Crohn's Disease

MacXP_Irl · 13-08-2007 12:13pm

sounds amazingly familiar, I wound up at 8.5 stone at my worst.
Small bowel follow through, mmm barium! I'd one of those done in the "early days" and it turned up a stricture too. Thats just a narrowing of the intestine due to the disease. There are a few scenarios as far as I can see.
1) the stricture is recent caused by a Crohns flare and inflamation of the tissue; in which case they'll tackle it medically and hope the inflamation and the swelling goes down.
2) the stricture is old; the tissue is scarred and inelastic so depending on location they can try to use an angioplastie balloon to stretch it or they will remove the section of it surgically.
Depending on the strictures location you could have an ostomie bag for a while to allow things to heal. In my case they took out the nasty bit and plumbed me back up in the one procedure.

If you have any questions let me know.

lizanne000 · 13-08-2007 12:44pm

Sounds scary, wow i hope its not that bad!!!
I am really sick of it though, just had a slice of toast and i am in bits again!!!

What foods do people find affect them???

MacXP_Irl · 13-08-2007 1:43pm

yeah it can be scary, but dont worry about it too much, its out of your hands at this point. Just keep asking the doctors questions!

how long have you been in pain? Weeks, months?

As for food, everyone is different. Post surgery I really only have problems with minced meats, so spag bol, lasagne, burgers & stuff can be difficult.

lizanne000 · 13-08-2007 2:05pm

I have been on well for a long time now, but the severe pain and not being able to eat properly about a month and a half!!
So tired of it and really wish I would get it sorted.

I find veg. Fruit and mushrooms are a big massive no no!!! Spicy food, but at the moment I can not eat anything, that is not affecting me. I just had a chicken cuppa soup now and the pain is already getting bad!!!

Ooh and Mints and fizzy drinks I can not drink either!!!

lizanne000 · 13-08-2007 5:24pm

Finally something is happening.............. I have an appointment with Prof. O'Donoghue in the Mater Private on the 25.09.07, Thank God!! i will just sit by and wait for this now and chase everywhere for my files and results of tests!!

Just thought i would let you all know!!!

o1s1n · 13-08-2007 5:33pm

lizanne000 wrote:

Finally something is happening.............. I have an appointment with Prof. O'Donoghue in the Mater Private on the 25.09.07, Thank God!! i will just sit by and wait for this now and chase everywhere for my files and results of tests!!

Just thought i would let you all know!!!

Good luck!

CathyMoran · 13-08-2007 6:13pm

That is great news, he is a brilliant man.

The_Conductor · 13-08-2007 6:17pm

lizanne000 wrote:

Finally something is happening.............. I have an appointment with Prof. O'Donoghue in the Mater Private on the 25.09.07, Thank God!! i will just sit by and wait for this now and chase everywhere for my files and results of tests!!

Just thought i would let you all know!!!

Well done Liz,

Prof. O'Donoghue is absolutely brilliant- you will be well taken care of.
Sorry to hear that your weekend didn't go very well- make sure that you drink plenty of fluids. It might be an idea to take some food supplements (I know some of them taste ghastly, but they are good for you......) Fortisip have nice new fruit juices that taste pretty good (and you can get them on the E85 a month scheme).

Hang on in there,

Shane

lizanne000 · 14-08-2007 8:55am

Thanks everyone, I got to have my dinner last night, was not a big dinner but it was something, Hopefully things are starting to pick up, only thing is as i have not been eating i have no energy at all, i am in work now but think ill be asleep in a few mins!!! zzzzzzzzzzzzzzzzz

Thanks again for your help, it really has helped and its great to speak to people that understand!!!

MacXP_Irl · 16-08-2007 11:47am

good luck Liz, you might want to consider something like Ensure Plus HP drinks (ask your doctor) form the chemist to keep you ticking over until they decide on a treatment. Strawberry, bananna, vanilla arent so bad.

The_Conductor · 16-08-2007 12:13pm

MacXP_Irl wrote:

good luck Liz, you might want to consider something like Ensure Plus HP drinks (ask your doctor) form the chemist to keep you ticking over until they decide on a treatment. Strawberry, bananna, vanilla arent so bad.

There is also the Fortisip fortified fruit juices- the applejuice one is quite tasty, if slightly viscous..... Do get a prescription from your GP for these- then you can pick them up on the 85 Euro a month thingy.

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.......

MacXP_Irl · 16-08-2007 3:28pm

I know, I was shocked when I was diagnosed and then found out it wasnt. Thankfully I had the drugs payment scheme card because otherwise that first months bill of medication would have crippled me!

o1s1n · 17-08-2007 1:11am

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.......

I heard somewhere (Cant quite remember where) that there has been some talk of this happening.

I really dont understand why it wouldnt be part of the scheme. I mean it is a long term illness, pretty severe for some. Wheres the problem?

The_Conductor · 17-08-2007 7:08am

o1s1n wrote:

I heard somewhere (Cant quite remember where) that there has been some talk of this happening.

I really dont understand why it wouldnt be part of the scheme. I mean it is a long term illness, pretty severe for some. Wheres the problem?

The problem is finances- and the simple fact that unlike the other long term illnesses- Crohn's Disease doesn't have a good group of people lobbying on our behalf (unlike Diabetes and other serious conditions). Certainly there are helpful groups- but they tend to be groups of sufferers, who by the nature of their conditions, don't tend to have a lot of spare energy to divert elsewhere..... It really by all rights should be in the long term illness scheme of course though......

MacXP_Irl · 17-08-2007 12:34pm

what about the http://www.iscc.ie/ they had a talk about Crohns & UC down in Limerick last year I think, informative.

who would we lobby about getting it on the list though, any one have any media/political connections?

