hello i am new to this site, but i was diagnozed with crohns when i was 19, was put on prednisoline and then azathioprine to control the symptoms, never really had much bother , until i was 40 had to be rushed into hospital with a blockage , due to a narrowing in my intestine which was not allowing food through, so i have a nice 6 inch scar up my stomach where my fantastic surgeon in Paisley royal infirmary scotland , cut me open and removed a damaged bit due to chrohns,  i have also had my gall bladder removed thru keyhole surgery a doddle compared to the other op.
now nearly 2 years since my op and i take loperamide, but still have stomach pains and wind and diar from time to time , but havent missed a day of work since returning from my post op sickness.

if anyone would like to talk about their situation , just write back , and we can discuss our illness and maybe put your worries or fears about this illness to bed for a while .

stu

Hi Stu I have had crohns disease for over ten years I have been very lucky so far and i have not needed any surgery. When i was first diagnosed i was given steroids which helped with the symptoms but made me feel bad with the usual side effects, I decided to stop taking them nine years ago. We started to figure out what agrivated the symptoms when a work mate told me every time i had chocklate or a milk shake within ten minutes i would keel over in pain. So i stoped eating choclate and milk shakes which made a great deal of difference. Every year or two i do get tempted and within a few hours i start to get the pain and the other symptoms back again. I know everyone is different and this probably only works for me and sounds like the exact opposite of what i should do but when the symptoms start i drink two or three pints of cider and within a few hours i am back to normal. I can only think that the acid in the cider must kill the bacteria in my stomach (i dont drink beer or lager because of the yeast that also starts it off again) I have never spoken on a forum before and reading how some people are suffering I feel guilty about writting this and how i have been so lucky. i am only writting this with the hope it may help somone else even if only a bit. I feel that after ten years of having crohns it cant be just luck there must be something to it. When i was first diagnosed the doctors told me i had abnormal cells everywhere they had tested. I am a self employed roofer and i am over fourteen stone which i am battling to get under i have lost very little time over the years through crohns. I do take aloe vera every morning but i have not had any other medication for all these years. Do you know of any other people who have been able to manage the disease and be as fortunate as i have been. I hope this may help someone, speak again soon Tony

Hi Tony, thanks for replying,  glad you have not had too many problems with your crohns, i really dont know if getting my gall bladder out is causing me to have diar or the crohns, but i agree that chocolate aggravates mine and full cream milk is a no no too,  i still have a nearly normal life and i am shocked at some of the stories from some people on this forum, its a horrible disease that seems to affect everyone who has it differently.
where i had my operation to remove a blockage due to crohns, the doctor says its very rare that it comes back in that place again, hopefully he knows what he is talking about , as the surgery was a aggresive and i stayed in hospital fr a week after it, not a thing i would want to do again.
I hope yours stays dormant and you don't get too much bother good luck and thanks for talking.

stu

Hi Nicole.  Wow. someone else with the same symptom as me!!  I too suffer from incredible bloating.  There are nights where I look nine months pregnant! It's horrible and uncomfortable and it really is affecting my life. I'm sure it's the cause of me being SO tired ALL the time! I had my second bowel resection in March and I thought that maybe that would be the end of my bloating, but after about 6 weeks of feeling like I actually have a flat tummy, I'm back in my jogging bottoms because they're all that fit me.  I fluctuate 2 trouser sizes with my bloating.  My dr doesn't seem that interested in the bloating and hasn't really offered me any solutions.  

I also am an overweight 'chronie' which it seems is unusual for someone with crohn's.  When I was first diagnosed (back in 1988 when I was 15) I was incredibly underweight and besides putting on the usual steroid weight when I had a flare up, i remained quite slim.  But about 2/3 years ago I started getting alternating constipation and diarrhoea.  I could go 1 -2 week without going to toilet (the record was over 3 weeks without going to loo!). Slowly I've started gaining weight.  I'm not hugely overweight, just uncomfortable and definetly not me!  I'm quite a fit and healthy person normally. It's weird how my Crohn's has changed over the years.  I used to get terrible pain, diarrhoea, vomiting and weight loss and now I seem to get terrible pain, constipation, extreme fatigue and weight gain.  What a weird disease!!  

Hey Jennifer,

It's horrible isn't it =o( It's so painful and uncomfortable and there's no way to get rid of it. I know what you mean about looking pregnant, it's the same shape an everything lol. I just put mine down to the fact that the normal air that is produced can't escape due to my narrowed small bowel. So the only way to sort it is to reduce the inflammation...something I'm finding really difficult to do without using steroids.

How have your ops been? Are you glad to have had them done? I'm really interested in speaking to someone who's actually been through it all. I can get away with not having surgery at the mo, but maybe not in the future. I'm just so scared of waking up and finding that they've had to attach a bag to me...even temporarily it's not something I could do, it would make me sick.

Three weeks without going the toilet must have been agony - one day for me and I'm going mad!! It's too uncomfortable. I too am always extremely tired and drained. I'm anaemic and should be getting iron injections in a couple of months, I hope so much that they help. My iron's been low for at least 10 years, it would be nice to feel a bit more 'normal' again.

x

Hey.

