Crohn's Disease - a discussion

[nomorepanic]

I have Crohn's as well and have been off work over 6 months with a flare up and several abcesses that are still draining and I am still not over the worst yet I don't think!

[the_nub]

Gotta love those abscesses. Definitely my favourite of the various Crohns complications!

[nomorepanic]

Have you had an op Nub?

[the_nub]

Yeppers. Had a huuuuge abscess right on my bum - it's how they diagnosed me - and when antibiotics didn't work, they finally operated on it. Twice, cos they didn't get it all the first time. This was AFTER it fistulised out to the surface and leaked THE WHOLE TIME. Doctors, eh??

Had to have the district nurse come every day and pack it from the inside out with sorbsan, so it didn't heal over the top. Then had to have a third op to restructure my bum area, cos the abscess had cheerfully entwined itself round my *whisper*sphincter and removing it had damaged the muscles.

All good now, though...with impressive bottom scar tissue!!

[the_nub]

Or, should I say, rather than "how they diagnosed me", it's how they started thinking Crohn's was what I had, after I hadn't been eating for three weeks. Having a colonoscopy with The Badboy (as it came to be known) sitting on my bum was NOT pleasant....!!

[nomorepanic]

Ouch sounds painful!!! Sorry to hear you had to go through all that.

I have abcesses on my bowel and fissures so the bowel is leaking and I have a hole in the abdomen draining them and a bag on it to collect the pus. Had this 6 months now.

The joys of Crohn's eh???

Do you find the meds you are on work well?

I am sorry for taking over this thread - perhaps we should start our own Crohn's thread lol

[the_nub]

Not on meds any more! Fully in remission (touch wood....not good at the moment for the first time since in remission).

Was on prednisone - didn't work
Added to prednisone was pentasa (OMG, size of horse tranqs!) - didn't work
Put on azothiaprine - didn't work
Moved to 6-MP - didn't work
Doctor starts muttering about colostomy bag...I throw MASSIVE sh!tfit as I was 22 and DID NOT WANT a bag...so I got angry, went online, and made a big document about all the other treatments I could jolly well have before they made me have a poo bag....
...doctor agreed to give me Infliximab. Had 8 infusions on the NHS - found out later how much this costs, OMG - and since then, been fine!

Can eat properly and everything!!

So if it wasn't for that, I'd still be ILL TO THE MAX.

Worth mentioning Infliximab to your doctor...??

[the_nub]

If you have abscesses leaking out of yourself, they really should think about Infliximab.

[nomorepanic]

I was diagnosed with this after a few years of suffering with constant diarrhea and was told that was anxiety.

I created this post to talk to other sufferers.

[the_nub]

Hello! :)

DEFINITELY bring up Infliximab with your doctor :)

[nomorepanic]

I was on prednisone and recently came off azothiaprine as the side effects of sickness were too bad and I have been in hospital 3 times this year with it!

I was on Pentasa since Dec 2007 until 2 weeks and stopped it cos of the 6 MP. I used to dissolve them in water lol

Am now on 6 MP - just 2 weeks in and anti-biotics.

I heard about the cost of Infliximab!!!

I was due an op on 27th march to get a colostomy bag and I cancelled it cos I didn't want it!

Seems like you have been on the same meds as me!

Thanks for the info

[the_nub]

Pred made me swell up like a balloon. High point of the Pred Era was a bus journey that involved a little child pointing at me and saying, "look at that lady's giant head, mummy!"

Aza reacted badly with me, too, which is why I got put on 6-MP! Was on 6-MP throughout the Infliximab and for a while afterwards too. The prob with infliximab is that if I ever flare up badly and need it again, you can have a bit of a reaction to it. So fingers crossed I won't need it again!

Seriously though, before you get the stoma, press and press for Infliximab. I dread to think where I'd be now if I hadn't had it. I am a teacher - I have wanted to be a teacher my whole life - and the thought of Crohn's beating me and stopping me teaching was what got me angry enough to do all that research. :)

[nomorepanic]

I am currently moving hospitals and consultants as I got lumbered at Bedford hospital due to having a heart attack at home and it was the closest one to go to so they took over my Crohns care as well but now I have gone back to my original consultant in Cambridge.

It is good to talk to someone else that has it as no-one understands the pain I have been in and how down I am with things and this stupid hole draining pus for 6 months.

I will ask him about Infliximab when I see him next and thanks for all the info - seems like you know a lot about it and have been through all the meds lol

[the_nub]

:) That I have!

