Possible Crohn's?

[ian2782]

Hi all,

I am a first time poster and have just been told that I may have Crohn's. I have been ill for 2 years and doctors could not find anything wrong with blood tests etc. It's quite a long story but i'll try and cut it short LOL. Was hoping for some advice on whether this could be Crohn's.

It started about 2 years ago. I was in sitting at my computer at work (in a call centre at the time and had a bit of a hangover as it was the weekend and was out for my mates birthday the night before). I wasn't feeling too good but then the person next to me asked me a question. I turned my head to answer her and suddenly went REALLY light headed/dizzy (felt like the blood stopped flowing to my head), was struggling to breathe, couldn't speak and my heart was pounding really hard and fast. This lasted about 20 secs (felt like 20mins lol) and people were screaming at me. Afterwards I didnt feel too great but carried on with my work.

When I went out for my break, I kept getting these weird sensations in my head like I was moving when I wasn't. This carried on for a week or so until I saw my doctor. The doctor told me it was probably a virus/viral chest infection and to come back in a month if things didn't get any better.

Basically, since then I have been seeing doctors almost once a month, had loads of tests and told that it was anxiety/depression, which i'm am absolutely positive it is not.

Anyway, the symptoms have gradually got a lot worse to the point where I have had to give up my job and have no social life whatsoever as I feel so ill.
Symptoms i've had are - Fatigue, dizziness, palpitations (at the beginning but not now) diarrhea, flu like symptoms, pain in my arms/upper body(especially in the morning) abdominal pain which seems to have settled below and behind my ribs on the right and is constant, nausea and vomiting, headaches, mouth pain/blisters on my tongue., disgusting taste/smell and dental problems. These are the main symptoms but I have had others. I have also lost a lot of weight (about a stone and a half, i'm now 9st 12lbs).

Tests i've had - Standard blood tests (LFT, kidney, thyroid, anaemia etc) chest x-ray, ecg (heart) MRI (head and neck), muscle enzyme blood test, ENT clinic for test on hearing/ears, helicobacter pylori blood test, endoscopy, ultrasound (abdominal and pelvic), urine sample, blood sugar, blood pressure etc. All these tests came back normal, apart from the endoscopy which showed I had gastritis.


After almost 2 years of doctors telling me they couldn't find anything, I got a letter from the local hospital to attend a clinic. When I went, he said that this was dragging on too long and that there was obviiously something wrong as I looked very ill. He gave me a check over, asked a few questions and took some blood. He then said I needed a CT scan and that he would mark it as urgent, but he thought that I possibly had some sort of IBD like Crohn's.

Anyway, enough of my waffling! Does this story ring true with anyone? Could this be Crohn's? I have to say i'm not convinced. I'm more worried that it could be my liver, but I suppose i'll just have to wait and see.

I have know a couple of people with Crohn's. My brothers girlfriend has Crohn's and I also had a friend who had it, who has sadly recently passed away. What I have seems to be different to what they have but I suppose it affects people differently.

 

[Crohn's 35]

HI there, and welcome to the forum. You have alot of the classic symptoms but the dizziness I am not aware of. I have it now cause of a middle ear infection but, you could be anemic? Our family is very familiar with all the IBD, and IBS is just as debilitating. I have had many Ct scans but I am surprised you havent had a colonoscopy yet. It is very hard to diagnose Crohns, one of the most mysterious to get an answer from, some took years, months. Everyone is different with underlying problems, no two are exactly alike. Let us know what the outcome is from your test. Even if you have any type of IBS or IBD you are still welcomed here, always.

 

[Guest]

hi Ian, welcome to the forum.

well, firstly i am so pleased that at last someone has said the right thing - that it's gone on too long - and is taking action! the fact that 'something' showed up on your endoscopy makes me think that all the symptoms are probably to do with an IBD of one kind or another rather than anything else like your liver, particularly as your liver function test was ok.

Crohn's sufferers can and do get a multitude of symptoms and feelings, and they can differ greatly from one person to the next. i get a lot of the dizzyness and faintness.. i'm not sure exactly why, sometimes it's worse when my B12 shot is due, so that could explain that part. personally, i think it's a sign of general debilitation, long-term poor absorbtion, and a restricted diet - all of which we can get with Crohn's or in fact any IBD. another major cause of feeling faint/dizzy is dehydration, again common if you're having diarrhea and/or sweats. try buying some rehydration powders over the counter and having one... see if you feel better. if you do, have one every day you have a loose motion.

i hope the CT scan comes around soon. let us know how things go. and good luck!

 

[ian2782]

Thanks for the replies. I have been checked for anaemia a few times and the results came back 'normal'. As for the dehydration, every time I have bloods done they do show that I am slightly dehydrated, though not enough to concern my doc, so I may try some rehydration powders.

Since writing the above this morning, I have since had my hospital appointment confirmed as December 9th, but it's not for a CT scan as I thought, it's for a Barium follow through.

My main problem at the moment is the taste in my mouth. Since becoming ill, my teeth have gotten pretty bad and lately the tast has been constant to the point of nausea/ not wanting to eat. I know it's not a dental problem as i've just spent close to £1000 on dental treatment. There is also a smell which I can't shift either. it's horrible. Anyone else get this? That's another reason why I think the problem lies with my liver. The fruity/acetone tast/smell is a sign of liver problems as far as I know.

 

[Guest]

yummy - a barium meal! lol.

well that is one of the regular tests they do... so let's hope you're on the way to being diagnosed..

regarding dehydration, in my experience, people don't take it seriously enough. after my surgery years ago, i passed out a few times, had to be taken via ambulance to A&E and admitted - purely to have a drip put up because i was dehydrated. once i discovered the sachets, and recognised the signs, i've since avoided it getting that bad.

 

[Crohn's 35]

Ah, the ever great tasting barium follow through... From what I remember, dont quote me but I have had these alot, and it will show any abnormalites in the intestines and colon and see if there is any thickening or narrowing which is a sure sign of IBD. Having said that, it may not show infections, even when I had a colonoscopy, a few times, they couldnt get near it because of scaring and the looping where my Appendicts was. Also the biopsy has to be in the right place of pus or inflammation. Try not to speculate, and drink alot of water, people here know I am a water pusher, I drink bottled water. Also eliminate dairy and wheat for the moment, they cause pain and gas. To see if you are dehydrated, pinch the skin on the back of your hand and raise it and let it go, if it goes down slow, drink more water. Potassium levels that are low can cause water imbalance to the body too. Hang in there ok and let us know the results of the Barium.

 

[ian2782]

Yeah, i have been avoiding wheat lately. I have noticed that I seem to vomit more on the days I have cereal for breakfast. Great. I love cereal! And I do try to drink bottled water as well.

 

[Guestly]

Hey Ian,

Sounds like you have had a rough time recently, so welcome to the forum. You have come to the right place for support, and I hope your doc comes up with some answers soon - knowledge is power, you will feel so much better once you know what is going on.

Good Luck

Lishyloo

 

[farm]

:welcome: you will find lots of help and support here!! I'm glad you found us!

 

[Arin B]

Hey Ian,
Welcome! I'm new here, too, and am also dying (literally) for a diagnosis. My symptoms are pretty similar to yours, and I've also had 'normal" results from a lot of my tests. Do you get really fatigued? Like so fatigued that you can't get out of bed? I slept 14 hours last night and woke up with a new sore in my mouth and a low grade fever.
Anyway, I'm hoping for some results for you! Let us know what happens

 

[ian2782]

Hi Arin,
Yeah, the fatigue when I first got ill was REALLY bad. I was sleeping 14 hours every night and still could hardly get out of bed. Had to give up work a year ago because of the fatigue. I worked as a night porter for a few months and it involved a lot of heavy lifting which I just could not do. Sometimes I felt like I was going to fall asleep standing up! Also got so bad I could hardly hold myself up and my body was shaking I was so tired, which resulted in me having these weird convulsions when I tried to fall asleep. Not nice. Also quite often have a low grade fever, nothing too bad though. The fatigue hasn't been that bad lately, but I do still feel quite tired/slugish a lot of the time. It seems to be getting easier to deal with now. There was a point where I couldn't even leave the house because I was so tired but i'm slowly doing more and more each day and it's getting better, although i've a long way to go yet.

Hopefully you'll get a dagnosis soon too! It sucks being ill. i think it's the not knowing thats getting me.

 

[ian2782]

just had the hospital on the phone. I now go for the barium meal on Tuesday next week as they had a cancellation.

 

[beth]

Good news on the follow through test - get it over and done with quickly!

"fruity/acetone" makes me think of hyperglycemia, aka you might be diabetic, but they've checked your blood sugar when this has been going on haven't they...

Anyway, Welcome!

 

[ian2782]

Hi Beth,

Yeah, had my blood sugar checked, just the once. Also thought of diabetes myself, so I bought some dipsticks to test at home for diaetes and also ketones as I was told I had all the symptoms of possible diabetic ketoacidosis, but they were all negative.

 

[ian2782]

Well guys, had the barium meal today. All went well, 2 x-rays and then the screening. Doctor said he couldn't see anything obviously wrong but he will have a closer look and report his findings to my doc. All being well, should get the results in 7 - 10 days.

 

[Peggy]

Hi Ian, welcome, you will get a lot of support on here, some good tips as well. Hope you get sorted soon, The Doctors took a while to sort out my hubby as well, they just kept starving him, then when he felf better they would dicharge him, as soon as he ate anything he was back to sqaure one. They did eventualy find crohns disease that was 26years ago, he is stable on a few drugs now. He will take these for the rest of his life, but hey ho. Peggy