Has anyone or does anyone know anyone with Crohn's Disease?

Chat Forum

[closed]

Has anyone or does anyone know anyone with Crohn's Disease?

29 posts & 17 voices | Started 2 years ago by willy | Latest reply from big-bad-one

Tags:

No tags yet.

willy - Member

my girlfriend has been diagnosed with it in the last few months and id just like to know a bit more about it. what are other peoples experiences? like symptoms and medication that they have been on? what age have they gotten it at and age they are now and how it affects them now... anything really?

Her experience so far....had major stomach pains for a few months, got so bad she couldnt eat so ended up with numerous hospital visits and medications... finally ended up with the doctor puttin her on pentasa once they had decided she had crohn's but that did not alot so a few months and much more pain later they put her onto an 8 week dose of steroids which totally blocked out the pain, reason was aparently the pentasa takes a while to kick in so steroids would block out the pain while they started to take action, she has recently come of them and felt fine for a while but has the odd pain here and there but feels majorly better than before, its much more bearable, because she is still experiencing pains the docs are on about putting her on some new pill which stops your immune system working but they seem to have some MAJOR side effects?? so doesnt seem worth it, might as well just endure the pains instead of risk these things.

anyway ur experiences please as i would like to know what other people know about it.....

thanks in advance!!

Posted 2 years ago #
crikey - Member

[url]http://en.wikipedia.org/wiki/Crohn's_disease[/url]

Good a starting point as any...

Posted 2 years ago #
neilsonwheels - Member

A family friend has it. Had a lot of trouble with his guts. Don't know to much about it but ten years later he seems ok. I know he went through a lot of shite though. To top it all his missis was cheatin on him.!
Although i am sure thats not a side effect.?

Posted 2 years ago #
bigsi - Member

Ok i don't know too much about this in terms of medication etc but the other halfs twin brother has it.

He was late 20s when diagnosed, they thought it was his apendix till they went to take them out and had to remove 1/3 of his stomach.

He seems to control it mainly by diet and drinks Yakult (sp) to help his digestion. He tries to avoid food that is high in fiber and carbs like bread, potatoes pasta and rice and sticks mainly to white meat, fish, veg, pulses and fruit.

He is under a consultant for regular check ups and doesn't seem to have much in the way of problems although i do know of other people who have had other different experences with Crohns.

Good luck to your girlfriend with this and tell her to follow her consultants advice & she should be fine.

Posted 2 years ago #
willy - Member

to be honest i think ive given the wrong impression as to what im wanting to know... i suppose i know quite a bit about the disease, i just kinda want to know other people experiences and what medications they have been on, there are many, and what symptoms they have had, again theres a few, and just generally how people have handled it. cheers anyway crikey.

Posted 2 years ago #
Alphabet - Member

When I was at school my best friend had it. We're talking 20 years ago now but the description of your g/f's problems/symptoms are almost exactly the same as he had. He was on various drugs including steroids as you've mentioned. He ended up having an operation, which sorted him out. I can't remember the full details but I believe they removed the offending section. I'm sure Google will give you the full details. I imagine treatments and drugs have advanced a fair bit since then. Good luck to your g/f with getting it under control.

Posted 2 years ago #
crikey - Member

I've only seen/nursed people with it, can be nasty, can't be 'cured' in any conventional sense, but can be managed very well these days.

Posted 2 years ago #
knottie8 - Member

my son has Crohn's and liver desease , he has it under control using lots of drugs, the worst bit was a constant fear of getting caught short and needing the loo but he manages that . My son has a pretty normal life although he suffers tiredness and has to be carefull what he eats. Roughage sets him off. you can have a good life with crohns.

Posted 2 years ago #
andywhit - Member

I had ulcerative colitis for about 10 yrs which is similar to Crohns. Not pleasant but manageable. I was originally told that I'd need to be on drugs for life but I was lucky and it burnt itself out and haven't had to pop a pill for about five yrs now.

