. It's the regularity of the eat/pain/vomit that gets him down the most.

The_Conductor

The Manifesto launch is in Buswells on Monday (the 11th) @ 11AM. Hope to see some of you there! Shane

nerdysal

Hey Shane
I'm heading to Buswell's tomorrrow for the manifesto launch. It's my first time to be involved in anything like this so I don't know what to expect! Did you do that questionnaire for the manifesto? I have to say it was absolutely brilliant- it covered EVERYTHING!
Sal

ladybirdirl

Evening all,

So I went to the Manifesto launch today. It was a little disapointing in that I thought there would be some press there to spread the word but I think it's a huge step in the right direction.

The speeches made by Trish in terms of living with the disease & Victoria in terms of the manifesto were excellent...gave everyone in the room a very clear picture of what is dealt with.

Here's hoping it leads to something, particularly some recognition from the Government as IBD as a long term illness


Anyone who needs more info feel free to pm me

LB

The_Conductor

I thought the launch was very good. Well done to Patricia for standing up and discussing how Crohn's has affected her- I think everyone in the room could relate to large tracts of her talk. She came across really well.

One item which popped up- and which I raised several times with the ISCC, most recently at the AGM 2 weekends ago- is the matter of IBD not being recognised on the LTI scheme. The response from the table at that meeting was that the committee does not view it as something tenable to fight for- that it would take a lot of long term lobbying, and the impression I got was that there was a lack of will present, to pursue this. I was thrilled to see it raised today. People might say EUR100 a month isn't too much- but when you factor in regular blood tests, GP visits, Consultant fees, VHI/Quinn/Hibernian etc (and these are purely the medical costs) it adds up very very quickly. It would be a significant gesture for many of us- if the lifelong condition we have, were recognised as such- and the ongoing medication we require, provided in the manner it is for other long term illnesses.

It was lovely meeting everyone there- sorry I had to run (actually I'm not- I wish I had stay'ed longer- as two root canals testify).......

See you all soon,

Shane

nerdysal

I was well impressed with the manifesto booklet. It's well put together and I think it aptly describes what all of us as crohn's and UC patients feel. It is definitely a step in the right direction as regards the LTI scheme. Something like that will be a lot more powerful than people individually sending letters to local TDs and dept of health.
I didn't stay for long myself- I sat quietly in the back corner and then legged it afterwards because I was absolutely starving and needed lunch- don't know if anyone else suffers if there routine is upset but my system goes completely out of whack so I had to go!

waterford1988

Hi guys, need some help here.

About 4 weeks ago I had my first remicade treatment. Since then however I have been experiencing some terrible diarreha and stomach cramps. My Gp took some blood tests and he results from inflamation markers came back negative. After doing some research he said this diarreha can be an initial side effect to the treatment. I finally managed to get hold of my consultant and he tells me that remicade does not have his side effect and it is most likely the chrons itself. However if this is the case why would the blood tests not have indicated inflamation?

Im so confused with whats going on with me, im sure the stress of college exams is not helping me either, especially when i'm running to the bathroom about 3 or 4 times per exam.

Anybody experienced something similar?

LegacyUser

Hey -

Blood tests are not diagnostic of active crohns - basically they can still be normal and your crohns can still be active. My inflammatory markers NEVER go up - and I've had some serious inflammation, haemmorages etc going on. I'm saying this because I've had the same difficulties - ongoing symptoms and normal bloods - but you know what when they did get in there with a scope it was and is a different story. They wouldn't diagnose you with crohns without a colonscopy so I don't understand why some doctors insist things are ok after on the basis of a blood test - makes no sense to me! Anyway If you're not feeling well - your doctor needs to take heed and take it on board. It does take a while for remicade to work for some people so maybe ask how long do you need to wait for it to have full effect. Also you can be at risk for infections - so maybe you might need to give a stool sample to your doctor, just to rule it out. Remicade on the other hand can make inflammation heal really quickly so your gut may be adjusting to this - its a bit of a shock to the system - but if the diarrhoea and cramps persist your doctor needs to check it out - persist with him/her. Good luck!! You'll get there but make sure your being herd by your doctor - if you don't feel ok- you dont feel ok & need it checked out.

LegacyUser

Oh yea - if your having problems re exams in college - go to your college doctor & ask to be put in sick bay - you're entitled to have extra time as well to go to the toilet & take breaks so the crohn's isnt eating into your exam time.

LegacyUser

Hiya,

Iv never written on this before but just reading through this thread is great as I don't know anyone else with crohn's/colitis and it helps so much to hear other people's stories. I've had crohn's for over a year now and haven't managed yet to get it under control with steroids,imuran, and now humira. For anyone heading into finals or exams it is hard to study when you feel so crap and have to go to the bathroom in the middle of the exam several times, but don't give up hope it can be done!!I always had aspirations of getting a first class honors and in the end Crohn's didn't stop me from achieving that. Sometimes I get really down when yet again, you hear your new medication mixture just isn't working for you and I don't know what options I really have left now except maybe surgery, but I just try to remember that I achieved that first even though I was so sick and if I did that I can keep going and doing what I want to do(for the most part anyway!) I just read the manifesto and I thought it was brilliant and so helpful, it's so great to be able to compare your experiences with others and maybe have an idea of what to expect over the coming years.

BrianJD

Hi

I regulary follow this thread so i thought it might be no harm to introduce myself to it. I was diagnosed with Crohns in 1998 when i was 21 so i have gone through many stages of it. I've done all the steriods, 6mp, infliximax (which i became alergic to) and i'm currently using Humira, 1 injection every two weeks. I had one small bowel resection in 2002 and am due to go in for another next week (so theres my summer planned). If anybody has any questions or would like any opinions on any of my treatments, i'd be happy to share.

Thanks for reading!

LegacyUser

Hi Brian -

I've a question for you! I'm about the same as you re meds at the mo - on humira. What I wanted to ask you is why you got the bowel resection? Because I've got severe ongoing pain at times waking me at night & stopping me doing things during the day I'm taking strong painkillers for it - but at the same time the meds are settling my diarrhoea - i know my cts have thickening of the bowel & there was mention of surgery before - so i guess i'm just wondering if you've any symptoms like mine - Thanks And best of luck with the operation - if its any consolation its probably going to rain the whole summer here

divinereef

just wondering do people know that long tern use of steriods can lead to brittle bones ,,,,,,,,:mad: