Hello Everyone

Hi to one and all!
I found your site a couple of weeks ago and it has been a revelation! So thank you
I have had problems with my bowels all my adult life. This has mainly been d that has just happened out of the blue at least once a month But I have now been ill and off work for 6 months now. My GP and GI both suspect it is Crohn's but I dont have a diagnosis as yet. I have had a variety of test including a colonoscopy and biopsies but these have all come back negative except the inflammation level in my blood, which is raised. Tomorrow I am having a CT scan and I hope that this will give me a diagnosis as I am very frustrated at not knowing what I am dealing with (having read various posts I understand that many of you have taken a long time to get a conclusive diagnosis so I hope you can empatise).
My illness started with what I thought was flu. This lasted for 5 days and then I started with d which just wouldn't stop. The GP then thought I had gastroenteritis. After a few weeks I was told to take Imodium then codeine to ease the d. They both just resulted in blocking me up for a day then the next day I would 'explode' again. As well as the d I am suffering with extreme fatigue. I am normally a nursery (kindergarten) teacher but I just do not have the strength to work at the moment. I love my job and want to get back asap. I get a variety of different stomach pains which are mainly on the right side above my belly button. Nausea and bloating are also typical.
So far I have not been able to find any food that triggers my symptoms. I was advised by the GP to avoid insoluable fibre so have avoided all fruit except bananas and I have not felt any urge to drink alcohol.
When I saw the GI for the first time he prescribed me Asacol as he said it would do me no harm either way. I have found that it has firmed my bms up slightly but little other benefit. After my colonoscopy I saw a different GI and as my test was clear he offered little advice. I had to push to get the CT scan done as quickly as possible. He did talk about giving me steroids but decided against it as the side effects can be bad and I do not have a diagnois yet. I understand why he did this but I just want to get better now...
He also mentioned that I might be depressed and/or have anxiety. Argh!!!! I explained to him as calmly as possible that I had neither of these and although I have been ill and unable to do a lot of things for 6 months I am keeping positive (as best I can!). I am fed up but not depressed. From reading other posts I have seen that many others have had such responsed from GIs too.
So at the moment I am in a bit of limbo. I am really wanting to get a diagnosis so that I know what I am tackling and how to fight it.
I look forward to any advice you can give me. I am seeing the GI again in less than 2 weeks to look at the CT results and hope to go armed with information and questions.
Sorry for rambling. I never thought I'd have so much to type!

Sam

Welcome, Sam. I hope that you find answers soon. It can be very frustrating not having a diagnosis.

Hi Sam!!! Welcome to the forum. Yes, it can be the most troublesome disease to diagnose and some never do and some have a dx and then it changes. Even after 18 years of dx, symptoms since I was 15.... things can change, and appear to be good and the next it changes again. Hope you get some answers, lots of people here to help you out. LOts of info and some laughs or two, we need those in our lives.

Welcome aboard.

Hi Sam, check out this thread by Cat-a-tonic

http://www.crohnsforum.com/showthread.php?t=11082

I swear you could practically just change the names and the stories remain the same. It's a cruel disease to be dxed with and sometimes even more so not to be. Good luck and Welcome.

Hi Sam,

Sorry to hear all the trouble you are having, your symptons are exactly the same as mine and I have Crohns !!! How very frustrating for you, it took them over a year to diagnose me. Do you have private health care? In the end I had to go down that route to get further tests, not saying the NHS doesn't work of course it is a great thing, but I got quicker results by having private healthcare (know this isn't right). Do keep pushing and don't let them fob you off with no answers. Cross fingers your get some info after your CT scan. YOu could maybe suggest a Barium Enema to the GI and see what he says, sometimes they just dont' want to do these things but you have to keep on at them.
Good luck and let us know how you get on
Jo

hi Sam - welcome to the forum

you're doing the right thing, getting all the tests you can.. the best advice i can give you is keep on making the doctors listen. only you know how you feel physically, and you know when something's wrong. the fact that as yet nothing visible has shown up doesn't detract from the fact you're not well, and there has to be a reason for this. it's probably a good thing that your inflammation markers are up - they can't put that down to depression!

talking of which, so many of have had this thrown at us - you're depressed/anxious - well, yeah - we don't feel well and no-one's helping! also, Crohn's (and probably other IBD conditions too) certainly brings it's own element of depression into the equation.

good luck with your CT scan today - please let us know how it goes.

also, have a read of our diet sections - while you're undiagnosed and not on any meds, the one thing you can do is alter your diet to make it a more gentle one, easier on your digestive system.

Thank you so much for your messages. What a warm welcome.
Mark - Having read a few posts over the past 2 weeks I have seen many similarities with what I am going through. Thanks for the link.
Jo - When I last saw my GI I did mention going private (though I dont have insurance I would have scrimped the money together). He advised not to at the moment as he was pushing the ct scan through in 2 weeks and I will see him again 2 weeks after this. I will def ask for other tests if this one doesn't show anything. Thanks for your advice.
Dingbat - I was quite upset to be told I might have something that I know I havent got (I have had depression before but it was over 10 years ago so I know the symptoms). I did feel like he was trying to find easy answers. I have vowed to myself that I shall be strong and fight for what I need so am looking forward to reading more posts and getting more advice.
If anyone can give me anymore advice on dealing with fatigue I'd be very greatful. Each day is different. Some days I don't feel like I can do anything. Other days are better but I don't always know my limit (because I'm soooo bored I want to do stuff) and I overdo it and end up feeling shaky, grumpy and more exhausted. I'm also not sleeping great and often wake up feeling very hot. The GP gave me a week of sleeping tablets to try and kick start my sleep pattern back to normal. It didnt work that great and I'm sure not sleeping doesnt help my exhaustion.
2 hours til my ct scan. Fingers crossed!
Thank you all again
Sam

EXErCISE!!! I know when you are really ill this is obviously out of the question as sometimes you can't even get out of bed let alone go out for a run or down the gym. But if you are having a good day and you feel good, go outside and have a walk, if you have a gym or swimming pool near by then go there for some really gentle exercise. I swear by exercise, it keeps me alive and gives me so much more energy. Anything is worth a try once.

