I may have crohn's disease, scared :( Watch

Anonymous #1
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Report Thread starter 8 years ago
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I've been having digestive problems for the past year now. I tried to ignore them hoping they would go away on their own but they didn't.

Now I've been to the doctors and I have had some blood tests and the results have come back as saying I have inflammation markers. I have all the symptoms of crohn's too. I am going for a colonoscopy soon (really worried about that too) to confirm but the doctor seems quite certain it's crohn's.

I'm in my first year at university and it's basically been ruined. I can't go out, I can't do anything. And maybe this is just the start. If I do have crohn's I'm going to have to deal with this for the rest of my life. I'm not going to be able to do any of the things I've wanted to do, like travel in case I get ill. I'm in pain constantly and a lot of days find it difficult to leave the flat and from what I've read about other sufferers this is nothing compared to what it could be. And then there's the vastly increased chance of colon cancer.

On top of that I'd have to start horrible medications with horrible side effects. I'm just so scared and angry and sad. I've been crying all night, why did this happen to me? I'm still so young.

And on top of that I don't feel that I can tell anyone because it's so embarrassing. I don't think I could bring myself to tell my boyfriend. I haven't even told my parents yet, when I told them I was having digestive problems they just laughed at me but this would probably worry them. I'm just feeling so down. I'm not a strong person. I don't think I can cope with this
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Arya
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Please confide in your parents or someone, you need support at this juncture in your life. My cousin and uncle both have chrons , and my cousin (your age) has leaned to cope very well with it and lives a normal lifestyle. My thoughts are with you and stay strong. Any time you need to chat just pm me but like i said tell your family and those that are close to you.
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NatalieMT
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I've had Crohn's a few years now and really although I can understand all your fears in reality eventually you do finds ways to get through and overcome all the obstacles Crohn's creates. I'm not by any means saying it's going to be easy but there is certainly a quality of life available to you even after diagnosis.

I've had 3 colonoscopies so far, the first 2 were under general because I was in the hospital and too sick at the time to tolerate anything else, but the 3rd I was awake - can remember everything, really it wasn't all that bad. I honestly wouldn't worry too much. The likelihood is you will be given sedation and pain relief and you afterwards you won't even know what happened.

I didn't go to University because it didn't seem a good idea at the time to move far away from home and the hospital I use. But I've been in work for the past 3 months and I'm doing okay, have a holiday planned in a few months time so I'm still doing things I enjoy. When you get your symptoms under control there is no reason why you shouldn't also be able to enjoy everything you did previously. I still take painkillers, I haven't had a day where I haven't taken painkillers for over 2 years now but I'm comfortable at present.

In terms of colon cancer, 90% of people with IBD never develop cancer. Yes there is an increased risk but it's still small. The risk is usually greatest 10+ years after diagnosis and if the entire colon is involved. At this stage again I certainly wouldn't get overly worried about the risks involved. The most effective measures you can take are attending all doctors appointments, keeping your situation in check and adopting a healthy lifestyle.

The medication toxicity is something to be aware of. It's likely you will be started on steroids to dampen down any initial flare. I've taken both Prednisolone and Entocort extensively and really got little side effects apart from a slightly puffy face. I'm on Entocort (plus Infliximab and other things) at the moment and I'm not suffering from anything unwanted. Long term medication really depends on the severity of your disease, but they're not all that bad. Crohn's medication is constantly advancing too, so in 5 years time who knows what will be out there that is even better. All that being said I've never been asked to take anything I wasn't happy to take and I don't think the medications I'm on would have been suggested to me if the benefits didn't outweigh the potential risks. The consultant you see I'm sure will explain everything thoroughly.

I'd probably tell your boyfriend/family what is going on for you at the moment. They will probably surprise you in that they are very supportive. My Mum comes to quite a few of my appointments with me and has been a great help. I can also link you to a Crohn's support forum, it's a really nice forum with lots of friendly members who I'm sure will be happy to listen to your fears and answer any questions you have.
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~Viola~
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3 of my friends at my drama club have Crohn's. They have learnt how to look after themselves and appear to live very 'normal' lives. They have learnt to cope and seem very happy. You can learn to cope and ten live happily, judt don't bottle up your worries.
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hannah_dru
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My sister has Chrohns and both myself and my mum have IBS. I'm sure you'll still be able to do the things you want to do, you just have to take the time to adjust to it so that you can live a normal life. My sister takes medication and manages to lead a normal life perfectly well as do myself and my mum (I know IBS is different but still...). The good thing is that you don't know you have it yet, it's just a possibility.

