Please help, I feel like I’m going crazy! I am a 25 year old female and was diagnosed with Crohn’s disease just over a year ago, after conducting my own research and requesting the relevant tests. Straight away I was given a course of Prednisolone and then later, Azathioprine. Pred did help me at first, pretty much overnight, but as soon as I started reducing my dose my symptoms returned. And as I’m sure many of you will agree, the awful side effects are just not worth the hassle. They affected my confidence so much that I decided that living with the symptoms of Crohn’s would be far easier and actually less damaging.

So, I came off all my meds in September, although I was not in remission. Nine months later and I just feel as though I’m back to square one. I always have a positive outlook, but I have to admit, Crohn’s does stop me from doing a lot of things. Or, if I decide I’m still going to do something, it gets in the way and makes it less enjoyable.

I find the bloating so hard to deal with I can’t even explain how much it affects me. I never really hear of this affecting many people.…most seem to find going to the toilet 20 times a day and the pain the hardest symptoms to deal with. While I feel I can cope with those things, being painfully bloated 24/7 is what I find the most debilitating. It is stopping me from going on nights out, from wearing certain clothes, from letting men anywhere near me because I feel so disgusting, and it’s really getting me down. I’m also really worried about my holiday next month and how it will affect that. Of course I’m still going and will try my very best to not let it get in the way. But I know it will, and I have no control over it. It has a mind of its own and whether I eat or not, it will always make an appearance.

For those of you who also suffer with this kind of bloating, you will probably know what I’m talking about. It’s not like normal bloating, it actually feels as though my stomach’s going to explode, it’s so painful and the only thing to relieve the pain is to lie down. Standing up is really uncomfortable, and at times, I’ve been getting ready for a night out when the bloating worsens, and I’ve not been able to go ( It makes working really difficult as my job is a stand up one and it affects doing any kind of similar activity, as you can imagine.

I’m 25 and want to be out there having fun and maybe even meet a hot guy. I’m still determined that this will not beat me, and that I will find a way to get rid of it, but feel like I’m getting nowhere at the moment. Although I try my best not to, I feel like my life’s on hold. Life’s short enough as it is!

I've been researching the disease and the treatment available for the past year, and I just can’t see a way out. I’m never taking steroids again, as they made my situation 100 times worse. I feel other medication like Pentasa/Azathioprine only really work once in remission and are more maintenance drugs. The horror stories of Infliximab/Remicade really put me off, but I feel this may have to be something I will try in the future. And surgery doesn’t really solve much if the disease eventually returns, but again I don’t rule this out in the future. My Gastro pretty much agrees with my views.

I’m sorry for the big essay, but I would really love any advice, or to hear from anyone who may be in a similar situation.

Thanks for reading xxx

Hi there!

I don't think i suffer from bloating to the extent that you do, or at least not as often, but I know about the high dosage of prednisolone initially doing great things, though as the dosage decreases the symptoms return.  Can i ask what you had that you described as the awful side effects?

All i've had to date that i've noticed is acne in the form of big hard red lumps on my face and chest.  Really noticable and seem to never go down...  Also a slight 'dull' headache for the first week or two shortly after taking the tablets but that disappeared.  Is the Azathioprine another name for Imuran?  What was your experience of it?

I'm recently diagnosed so am only starting to appreciate all the options, treatments, possible diet changes etc that seem to be available, I don't fancy the surgery route much either, as from what i have read it makes a return more likely at the resection.  I hope i'm wrong in saying that???  As my consultant said it could work for months or years, its really just unknown.  

Its scary at such a young age like ourselves as if you have surgery now, it seems more likely you'll require it again and again-or thats my view.  Is there anything specifically that could help your bloating like small meals often, slowly ate, chewed really well etc, not using chewing gum?? I'm just throwing ideas around here, though i'm sure you've tried them.  Have a look at this to see if it helps: http://www.nacc.org.uk/downloads/factsheets/FAQbloating.pdf

Hope you get some sort of relief soon and keep your chin up!

Hi Nicola.I really feel for you young girls / guys,you are missing out on so
much,it must be dreadful.
Steroids are really there to help protect you,you should carry on with them
for your own good,and maintain protection from bowel cancer.

Its takes about 2 years to actually come to terms with this,and if you have good
friends who stand by you,you will feel less depressed,knowing you have support.

Hang in there Nicola.

Thanks for the replies guys.