Thanks again!
My GP did advise me to do this and I have been trying! Especially as the weather has been so lovely over here at the moment.
I went for a walk yesterday with my boyfriend. it was lovely but the walk home was soooo hard I half joked that he should run back, get the car and come pick me up! At one point I think I was walking so slowly I was going backwards:lol2:
But I'm glad you have said that and I shall keep on with the exercise. No matter how slow I am.
Sam

i hear you on the lack of energy, and the broken sleep!

have you had a full blood count done recently, looking at things like iron, B12, electrolytes?

if not, you can ask your gp to organise this for you - and i'd strongly recommend it. when you've been poorly for so long, you can become deficient in various things, and deficiency is one the main causes of exhaustion/weakness. also, diarrhea can cause your electrolytes to be low (glucose, sodium etc..) and also fluid loss (dehydration) - again this can make you feel as you are right now.

plus - if you do have any kind of inflammation in your intestines, you may have poor absorption and therefore not getting all the nutrients & supplements that you need from your food.... and/or you may have a restricted diet which is lacking in these things.

Hi Sam, welcome to the forum. Wow, your story is nearly identical to mine! I've also had a variety of tests with so far "normal" results, I'm having a CT scan next week, they also thought I had gastroenteritis when I first became ill, and I also recently had a doctor tell me I "look depressed and seem anxious" (he tried to give me Zoloft for that and then he said I have IBS - I fought back and pushed him to give me prednisone, which seems to be working). Immodium doesn't work for me either, it does nothing. I tried Lomotil which a prescription-strength anti-diarrhea medicine (like a strong version of Immodium) - that worked to stop my d, so you may want to ask your doc about that. It doesn't help with any of the other symptoms, though (pain, fatigue, nausea, etc).

I agree with Reidyjo above who said to exercise. I usually don't have much energy but I make myself do yoga 3 times a week and I do feel better afterwards. I can't offer much else in the way of advice since it sounds like you're in pretty much exactly the same situation I'm in. I hope your CT results give you more answers! Don't give up, I know it's incredibly frustrating at times but eventually you and I will both have the answers we're looking for. Good luck, and again, welcome!

Thanks for your advice Dingbat. I know I've been checked for anemia but not sure about any of the others. I am vegetarian and already take multivitamins to ensure I get everything I need so hope thats helping. I am developing a great list of questions to take with me to the GI!
Hi Cat. Mark has already seen the connection between our symptoms. They do sound very familiar! I haven't been prescribed any anti depression tablets as yet but I think I'll have a similar response to you if they do! I was given some tablets for IBS symptoms to stop the cramping pains. Surprise, surprise they did nothing. When I told the original GI about them he basically knew they'd do nothing.
Have just got back from my ct scan. The stuff I had to drink was rank! It tasted like watered down ouzo. The waiting room was full of lovely people though and we laughed our way through it all! They also couldn't get the catheter in for the contrast. They took 3 goes so i now resemble a pin cushion. Hope your scan goes well Cat. The actual scan is fine!
I shall definately be trying harder with the exercise and hope that helps.
Thanks again everyone

Hi Sam
and welcome fellow Brit

I concur with everything! but also wanted to add, you're not depressed, you're ill with an IBD! I've had this crap thrown at me for donkey's years, depressed, neurotic, mental, all in my head, etc, at one point, think they were gonna do a lobotomy! lol
so I screamed and screamed, literally! I knew I had more than the old chesnut of IBS!
I got my dx, but it took nearly 15 years! so I feel your pain!
Pred was brill for me and I had tons of energy, I was off work for 4 months, had a massive flare and a week in hospital, and have just gone back (I work in a special school) and feel ok.
I take a Herbal Nytol every night, they are fab, without the grogginess the next morning, IMO, prescribed sleeping tablets are not the answer, sorry but GPs are all too quick to dish these out, and anti depressants, I know, been there, done that!!
I'm the captain of my ship now, so they can sod off!!

hope your doc gets you sorted soon and with something a bit stronger than asacol.
glad you found us, lots of friends here for you
lotsa luv
Joan xxx

Thanks for your reply Joan.
I too was taking Nytol and also night nurse to help me sleep but another GP told me not to as even the herbal ones are "habit forming". Might try them again occasionally though...
15 years to get diagnosed? Gosh! And I'm moaning about 6 months (though I think I may well have had whatever this is for a lot longer). Did you have loads of tests before they diagnosed you?
Am seeing my consultant in just over a week. Do you think I should ask to be put on something stronger? He did toy with giving me steroids last time but decided against it.
This is such a wonderful site. I've already found out loads!
Cheers
Sam

Hiya Sam

IMO your GP is talking out of the top of his hat!!
Nytol maybe habit forming, but herbal Nytol isn't and I have this on great authority from my gastro, it's just hops, valerian and passion flowers
it didn't take 15 years to get diagnosed, it took 15 years to get a referral! cos my GP was an old idiot! and probably dead now anyway!
when I got a referral, I found my knight in shining armour, my gastro, who did a scope and told me there and then that I had Crohns (which I knew) and after I sucked his face off with joy, he gave me some meds and I've never looked back!
maybe they'll give you some Pred? this will give you tons of energy, I was speeding on it, I loved it! I ate for England, and was bombing it around! of course, I'm glad to be off it, but it saved my life! we have a love/hate relationship! I would try it again if ever I needed to.
hope you get answers soon
xxx