<touches wooden object>

Posted 2 years ago #
tails - Member

i know a matey thats got it don't what meds he's on but them stomach aches knock him for six just has to crawl up on ball and lie there. What i would say is any drug that disables your immune system is bullshit , surely know doc would prescribe that (does it actually stop your immune system?, or is that a bad explanation) as really your describing will leave her open to all sorts of shit TB, pneumonia, basically what a HIV + person could expect without meds.

I would advice not to take that as your saying if the effects are more major than right now how is it worth it go speak to some other crohns suffers, there must be a forum online somewhere.

good luck

Posted 2 years ago #
Rickos - Member

A friend has it (first symptoms at about 33 or 34) but she was diagnosed very late and ended up being rushed into hospital after losing about 3 or 4 stone and about a week from dying. They operated and cut out a portion of her gut. She was then on a colostomy bag for 6 months while it all healed, went back and had the bag removed and is now all good. She has to be careful what she eats and stuff, but she had a close call.

Posted 2 years ago #
willy - Member

cheers guys realy helping!!! well at the minute she is only suffering from minor stomach pains, kinda like wind pains but worse lol, and thats all so for now, to begin with she was suffering from MAJOR pains like you say just curling up in a ball and bearing it! i think shes just gonna continue on the pentasa and consider this new drug, which the doctor has recommended, in a few months.

crohns is when ur immune system kinda attacks iteself in ur digestive system so stopping ur immune system should stop crohns, but in the leaflet she has about it it does say it leaves you open to lots of quite serious side effects.... osteoperosis, lymphoma, avoid people with flu etc. as that can turn nasty very easily in you, more sensitive to sun on skin...skin cancer the list continues a long way.

i was wondering what drugs people have been on if anyone knows e.g. pentasa? also how long have these taken to work? shes been on pentasa a good while now and still gets pains now and then. she has been told she has narrowing of the small intestine so has to avoid high fibre foods.

Posted 2 years ago #
willy - Member

btw she was 18 when diagnosed and now 19.
anyone else been told that its supposed to be caused by stress??? i really dont get this as shes the most unstressed person i know!

Posted 2 years ago #
thelegsdontwork - Member

You can get info about all sorts of stuff from http://www.crohns.org.uk, http://www.nacc.org.uk and http://www.ibdclub.org.uk.

Posted 2 years ago #
willy - Member

Rickos - sorry to hear about that, and glad shes ok!!! i know about the surgery side of things roughly but thats only after a good few years i think so my GF is well clear of that for now...but when she had surgery i take it it was the first time she had had it? also is a colostomy bag a thing where you are kinda fed through a tube? if so can she eat normally now? can you explain what happened with that a bit more as my girlfriend is quite worried about it eventually having to come to being fed through a tube, as she has been told if you have surgery a few times that can happen. thanks!!!

Posted 2 years ago #
andywhit - Member

Even though the doc said that the cause wasn't known, my colitis seemed to be triggered by stress. As such I try and be *very* relaxed about work issues and am very much work-to-live not live-to-work.

Posted 2 years ago #
willy - Member

thelegsdontwork - that crohns website is really rather good thanks a lot!! lots of things i didnt no and reassure me on there! cheers mate

Posted 2 years ago #
theotherjonv - Member

My wife has it but touch wood seems to be a very mild form. Has had two attacks, one self corrected but the other ended up with the investigation (and the Picolax!!!!!) which diagnosed it for sure. This was about a year ago now.

She took steroids for a while and then dropped these out and now takes only Pentasa (4x500mg twice daily) Docs are gradually reducing these almost to see if she starts to develop symptoms again, so they can see what her maintenance dose needs to be. She has no trigger foods that we identified so why she had the attacks in the first place is difficult to say.

There was a guy on here who gave some really good advice and links but that was before the hack. I'll see if I have some of his old emails on my work PC tomorrow. His daughter has it really bad and sees 'experts' down in Sothampton I think, a guy who is supposedly one of the foremost experts in the field, and who has some specific ideas on treatments that do vary a bit from the pure drugs route if they aren't working. Might be worth seeing if your GF's specialists know this guy and whether they feel a consultation with him may help. One thing he did say apparently is that it is genetic and while at present there are only treatments and no cure, with the gene therapy treatments that are the big development in biomedicinal research now, he feels he will see a cure of sorts 'within his lifetime'.