Please don't feel embarrassed about telling people, it's nothing to be ashamed of. You shouldn't be laughed at or anything.
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Beth292
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Please don't be scared, I have crohns disease myself, and I intend to go to unviersity in september. There will probably be a lot of people in your university suffering from a similar condition, and I have faith in your doctors thar once your medication kicks in, the pain will ease and leaving the flat will become easier, I promise!

It can take time for drugs they give you to enter your system, so you may find a variety of ways you have to take medication, but I wouldn't worry about the future, travel can be just as easy with medication to control it, once you're in remission (which can last years!) and its only the jabs to go far abroad you will have problems with, if they are live but GPs often have lots of experience with this sort of thing.

Side effects from medication can vary, but you learn to deal with them in a different way. Some can be just increased sensitivity to the sun, and a little larger appetite, which will help you out with crohns because you do lose it when you get ill, but people easily adjust and this little crohnie group will help you out, you can PM me if you have any questions I've been diagnosed 5 years now and have tried most of the drugs going, and can help you with any questions.

And I do explain, but not in full detail, you can PM me if you want support telling people because I can explain how I describe it, and the Doctor or a national group called the NACC can provide leaflets to give to your parents explaining the condition in a realistic and sensible manner, and they are very supportive so its definately worth getting in touch with them, even for information yourself.

I have a long term boyfriend who understands about my condition, and although he doesn't know the full ins and outs of my symptoms, he understands when he needs to rub my stomach and when to bring me food I like to boost my appetite, and understands when I need to sleep lots cos i have no energy!

I know you'll be strong enough, there's lots of people here who will support you, myself included, and will be on hand to offer support and advice whenever you need it! Sometimes you need a friend who understands to share the stress xxx
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Electric Indigo
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I have just been diagnosed with it and I'm just about to do my as-level exams. I feel the same as you 2. I have been in contant pain every second for a whole year just as I was looking forward to life...
I was really happy before but I feel my life is over now because nothing will be the same again. I hate being in so much pain;'( don't feel too bad, you're not the only one who has to go through this. I haven't actually expressed this before but I'm scared and hoping I at least get a quick death soon.
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Phelps
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Dont fret I have crohns and yes, its a horrible condition depending on the severity. I myself have had it pretty bad, needed surgery and such and as a consequence i now have an ileostomy. I got it when i was 13 and i had to have a colonoscopy too. (Dont worry, its over in a few minutes and its not painful.)

Dont forget, you've not even been officially diagnosed and you havent had any medication. You never know, a change of diet and a couple of tablets everyday might suit you and you'll be dandy! As for not being able to travel, when its under control of course you can travel, it wont take long to figure out what medication does/doesnt work for you and hopefully things will be a lot better.

Most of the medications us crohnies take only have side effects if your allergic to them so dont worry! Well unless you start on steroids, yes the dreaded steroids. They make you go a tad like a beast - make you put on weight/increased hairiness. Although, your not supposed to be on steroids for very long so it will only be temporary. Plus, if it makes you feel better then who in hell gives a damn.

Honestly, its really not that embarrassing. Its a medical condition, they'll get over it. (Try having an ileostomy, thats embarrassing.) About the parent situation, its quite disheartening when they dont believe you. Before i had my surgery a couple of months back, my rents always thought i was faking being in pain so i didnt have to do chores, turns out i wasnt and now they feel guilty as hell. That feeling will come to your parents soon enough.

I feel your pain (literally) and i hope you get well soon! *hugs

Just think, there’s always someone worse off than ourselves.
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Liar
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(Original post by Phelps)
Dont fret I have crohns and yes, its a horrible condition depending on the severity. I myself have had it pretty bad, needed surgery and such and as a consequence i now have an ileostomy. I got it when i was 13 and i had to have a colonoscopy too. (Dont worry, its over in a few minutes and its not painful.)
Hi I have UC and it looks like i'll be needing surgery soon as i've tried all the available meds but none (except steroids) work for me. I was just wondering if you could tell me what the biggest challenges of living with an ileostomy are? I'm a bit scared tbh, but i'm hoping it's something you adapt quickly too? Can i ask why it wasn't converted to a j-pouch, as this is something i'm hoping will be a possibility for me. Feel free to PM if you don't wanna reply on here. Thanks