Liverpool, the side effects I had from the pred were actually not as bad as alot of other people's I have read about...but were still enough to make me realise that steroids are not the answer. First of all my appetite went crazy, I wanted to eat constantly and was never full. Luckily, I was underweight due to being ill so the stone I put back on was fine, but it was very difficult to maintain my weight after that...however I did it as I never wish to be overweight. I had so much energy, which was great, but I felt euphoric and was constantly cleaning and arranging things, even in the middle of the night, I'd get up to move something that wasn't in its place. Lol. Because of this I couldn't sleep, my mind was constantly racing, I was always too hot, my eyes were blurry, I started to notice hair growing on the backs of my hands, which fair enough was only blonde, but still not nice. But the worst of the side effects for me was the moon face and the acne....and then my hair started to fall out.

I've always took pride in how I look and my whole face suddenly changed....I didn't recognise myself and I looked so disgusting I didn't even want to go outside the front door. But I had to as I was working full time and wanted to have as much of a social life as I could. Very hard to understand unless you've been in the situation I think. Probably sounds a bit vain, but it really started to panic me, I felt much worse than before I'd started the meds and I knew I had to come off them asap - I had no control over my body and it was turing into someone elses! Devastating. I've always been a confident person and this practically destroyed all the confidence I had left. Whilst that has now returned, I still can't look in the mirror and feel totally happy with what I see, and the pred is definitely to blame for this. My face didn't actually return to normal until I'd been off it for about 6 months.

As I wasn't in remission, the azathioprine (Imuran) had little effect on me...but as my hair was also falling out I came off this too as that is a known side effect. Although I still don't know what caused the hair loss....could be the crohn's, pred or aza...who knows! But that has still not returned to normal.

I can honestly say the medication I have been on has caused more problems than the crohn's itself, but I also know that us crohn's sufferers don't have a choice, it's either one or the other.

Everyone is different and it's definitely a case of finding the correct medication for you. Also everyone reacts differently to medication so one persons experience will almost always differ to the next persons. And you're right about the surgery, one person may benefit from it for years and another may only get months. It's a gamble.

No, nothing helps the bloating sadly....I think my body is producing a normal amount of gas, but it can't get out due to the narrowing of my small bowel. I can barely eat and I have meal supplement drinks known as the elemental diet. I eat small meals and drink my drinks to minimise symptoms. I try my best! Lol.

Have a look at this website everyone: http://www.ldnnow.co.uk A drug that treats many diseases including crohn's, with little known side effects. Problem is it's not licensed, so many GPs won't prescribe it, although legally they can. I will keep trying!  

xx

Hi guys, I'm 25 and a crohnie! I've had mild symptoms for years (about 10), rectal bleeding, boosting, weight loss, pain, and the worst of all anal skin tags!! I'm really lucky that I have an amazing fiance, but I really found the skin tags killed me. At Christmas time my bleeding doubled, and I was terribly tired. My GP said the blood was from the skin tag, which at the point was just put down as a fatty lump. I thought my other symptoms where just normal, because they had been around so long. On removal they found inflammatory crohns cells in the lump, and within 1 weeks they had grown back- big and more than ever. I had a horrendous infection, and took a long time to heal. After seeing my surgeon again, he suggested crohns, but I always thought people where really really sick/ill all the time.  After researching it I found all these 'normal things' wherent so normal.
I saw my gastro 2 weeks ago who was fantastic, confirmed crohns, and started me on prednisolne, pentasa, calchew. My skin tags have reduced in size, within a couple of days!! I really thought I was going to be cured!! I've been on my mess for 9 days now, I still get bloating, and I seem to be bleeding more, but the pain on going to the loo has gone (I used to cry when going).  I'm a very confident person and so far, touch wood, this hasn't changed. But I'm eating like a horse, I've put on 5lb, I'm still only 8 stone, but it is really showing!!! And fir the last 3 days I've had between 3/4 hours sleep each night! I'm not tired for the first time I can remember!!  Which is amazing, but being awake from 3am isn't fun!!
Now I'm writing essays, sorry!! I know I'm lucky- I could be alot worse!!  
In short I feel ur pain!! Xx

Hi Jemma,

Good luck on the meds! It's all trial and error, frustrating but I think we'll get there in the end http://crohns-disease.org.uk/forum/Smilies/smiley.png

Same as me...I've had symptoms for about 10 years and the docs always said it was IBS, but I knew it wasn't and that's why I figured it out for myself in the end!