Will send more if I can find it, HTH and good luck for now.

Posted 2 years ago #
tyger - Member

Hi there, my daughter has it so email me any advice or info anytime

tyger (at) talk21 (dot) com

Posted 2 years ago #
birky - Member

Back in my late teens (20+ years ago) I had a couple of operations because of crohns/ulcerative colitis ... the diagnosis switched back and forth and I'm still not sure which I've got (had?). Fortunately I've never been on medication, haven't needed further treatment and am not on a special diet. I do sometimes get bouts of diarrhea which are more likely if I get stressed.

Posted 2 years ago #
willy - Member

theotherjonv - that fills me with a lot!! of confidence, the fact that, that dude reckons there will be a cure in our lifetime, put a big on my face! also thats what my gf is on just now 8xpentasa a day and they are massive and shes shit at takin pills... well not any more lol.

tyger - emailed!! cheers

Posted 2 years ago #
thomthumb - Member

i have two friends and two cousins with it - they vary in severity.

both my cousins are on a lot of drugs - one eats meat and water and very little else - typical diner for him steak and a chicken breast! almost no fruit veg etc.

one of my friends had an operation to shorten his intestine (i think it was intestine) which has helped, it does mean he has to be careful to top up with dietry supplements as he absorbs little from food - also eats a shitload and never puts on weight - 6ft tall and sometimes struggles to be 8 stone! it has helped with the pain though.

it is most hard for my young cousin -about 15 - as he like most teenagers, wants to be 'normal'.

all of them manage it through a combination of diet, pills andfamily support.

as an aside - has anyone tried aloe vera? does wonders for ulcertaive colitis - my dad has gone from very very bad to being signed off by the specialist.

Posted 2 years ago #
tyger - Member

You've got mail willy

Posted 2 years ago #
tyger - Member

theotherjonv - I think it was me.

Posted 2 years ago #
tyger - Member

You've got mail again

Posted 2 years ago #
Digimap - Member

Hi Willy, Similar story here with the GF diagnosed maybe 10 years ago, currently managing on pentasa. Not sure how much extra help I can add, the websites posted above have all the technical know how.

In our experience chrohns varies enourmously in individual cases, it also tends to come and go with relapses then periods of remission. The docs tend to monitor things like bloods for deficiencies, we had a period of calcium for osteoporosis amongst others. The depencany on being near a toilet is something that can be trained so can be overcome for all practical purposes. The advice on flu avoidance is good. We've concluded the GF has a very low immune tolerance and has had two bad doses of flu, the most recent leading to 18months of balance issues which are more delibitating than the chrones. I'm sure your standards are excellent but maintaining very high hygene is a good avoidance strategy for secondary problems.

Posted 2 years ago #
domino - Member

I have a fried with ulcerative colitis - the need for her to be near the toilet, even when her symptoms are controlled is always at the front of her mind. Its the first thing she wants to know when going anywhere new. She mentioned to me that when she was first diagnosed, she found a local support group helpful, as it meant she could talk openly about some of the embarrassing stuff. It may help your GF also.

Posted 2 years ago #
Rickos - Member

willy - colostomy bag is for your crap, basically, and takes it from high up the intestine so it's very watery. She ate normally during the time she had the bag, so no worries there. She was only operated on because they couldn't fathom out what it was for ages and then by the time they sussed it out it was a bit late to start on the drugs. She took the steroids and they just held off the inevitable to be honest. All worked out for the best and she's effectively been 'cured' by having that part of the gut taken out, but it could come back again on a different part so she still has to be careful about her diet.

Posted 2 years ago #
big-bad-one - Member

I heard that in the US they give people massive doses of vitamin B12 for Ulcerative Colitis and see very quick results so I bought biggest tablets I could find in Holland & Barrett and started to improve pretty quickly

Posted 2 years ago #

RSS feed for this topic

Topic Closed

This topic has been closed to new replies.

Singletrack Mountain Bike Magazine

Chat Forum

Has anyone or does anyone know anyone with Crohn's Disease?

Topic Closed

Don't miss…

Singletrack

Website & Forums

Exits