The_Conductor · 17-08-2007 6:06pm

MacXP_Irl wrote:

what about the http://www.iscc.ie/ they had a talk about Crohns & UC down in Limerick last year I think, informative.

who would we lobby about getting it on the list though, any one have any media/political connections?

I'm not allowed to make representations to politicians unfortunately

smoochie · 24-08-2007 9:50pm

Hi All

I too have had Crohns disease since I was about 17. I was only diagnosed properly (after years of pain and suffering) when I was 25. At that stage things had gotton so bad that I had a stricture (narrowing of the bowel) and everytime I ate I would be buckled in pain. I ended up not eating at all as it was easier. Eventually I was diagnosed by the Gastro Team in St Vincents Hospital, Mr Mulcahy and Prof Donoghue were exceptional. They really listened and within a short few weeks I was feeking a little better through Steroid use. In my case unfortunately I had to have a right Hemicolectomy-part of the small bowel removed. It was the best decision I made. I had 6-7 years of being nearly symptom free. However you are never fully free from this illness and to my upset I am now starting treatment all over again as I have quite a serious flare up going on since I had my son in January. I dont know why this has happened now. Its the worst time for me as I have had joint pain and muscle weaknesss so have had big problems in looking after my son, cant lift him etc sometimes. I am looking into getting some home help. The other issue is that I am due back to work in 4 weeks and I dont think Ill be able for it. Treatment-wise I have been given Imuran, I was only on it 3 weeks and I ended up in hospital with a very serious infection. My liver function tests also have been highly abnormal as well as other blood tests. I have been taken off Imuran and now put on Pentasa. To make things worse, the acting doctor tells me today that he 'doubts it will work', and that I will probably have to go in the iv of INFLEXIMAB. I am willing to undergo any treatment to get well again, but am heartbroken that all this is back again. All I want is a normal everyday life where I can give my Son the attention he needs and deserves. Just wanted to let ye know that there are lots of people out there just like us. Here's hoping that research finds a cure for this curse of an illness! Good luck to all of you, Ill keep in touch if any of you have any questions or need any advice at all.
Take Care

Handrick · 26-08-2007 3:00pm

Hey all,

Got diagnosed with Crohns back in May after being misdiagnosed for a few months which really messed me up.. was on Prednisonale which I am coming off now, though the docs did not want me to...(that drug really messed my head up along with various other side affects)... also on Pentasa which I hope to get off soon to... much to my docs annoyance...lol...:p

Have been trying to deal with this with diet instead of drugs and with some success... of course doctors say there is no connection between diet and something wrong with your digestive system.... ehhh...right!:mad:

personally I don't think doctors have a clue what they are doing.. just the usual "here's some drugs for a quick fix"... which sometimes you need as you end up in such a bad way from the incompetent medical profession.:eek:

here are some interesting articles...

http://www.medicalnewstoday.com/articles/76578.php

http://www.news.cornell.edu/stories/Aug07/crohnsRN.kr.html

also check out this site www.scdiet.org

Best of luck to you all... hope we can all get pain free for good!!

Andrew:D

MacXP_Irl · 26-08-2007 9:10pm

I was initiall on Pred before, it gave me terrible moodswings. The secont time I was on it I broke out in acne. I was on pentasa for a good few months too, but that gave me insomnia! I usually get every sideeffect a drug has. For anyone new to the disease they might want to check out here:
http://hx.o3world.com/index.cfm?selectedVideo=12

@smoochie, there is a new drug on the market called humira which operates on a similar principle to infliximab but its made with human rather than mouse protein. Its also home injectable as far as I know. It might be worth asking your gastro about.

inchydoney · 10-09-2007 1:51pm

hi.have not posted in a while. may i suugest people have a look at http://www.breakingtheviciouscycle.info/index.htm. i have researched this disease for the last 4 years and tried absolutely everything. i have ulcerative colitis.the theory is that you do not put in foods that require further digestion and put work on your body - .i.e complex carbs that need to be broken down but cant be. anyway i started it 2 months ago and was the best i ever have been with minimal meds.unfortunately i have flared again afetr some alcohol and other minor slip ups but i am now trying to get back on track.if this doesnt work for me i will get the surgery - have been dead against it but that is all that is left for me now. alll meds traied - off steroids since junes.oftern you may think the uc or chrons is giving you muscle / joint problem but many of these drugs have these side effects.

St Vincents are great. Mulcahy and O DOnoghue and the nurses in particular. all doctors will say diet has nothing to do with it - but you know your body best.food may not cause it but changing it so that it does not further irritate your gut is worth doing.the doctors want you to get well and have been very supportive of me trying all these alternatives - and i mean i have tried everything - even helminth therapy from germany.if i had known about this diet i would have avoided alot of meds since then - but then again i dont think people will try it until they run out of options. it is hard - you have to be very disciplined.when one is ina flare it is very difficult to keep things in. i find the chhickn soup with vegatable juices added is best - so far so good anyway. you have to prepare your food.

defintely avoid sugar, bread, pasta, starches eg in potatoes and parsnip.milk.keep to meet and vergatiables- old style eating. it si hard but once your gut settles, you get used to it. its how our grandparents ate and the diet is very nutricious.
Anyway best of luck with it - drop me a line if anyone needs to know where to source things.

i too think it should be covered under lon term illness. i even wrote to seanmus brenna td before the election and he was lookng into it. too late now - they are back in poser

bets of luck to everyone and to your partners - it aint easy being them either
inchydoney

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:)

Crohn's Disease

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