And to the OP, i really feel for you. My first year's been ruined too Don't worry about the side effects, the worst most people seem to get is some weight gain and a puffy face but you'll be feeling so much better on the steroids you won't even care xx
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crazyunicorn133
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I'm 21 and have just been diagnosed with ulcerative colitis, which is a form of crohn's. I'm coming to terms with it too.
It's really not stopping me from doing anything i don't normally do, except working really as my condition flares up badly in the early mornings. I'm working on adapting this to a later shift.
The medications aren't as bad as i thought, same as anything really, you have to let your body adjust. One of the good things about this condition is that once you have gotten over the initial shock and have learnt how best to deal with it yourself, then in periods of 'remission' you are completely normal and fine, and it's only when you have a flare up that things go bad, but it's for a much less amount of time.
This is what i've been told by my dad, who's had crohns since he was 25.
If you want to chat feel free to PM me, coz i think we're going through the same things. I only had my colonoscopy / sigmoidoscopy to confirm my diagnosis about 1 month ago, and i've also had ultrasounds and barium tests also.
I get to have another on 22nd June. Fun times :rolleyes:


Edit: I use this other forum too, i found it really helpful in the first week or so of being diagnosed, helped me to feel like i wasn't alone in this - http://crohns-disease.org.uk/forum/
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mollymustard
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I'm not going to pretend I know anything about Crohn's - I really don't but I have seen a friend of mine who really has such a normal life with it, I didn't even know there was anything up until I knew her properly.
She's gone to Uni, has the best social life ever, and just gets on with things pretty normally. So don't think that it is going to ruin everything, it will be difficult but its possible to get through.

You don't need to be embarrassed about this, its a condition that people have great understanding for. I certainly can't see why people would judge you for it. Is it just because its digestive related?
Don't go through this alone, you need to have someone to talk to and go through this with you. Your parents would probably be desvastated if they thought you couldn't confide in them and were feeling upset. Your going to have to tell them about it somehow so try and start talking now.
Maybe writing it down and giving it to them as a letter would be a good starting point, it might help you think things through logically too.

Hope things go okay
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Casinomaster
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Hi,

I echo the advice that has gone before. This is still in the early stages of diagnoses and everything might still work out dandy. Of course it might not but the best advice I can give you is to confide in those who love you. The more you bottle up your anxiety and worry the more difficult it will become for you.

It will feel like a massive weight off your shoulders and never underestimate the helping effect your parents can have in difficult times.

Just remember you're not alone and there are lots of other sources of support and advice.

All the best
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Phelps
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(Original post by Liar)
Hi I have UC and it looks like i'll be needing surgery soon as i've tried all the available meds but none (except steroids) work for me. I was just wondering if you could tell me what the biggest challenges of living with an ileostomy are? I'm a bit scared tbh, but i'm hoping it's something you adapt quickly too? Can i ask why it wasn't converted to a j-pouch, as this is something i'm hoping will be a possibility for me. Feel free to PM if you don't wanna reply on here. Thanks
Hi Well, the biggest challenge for me was coming to terms that i've actually got my arse hanging out of my stomach, ha I adapted to it quite well, i think i was just so relieved/happy that i wasn't in pain anymore. :yes:
Yes, i do have days when it upsets me, thats only because i cant wear things that i would normally have done due to the bag hanging out or when i'm crying because i had to get up in the night to empty it when i just want to sleep (I ***** when im real tired)
Appart from those things, i am grateful for it. I am no longer in pain and i can live my life again!

With you having UC, that just affects your colon right? If you take the colon away, your pretty much cured. :cool: Well with Crohns it can affect anywhere from your mouth to your anus, so if i had a pouch and it re-ocurred, it could be life threatening and such.

Hope i've helped, if you want anymore help/just want to talk feel free to PM me. *hugs x
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planetconwy1
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I have Crohns. Ive had it since 2007 and its really not that bad. I take meds every day but i barely get any pain or discomfort.
I go through times when i cant eat very much, but most of the time i can i just stay away from heavy dairy products like cream. I do plan to go to Uni to do Medicine but am a bit worried about all the pressures which cause flare ups for me :/

You could say my case is mild but most of the time i just try to forget i have it and it dosnt bother me too much, the worry of cancer in the future does though

Also it seems to affect Girls more than Boys :p: thats just what ive noticed from people i know lol
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