Mine was draining constantly, but was on my bum rather than stomach. I can't imagine how awful it must be for you in that position....how you've dealt with that and a heart attack, I do not know. Here you are on a HA forum...no wonder you have HA, jeeeeez! Puts my silly worrying about dying to shame, it really does.

My abscess...it would literally drain cupfuls a day. I used to have to *whispers*pack a load of bandages/tissues and stuff down there to soak things up. My whole bum was purple...nightmare! When they cut it out, they installed this little system of elastic band/wire things (sutures?) to keep it all open and draining without healing over and filling up again.

It was fun, like I say, but yours sounds about a thousand times worse!

I was at the Queens Medical Centre in Nottingham for most of my treatment as that's where I was at University. The beginning of my treatment - when they found out what the abscess was and sent me for a colonoscopy - was right at the end of the uni year (june) and I had some treatment at the RUH in Bath (my home town). That was AWFUL and I was so glad to be back in Notts and in a proper hospital that didn't treat me as though it was trying to KILL me...!!

My other exciting experience was being given a barium swallow before being packed off on the bus to go home on my own....and then, of course, dealing with the inevitable "barium needs to come out, and fast!" extravaganza.

Crohn's is a horribly emotional thing because it's so undignified...but it has taught me two very valuable lessons: a) how to deal with poo, sick and other bodily fluids, from myself and/or others, without batting an eyelid, and b) that if I kept going through Uni without dropping out and that I could make a consultant give me medicine he REALLY didn't want to give me, that I can do anything I bloody put my mind to!





...why the hell am I crippled by HA, though, if I was fine when I had Crohns at its worst? Why NOW do I think I definitely have cancer? Is it some sort of delayed reaction??

[nomorepanic]

Hi again - sorry for not replying last night but I went to bed then been out and about today as well.

I am sure that having an abcess on your backside is not much fun! I have a hole in my abdomen that goes down by the bowel where I had 4 or 5 abcesses. Initially I had a tube attached to a bag and that drained the pus off. When I left hospital in November they took the pipe out and now the hole stays open on its own and has never healed up so the pus can still run out.

I have a hole in the bowel so sometimes I get food leaking out and when I get air coming out it is really freaky and feels so weird!

I do not suffer from HA fortunately which is just as well with what I have been through the last 6 months. I am great believer in "what will be will be" so if I am meant to get cancer or just drop dead then I will. I was obviously not meant to die of the heart attack and I didn't!

Mine certainly isn't a thousand times worse as you need to sit on your bum whereas I just have a bag attached to my side that I can change as and when I need to.

I have had many CT scans, barium x-rays, normal x-rays, colonoscopy, sigmoidoscopy etc as I am sure you have. The worst has to be the colonoscopy prep day as I wasn't too happy about spending nearly 24 hours sat on the loo!!

Have you ever tried Modulen? It is a drink specifically for Crohn's. I had to go on it for 4 weeks - 8 drinks a day and nothing else except water. Couldn't even have a cuppa.

I still have 3 or 4 a day now as I am sure it does help the bowel heal.

That was hard hard work and I was so desperate to eat normal food again! I had to leave the ward and go for a walk at meal times as the smell was so lovely of real food and all I got was a milkshake drink!

When I got out of hospital I did start eating small amounts of real food again but oh my god the pain when I went to the loo. It made me cry with the agony of it.

They had to give me morphine to have at home cos I was in so much pain generally and even today I am still taking tramadol and paracetamol all day.

Did you get any side-effects on the drugs like muscle pain - my joints are killing me and I have knee pain, leg ache, back ache etc. They said it could be drugs but they are not sure!

Crohn's is horrible I agree and I don't think people realise how much pain it can cause - I have a high pain threshold but even this has left me in tears a lot with the agony of it all.

What do you think you have cancer of? bowel? or somewhere else?

Hope to catch up again later when you have replied

Good to talk about it with you.

Anyone else is welcome to join in if they want as well.

[the_nub]

Allo!

Oooh, never even heard of the Crohn's drink. Is it expensive?

There was a time when all I could eat - and this was at a push - was sugar free jelly, dairy free ice cream, and chicken without anything on it. I LOVE FOOD, particularly vegetables, and that whole time KILLED ME. I was almost glad of the bum abscess, really, because everyone thought I'd gone anorexic and didn't believe me when I said I literally couldn't eat....then when The Badboy popped up the doctors were like, "oh, it's Crohn's." Hahaha!

