hi everyone!

Where Do I Start?!

Am newly diagnosed in March 2010 just joined this site to help me understand more about IBD and how to cope with it.

I am 22 and since Oct 2008 i started getting slight cramps in my stomach but wasn't too alarmed by it until May 2009 they started getting really bad everyday i was experiencing these stomach pains and nausea.  Throughout this time i was starting to gradually lose weight, fatigue and cramps.  I would go to doctors every week at one point complaining about the pain.  I was told so many different things was wrong.  Depressed, gallbladder and stomach ulcer. In Sept 2009 i started being sick.  I don't have a problem with diarrhia, i have 1 maybe 2 bowel movements a day, they look normal! My symptoms were cramps, nausea, vomitting and fatigue.  He booked me in for a endoscopy.  Was told its probably stomach ulcer and was given tablets.  From Sept 2009 i waited and waited for appointment with my symptoms getting worse i was admitted in January 2010 were they did the endoscope and results came back fine.  I went home scared and angry! What was wrong with me i started to think it was in my head.  I was put for a White Cell Scan in Febuary 2010 which revealed inflammination of the small bowel.  I phoned everyday for my results and they said that they would send out an appointment because they need to discuss my results with me.  Still not having a clue what inflammination of small bowel was and symptoms still getting worse.  I was then admitted into hospital in March, and the doctors put me for barium meal, x-rays and colonosopy.  I was then moved to the gastro ward and told it was Crohns Disease!  I had no idea what it was, never heard of it before and have no family members with any IBD.  I was put on IV steriods for 7 days and then put on 40mg steriods (Predinsone) and azathioprine 100mg.  I was told that i have Crohns Disease of the small bowel and have narrowing which may lead to operation between 6 month to a year.  I have to go for a mri small bowel scan in June.  I am left confused, angry with the doctors and have no idea what the future holds for me.  My consultant has been understanding and the IBD nurse at the hospital.  Since 31 March i have got as far as 30mg steriods a day and been put back up to 40mg twice due to symptoms returning.  The blood tests for the azathioprine have been all fine, and have no bad side effects (Fingers crossed i don't get any) but they said it takes 3 month for aza to work until that does the steriods will help with the inflammination.  Just can't seem to get past 30mg steriods and end up getting sore again.  I still get stomach cramps everyday but nothing compared to what they were before i started taking the steriods.  I also have loud growling noises from my stomach, when it rumbles i can feel it.  ( if that makes any sense)

In  the past 2 years i have been studying Business Admin and have just did my exam last friday.  I have missed alot of my course throughout the last year but went ahead with the exam, the teacher knows but haven't told anyone else i just don't know how to explain it.  The other problem i have is that looking up on the internet about crohns disease all the symptoms are the same but haven't come across anyone with my kind of symptoms of nausea, vomitting, stomach pains, fatigue, weight loss and anemia.  I don't have any diarhia but do sometimes feel the urge that i need to go but nothing happens.  When i do a bowel movements i feel a weird empty feeling and sometimes my stomach pains get worse for up to a hour after the passing of stool.

Thanks for reading my story and would be grateful if anyone has any symptoms like mine can help me understand more about it.

x

Hi Bo22,  

I've been dropping in for the last while reading the forum but your post made me sign up to reply because it was like looking in a mirror!  I've only been diagnosed this year too (23yr old) and in exactly the same way as yourself about 5 or 6 years ago i started getting the slight pain in the stomach which I ignored and as it got worse only gradually, I didn't take much notice for a while.

As it got worse and more 'crippling' to the extent where you needed to double over or lie down to get rid of it.  I didn't really lose weight, but i certainly gained none no matter how much i ate and i was getting more and more tired.  I started treatment for IBS, which worked for a week or two then became ineffective and so a new treatment and the process continued till i started losing faith that i would ever be 'normal'.  Regarding the tiredness, you no doubt have low iron level and stores like myself, which will cause your lack of energy and anemia.  

It took about 3 years before i became sick with it, and it came about via excess saliva in my mouth which when swallowed made me vomit.  Its happened a few times since and I have now found out that this is very likely caused by a partial obstruction, and luckily it ends up clearing itself.  

Also sometimes i get very shaky and shivery to the point where it hurts my muscles and this again seems to be linked into the same sort of problem.

I had the endoscopy, colonoscopy and barium meal and a scan and it revealed two strictures (narrowings) in my small bowel, so i can fully empathise with you.  Another thing is that I don't suffer from diarrhea either, which always seems to be the big tell tale symptom.  For that reason i almost feel a bit of a fraud!  But i am very grateful as it must be truly awful for those who suffer in this way.