Yeah I have a skin tag, which sometimes bleeds and stings but is ok most of the time. And I am always so tired, but I'm getting iron injections in a few months so hopefully that'll help. I've been anaemic for yeeears!

The appetite thing is horrible isn't it, mine was out of control! lol.

xx

It's the extremes that I'm finding hard, 12 hours sleep and I would still be tired, now 3 is enough!! Never being hungry, now eat anything in sight!! LOL oh the joys of crohns!!
I've stared to come off pred, from 40mg to 35mg! So I guess I'll see what happens!
Xx

Yeah I know what you mean, I wouldn't be able to sleep all night then I'd jump out of bed at 7am, wide awake ready to start work! It was crazy, and quite scary to think that medication can do that to you. From what I can remember, my appetite went back to normal pretty quickly as soon as I started reducing my dose. Thank god!

xx

So a few of you seem to suffer from real bad bloating, this thread on another forum may interest you:  http://www.crohnsforum.com/showthread.php?t=10382

Well guys im down to 10mg of pred and im still eating like billyo my god i could eat  loads not all at once though, i could just pick all day, crisps and chocolate biscuits, you know all the things that make us bad, lol but my body needs them as i crave for the sugar and sweetness, im determined to come of the steroids, i start pentasa tomorrow for the first time, not sure what they will bring, anybody help with that, ty tc xxxsuexxx

PS nicole hope you get sorted im like the others i start of the day feelin light and by the time i go to bed i look 6 months pregnant and thats everyday and i feel like it will burst, and tum rumbles and i suffer with terrible pains, the pain is worse when im bloated and doesnt subside until the morning which keeps me awake in the night, i also suffer with the runs all the time, although i must admit the steroids stop that to a certain degree, but once there stopped it all starts again. tc all xxxsuexxx

I take pentasa, and pred. But started them at the say time. I'm sure that my side effects r all due to the pred. Sorry I can't be any help!!  

Hi tattyteds, I  started on pentasa when first diagnosed and they did nothing.  I then moved on to steriods and have been on and off them (like the rest of us) ever since.  I am still on Pentasa but have no idea if it is doing anything.  I had no side effects when I started on Pentasa.  Hope this helps.  

i read this post with interest. i feel all of your pain lol. was only diagnosed a month ago. nicole im interested to see how i am when i come off prednisolone. i was started off on 30mg pred and 4000mg pentasa and the calichews. i am still on the calcium and pentasa but because my symptoms have improved so rapidly, literally in the last month, i am being weaned off the pred. i have read a few times that people have flared as soon as they come off and i really hope not. im down to 25mg and next week ill be on 20 and then so on down 5mg a week until i come off. i am worried that the pred almost 'masks' my symptoms almost. i was really ill before and i like you feel full of energy and active all the time now. first of all i thought it was just because i might be getting better but now im starting to think that it may be the pred. my side effects like yours dont seem to be as bad as some but ive only had it a month. i have noticed not too much weight gain, although i am massively underweight from the crohn's anyway. i have noticed the massive increase in appetite, no hair growth i dont think, my hands shake all the time, i sweat more than i used to and i dont have insomnia as such but do toss and turn all night. i also have recently noticed an outbreak in spots/acne mostly on my chin. i dont think i have moon face luckily although i already had rounded ish cheeks. but i can relate to you with the mass energy! what does anyone else think about weaning/ coming off pred also? dont worry though nicole. i am very similar to you and am only 22 am scared of the future x

Thanks for the link liverpool, the way she describes it is spot on!!

Sue, with regards to the bloating, I used to be more like that before I was diagnosed... when my crohn's wasn't as bad, but now it's permanent! However it's usually not as bad when I wake up, then gets worse throughout the day, so still a similar thing. Either way it's so uncomfortable and such a trivial thing if you think about it! If that symptom alone disappeared I know I'd feel alot better.

Hey Vicky, really pleased to hear the pred is working for you! It's very possible that it could put you into remission, so keep your fingers crossed. I noticed my symptoms returning pretty much as soon as I reduced my dose to 30, so for you it sounds promising. But don't worry too much, it's all trial and error. I didn't notice my face had gone puffy until I'd been on it for a few months! It takes a while to kick in, but even if you do get it, you're coming off the meds anyway so it'll probably be gone in no time. The acne I got was on my chin too, but that went really quickly...I just hated it, especially with the moon face! Not sexy. Lol.

Anyway keep us updated, would be interesting to know how you get on )

xx

P.S. That should have been a smiley face!