Joint pain comes hand in hand with Crohn's. Some special type of arthritis, I think. The funny thing with me was that I never had any when the flare ups were at their worst, but AFTERWARDS...I'd been largely symptom free for about six months and suddenly got the WORST joint pain for about three weeks. Getting out of bed in the morning and putting my feet on the floor was absolute agony. I'd have to do it really slowly to give my body time to adjust to walking around after being asleep all night.

I have an incredibly high pain threshold too...largely cos if I can stand a nurse poking loads of thick cotton wool into a hole in my bum, I can stand anything!...but you're right; people do not understand the rainbow of pain that is Crohn's disease. Pain in your bowel when you eat. Pain in your bowel when things get trapped. Pain in your bowel and everywhere else when you try to poo. Pain in your bum with fistulas, fissures...all sorts. Pain in joints. Stomach pain. It's ridiculous!

As for where I think I have cancer, of course I think it's EVERYWHERE. I honestly do not understand why, in the past 6/7 months, I have developed this HA when I was fine when Crohns was at it's worst AND when I had a breast lump last year. Took it all in my stride. Main cancer fears at the moment are bowel, ovary and cervical...but it's mainly the fear of metastasis, particularly to the brain, that is worst at the moment. :(

Ho hum!

[nomorepanic]

I get it on prescription so I get 12 cans each time and have a pre-payment certificate so it costs less per year for me.

Each can has the equivalent of 8 drinks in it. Each one is 250ml and you mix it with water.

Have a read of this ..

http://www.nestlenutrition.com/en/nutrition_healthcare/crohnsdisease_product.htm

I am still only on limited fruit and veg a week and instead of 5 a day I have 5 a week! I hope in time to be able to eat more but for now I am on a low fibre diet and have to watch what I eat.


Getting out of bed in the morning and putting my feet on the floor was absolute agony. I'd have to do it really slowly to give my body time to adjust to walking around after being asleep all night.

I have mentioned this to several doc and not one of them said it could be the Crohn's - they just said it could be the meds and just told me to take pain killers. I agree that getting out of bed is the worst! I stand at the top of the stairs and think "How am I going to get down there" - it is that bad!

How long were you really poorly for until things got better?

Odd how you can worry about cancer having been through so much with the Crohn's as well. I do hope you can get some reassurance on here with that.

I went to see a friend yesterday who has had Crohn's since he is 17 and is now 46. He has cancer and only days to live and it was very upsetting to see and od course it has worried me but I have to remain positive and strong for him.

[the_nub]

If you look up the link between Crohns and arthritis you should find a whole bunch of stuff to do with it. :)

I was Crohnally ill for...three years ish? Which, in the grand scheme of things, is a pretty short time. I was just lucky they agreed to give me Infliximab. Fingers crossed it won't come back!

[nomorepanic]

I had a read and it does look like I have it but will probably be best to get it officially diagnosed before I start taking any more drugs etc.

Thanks for all your help it has been very valuable information.

[the_nub]

No worries! Lots of people have absolutely no idea about Crohns and its implications, so it's always good to meet a fellow Crohnie and share stories! :)

[nomorepanic]

Obvously there are only us 2 on here that have it as no-one else has joined in our little discussion lol.

I am quite old to have it - I was diagnosed at 40. I am sure I had it for years though without it being officially diagnosed.

How old were you when it was diagnosed and how did they discover it if you don't mind me asking?

[the_nub]

I was 19/20 (can't remember exactly...think I was very nearly 20) and they diagnosed me because I had the abscess. I hadn't been eating at all for weeks, or was throwing up anything I kept down, but I thought it was just stress. They told my the abscess was piles at first, but then after a few months of it, it fistulised through to the surface and pussed everywhere (nice!)...so I went again and they were like, "hmm. Not piles."

They thought it could be a perianal abscess - a sure sign of Crohns - so they asked me about eating/food and it all started slotting into place.

Got sent home from Uni - it was right at the end of my first year - and had a colonoscopy about a week later that confirmed Crohns.

That was a fun summer, and year after that at Uni!! Three operations later I still wasn't better, which was when they started yammering about colostomy bag. Which is when I got cross and demanded Infliximab!

:)

[nomorepanic]

I think most get it young but I like to be different :ohmy:

I have been to docs today about the legs pains and asked about arthiritis and she said it could well be but she cannot give me much for it because of the medication I am already on for my heart. :wacko:

I am going to see my Crohn's specialist as well to see what he says but she said to carry on with paracetamol and Tramadol and hope it goes when this flare-up goes.

On a good note my CRP is now only 4 :yahoo:

It was 85 at Xmas and 434 when I was in hospital so coming down well.