I started on asacol (had no effect at all) and am on prednisolone and pentasa and like yourself noticed an improvement, but as i lessen the doseage of steroids i feel the stomach pains coming back and the noises are definately returning, especially in the middle of the night.  I know exactly what you mean about 'feeling' the noises, its like you guts vibrating and rumbling around inside your body.  I don't know about you but with me, its not 'sore' but just extremely weird, unnatural and disconcerting so it feels very uncomfortable, as well of course as being embarrassing when others are around.  Not too sure on the accuracies but i've read that the gurgles and noises are from food etc being held back by the narrowing and then finally getting through, causing the noises.  I suppose it sort of sounds sensible!

I too am at uni and am going into final year this september, which worries me slightly as now that i'm starting on all these new treatments etc, I have no way of telling if its going to have me full of energy raring to go, or if i'll get knocked for six with bad side effects etc.  Its good you've made your teacher aware, I too know its difficult to tell others, initially i never discussed any of my problems through embarrassment, now i've started to accept it a bit more by reading these sorts of forums and realising i'm not the only one with these issues, but i still do feel that people don't really realise what its like.  They think you sort of look ok, you're not in hospital, so apart from a bit of a dodgy stomach, whats the big deal?  Also i worry that if i keep having to remind them that I'll appear as a hypocondriac or a moaner etc.  

I hope all goes well in your exams and you can soon get some relief from your symptoms.  As you suffer from most of the problems i have too, do you have any joint pain/stiffness?  I have stiff ankles which i have to keep moving and they crack etc, its been put down to Crohns too.  

Hi

Its surprising how common this disease is until you actually start talking to people.  I am 39 and had crohns for 7 years, after trying steroids, methotrexate, am currently on aziathioprine and asacol.  Had a colonoscopy yesterday (god that hurt!!!) and looks like I am going to start Imfliximab, some kind of intravenous drug.  Dont know if anyone has tried it with good results or not??

You are right, it does make your ankles sore and I often get cramping in my calves.  I have just started having raeki (dont know if thats spelt right) and reflexology as an alternative to see if that works.

It is difficult to make people understand what you are going through as, like you say, on the outside you look perfectly ok.

On my really bad days I try and laugh about and, when I drag myself into work, I tell them I may be the only nearly 40 year old who still wears nappy rash cream but this disease is not going to beat me!!!

Try and keep smiling, it is difficult at times I know.....and good luck!!

Its such a relief to read someones experiencing the same as myself.  Both physically and mentally by the sound of your comment.  I know one day am fine and the next day am ill.  Everyday is different and my friends are great but haven't really got much of a social life anymore because of being ill.  My partner has been great too but he just doesn't realise how bad i feel sometimes i just feel so tired and exhausted (its affecting the physical side of the relationship) maybe that was too much info.  Now am getting all anxious and thinking he's going to leave me for a fit healthy 22 year old with no problems.

I wake up and just think please don't have a sore belly today!  It just takes over your whole life people just think its a upset stomach.
Before i got diagnosed i had days where my joints like my wrist in particular was sore and could hardly lift a kettle on a bad day and then when i got diagnosed and started taking steriods its disappeared still get the odd ache and pain and when i first started my tablets i remember one day my legs ached so badly i looked like a old women.

Sometimes in the morning i would describe my belly as feeling as if i have been doing sit ups all night. Does that make any sense?!

Have you ever had a mri small bowel scan? getting little anxious about this what is the scan going to show?  Is it the narrowing that the scan will be revealing so they can determine how long before i need surgery??

xx

Regarding the social life bit I totally understand, I know when i was 1st year at uni and my friends wanted to head out and yet so often i just was happy to have made it through the days lectures and looked forward to just flopping out on my bed for the evening!  It probably is hard for your boyfriend to understand fully, because if we all didn't have this disease we would probably struggle to comprehend what it is like too, thats the way i look at it.  I can see how it is difficult for you both as you struggle to control the symptoms but as you say "he has been great", so why will things change?  He has been with you through arguably the worst period where you the crohns was doing whatever it wanted to and you had no idea what was causing it etc, so now you have a diagnosis and are on treatment at least you can look forward to getting control of things.

There is no point in worrying though, stress isn't something you need what with the illness & exams/uni etc.  I know its easier said than done!  

Don't think it was an mri scan i had (unless it was a mini one-it wasn't one where you go inside a big cylindrical scanner), it was a thing that moved around on an arm across my gut and took images and at different angles and pressed down at certain points too.  It was fine to go through.  I think it shows the strictures in 3d instead of 2d like an x-ray, so i suppose it gives them a better idea, so it might indicate the need or hopefully no need for surgery.

Milly - now you say it i used to be plagued for a while a few years back with really sore/tired feeling calves and was constantly stretching them to try and get that odd relief through the pain of stretching them if you know what i mean? lol.