I AM happy I had op. I think I hadn't been well for a long time (but chose to ignore symptoms) when I finally ended up in casualty having collapsed at work.  I spent nearly a month in hospital while they tried to get crohn's under control.  I had xrays and ultrasounds which showed my small intestine was riddled with Crohn's.  I was on IV steroids and they started me on infliximab.  These worked and cleared up all active crohn's but I was left with two strictures about 10 cm apart in my upper small intestine (my first op in 1988 i had bottom 12 inches of small bowel/first part colon removed) which is appearently a more unusual place to have crohn's. I ended going private for op only because I was going to have to wait three months to even SEE a surgeon (luckily we have private health ins through my husbands work).  Surgery this time around was easier than first time.  They did it by laproscopic so i only had two small incisions and one about 4 inches through belly button.  I ended up in ICU for 1 day due to pain (it was pretty bad!!) and was in hosptal for 6 nights.  I got an infection which delayed the healing by about a week, but since then, scar/operation site is fine. I'm completely off steroids now which is Fab!! and have stopped infliximab.  I'm just on azathioprine. The pain is gone!! so yes, op was worth it. I'm just really fed up I still don't feel 100%.  I had about 2 weeks (since op in march) when I felt great.  But last 2 weeks I'm feeling unwell.  I can't quite explain it, but I feel generally unwell, sort of flu like.  My joints are also aching, in particular my left knee and fingers. And I am SOOO TIRED..all of the time! I'm wondering if it is azathioprine? And, after all that, I'm still off/on constipated.  Def not as bad, but not what i'd call 'normal'.  Beginning to wonder if I'll ever be normal!!!

Oh, by the way, before surgery I was told there was a good chance I'd end up with a stoma. And I felt EXACTLY the same as you...it would have been my worst nightmare!! But nope! I'm lucky I've never had to have one.  

Wow it sounds like you really have had a tough time! Strange how you started feeling ill again so soon after surgery, I wouldn't have thought symptoms could return so quickly. Maybe you feel like that due to the amount of stress your body's been under and you might have some deficiencies....just a thought. I think we forget the effects this disease has on our bodies...sometimes I feel about 80 and I think it's just by body's way of telling me to rest! Scary. I'm not sure about the aza side effects...I was on pred at the same time so to be honest I didn't have a clue what was causing what! Lol. But I'm sure it can cause tiredness. It's probably just a mixture of everything.

What was your experience of infliximab like? I'm beginning to think it may be my only option now, but the horror stories & possible side effects put me off. Have you heard of LDN? Have a look http://www.ldnnow.co.uk

x

I've vowed never to take Pred again after i started shaking so much that i just couldn't function.  There is another steroid called Budesonide which is more expensive and less available than Pred - It doesn't work for everyone but it got me through Christmas!  I got the impression from my pharmacist that it isn't prescribed very often - but it is definitely worth a discussion with your doctor/consultant.  Good luck!

Hi there,

My gastro gave me a prescription for budesonide last week! But the side effects are the same as pred so I really don't want to risk it.....if my face puffs up again or I get acne I'd be in a really difficult situation bcos as with pred, you can't just stop taking it. And those side effects don't just disappear when you stop the meds, last time they took a while to go. So, I decided against that! I think it's just steroids as a whole...they all have the same side effects. Maybe some more extreme than others though.

x

Hi

I completely understand what your going through.  I have a bad bloating problem.  I have actually been asked by people if i am pregnant which has started to affect what i wear and going out with my friends has just stopped.  I get up in the morning and feel ok but my afternoon its pretty much bloated back up to a 6 month pregnancy bump.  I do have narrowing of the small bowel and due for mri scan on 3 june.  I don't know if i will be getting surgery or not but i do know that the constant bloating is just horrible and soul distroying.

I know how you feel about the steroids, i was put on them when i was 13 and school was a nightmare, i got bullied bad for it. I put on so much weight...i genuinely looked like a hamster with bad acne. Im the same as you, i wont go on them now, the doctors tried to push me to do so again, but i refused. If i went on them again id become a recluse, theres no way id go out like that again. I also have problems with bloatedness and sometimes it can be sooo painful, i tend to find that mines is caused by what ive eaten though. I know to stay away from certain foods. Im now on methotrexate and although its a pain because they react with a lot of other medications(just means i cant take certain antibiotics), theyve worked wonders with me. I only take it once a week, and a folic acid tablet the day after, and thats me fine apart from the occasional stomach pains but nothing major Hope things get sorted for you xxxx

It's horrible isn't it Bo, it's amazing how much of an effect it has! Hope your scan went ok, I'm sure they'll figure something out for you, just keep trying different things like I plan to.

Charmed, I feel exactly the same, I think I'd become a recluse & have even less of a life if I went back on steroids! Infact I know I would. So did the methotrexate put you into remission then? I was thinking about trying that but wasn't sure it'd be any good. First of all though, I'm coming off the contraceptive pill that I've been on for 10 years. I've read soo much about how it worsens symptoms of crohn's and how some people have gone into remission when they've stopped taking it. Not sure if it'll work but very keen to try! Then I'm going to ask for LDN again, & then methotrexate. It's so time consuming!

xx