Also let me know how the reiki thing goes, i think they offer it at my uni and would like to hear what you think of it.  

Hi LFC - will do, just had my first reiki session yesterday so will keep you posted.  Feeling very sore today, feel like my ribs, neck, everywhere have taken a beating - dont know if its from the gas and air I had with the colonoscopy. Been up since gone 5am as cant sleep its that uncomfortable, our poor dog will be walked off her feet!!

Bo - Im sure you will both be fine, I have been married for 9 years and sometimes I think you do start to wonder how much longer they will hang in there for...but they do!  I think at times like these you realise what a great support your family and friends are, even my children accept that when mum is having a bad day we cant always get out and do things.  I also look at a daughter of a great friend of mine...she was diagnosed with crohns when she was 11 and is now 23.  The final outcome for her was having a colostomy bag fitted and she has never looked back.  Her syptoms have gone, she has got so much more confidence, has a partner who adores her and is constantly out with friends.  She admits that initially the thought of it horrified her and cancelled her operation first time round.  Sometimes I wonder if I am heading the same way and my husband says 'so what? its about your quality of life'.  And hes right.  You will be fine.  You do have to take each day as it comes and like you I wake up thinking 'is it gonna be a good day' and when it is thats a blessing.  It will get better.

Thank you for ur replys.  Its early days and i am going to try and stay positive (easier said than done sometimes) but if i start getting depressed it'll make things hundred times worse.  I am still at the "Why me" stage but hopefully that'll pass with time and reading these forum's is helping so much i am glad i have finally joined.  You all are a big help, people try to understand which is nice but actually being able to relate to people who are in the same situation as you does boost your spirits.

What is reiki? never heard of this before.

xx

Hi Bo

Its very strange, its a form of healing.  The lady I had puts her hands on you from your head downwards and all you can feel is heat which is literally coming from her hands - it apparently gets all your energy in the right places and balances your shakras (not sure what they are tho?!!) At times she wasnt even touching me and I could feel the heat in my body.  I had never met her before and told her nothing of my condition yet she knew I had abdominal problems, pains in my calves and headaches.  I dont know if it will help at all but at this stage I am prepared to try anything.

Does it cost alot for reiki?  It sounds nice, i wouldn't mind trying it. x

I was told years ago to go to the dr after id had a reiki session, she said she was drawn to my tummy when she didnt want to go there, i went to the dr, and i was told i would need to have a hysterectomy urgently,  they found a tumor,  thankfully it was benign, so thanks to reiki im ok. i havnt had the bottle to  have another session though lol tc xxxsuexxx

thats scary! I couldn't blame you for not having the bottle to go back. So is the women a pychic or is it not that kind of thing?  Its very weird that she could pick up that from just being stood next to your body.  x

Hi Bo22, just catching up on everyones posts.  I recently had small bowel mri which gave a clearer picture of what was already suspected.  I was diagnosed with Crohns a year ago and have been on and off steriods since.  Every time I taper down the symptoms come back and late least year I was admitted with a bowel obstruction and back on steriods again.  My mir showed strictures and active Crohns which makes surgery for the strictures tricky (too many of each I think).  I am already taking immunosupressants and waiting to start on Infleximab.  So for now its low fibre and small meals so allow everything through, it doesn't stop the awful noises and pain as it moves though.  Hope you don't have to wait for the mri too long and get some answers.

new member here and newly diagnosed also, 14th april. i like you, bo and liverpool, can relate so much to your stories. i felt like so much was going wrong all the time but i was relieved when i found out what was wrong because i knew then that i wasnt going mad. i had the pains and problems for months but sadly i had the diarrhea that was one of the first things i noticed back in september last year. diarrhea up to 20 times a day and getting up in the night. the abdominal pain wasnt as bad until i went to see my gp in october and got referred to a gastroenterologist. didnt get to see one until january this year and by then things were getting worse. was meant to have a sigmoidoscopy in february but i got a bit upset on the day, probably because of the pain and the enema which meant they said i was in no fit state for them to carry out the procedure. they thought they knew what it was anyway, a kind of bacterial infection in the stomach which could be cleared up easily. after blood and stool samples though there was nothing and i finally had the sigmoidoscopy at the end of march. they saw the ulcers straight away and said i probably had colitis. although they took some biopsies and 2 weeks later diagnosed crohns not colitis. naturally i was pretty gutted and still have awful days. scared of the future mostly. but yes, the symptoms you describe are all too similar to mine. the tiredness, the vomiting only started in the weeks before my diagnosis though and the diarrhea is one thing that i struggled with so so much. am on prednisolone now and pentasa and am gettting better but yeh hang in there, you are not alone. i am also young, 22, and am just finishing a post grad course so am grateful my undergrad years were gone before this awful time. good luck to you all xx