Crohn's Disease Forum » Your Story » Need advice... not diagnosed -(autoimmune diseases)


08-12-2009, 04:58 AM   #1
clover445
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Need advice... not diagnosed -(autoimmune diseases)

Hello

I have been reading these boards for a while and have found great advice/comfort in many of the posts.

Im a 26 year old female living in the UK. I have felt poorly on and off for about 4 years. It all started with a sharp right hand pain in my side close to my appendix scar (had appendix out when I was 16) and a high fever. I had blood in my urine so was diagnosed with a severe kidney infection, however when the results came back from the hospital no infection was found in my urine and it was just put down to unknown. I started to get better but the sharp right hand pain kept appearing evey now and then and to this day has never gone away. It only lasts 30 seconds or so and sometimes isnt everyday. I kind of forgot about the pain, it didnt really hinder my life considering it was only around for such a short amount of time. I did notice though that I nearly always had loose stools and occassional crampy pains with watery diarreah. I just thought this was normal though so didnt really pursue it.

Then about two years ago I started to feel just not right, I was cold all the time, tired, I ached and just felt out of sorts. I went to the doctors and explained all of this, I had loads of blood tests which came back to show i had an underactive thyroid. I was put on thyroxine and within 2 weeks I felt so much better and honestly believed this was the answer to all my problems. It didnt take long though for me to feel bad again and this time my vision went blurry, I went to see an opticion who diagnosed dry eyes. I saw endocrinologists/ opthamologists but no one could help me. 2 years on I still feel achey, sick, fluey and have uveitis in my eyes. 6 months ago I then started to develop central stomach cramps which appeared 3 - 4 hours after eating. These persisted for about 2 months and then went away for a month. When they came back they were a bit worse and sooner after eating. Im not in agony but im certainly aware of pain which sometimes wakes me in the night. Ive lost about a stone (I was skinny before) even though I do eat a lot of food. I love food but the crampy feelings are starting to make me scared of eating. I guess then I started to tie the years of diareah in with the pains.

I was refered to a gasterenterologist who immedietly said he thought it was chrons, he said everything I had told him indicated it was chrons. I had a barium follow through last week which was clear and an ultrasound the week before which was also clear. I then had a colonoscopy yesterday and he couldnt get all the way round. Im not sure how far he got but I dont think it was very far. He said that is quite normal with young people and their anatomy means its difficult to reach all the way through? is this right? Anyway what he did see was clear although he did take biopsies. I have an appointment with him in 6 weeks but mum said he now doesnt think chrons as my blood work was normal too.

I am sooooooooooooooo frustrated. Ok dont get me wrong I dont want chrons disease but I feel awful everyday and i need answers. It just isnt fair, I keep thinking people are going to start thinking im making it up. Its got to the stage now where i dont tell people anything as its easier than saying im poorly but no one knows why.

By the way my dad has protein s deficiency which is a very rare autoimmine disease. (i dont have that) he also has rhematoid arthritis and i have a sister who is confined to a wheelchair with severe arthtiris of the spine and a growth on her thyroid. My GP is convinced something autoimmune is going on but ive had so many blood tests which are all so inconclusive.

Any help or advice would be so welcomed.

If you have read this far thank you so much xxxxxxxxxx
08-12-2009, 06:53 AM   #2
My Butt Hurts
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Hi Clover - I'm sorry you're feeling so crappy.
I know what you mean - you don't WANT Crohn's but you do want an answer. I hope the time between now and your appointment goes quickly.
Maybe you could try a low residue diet until then (google it) and see if it help you feel even a teeny bit better. Or if you are becoming afraid to eat, try supplemental drinks like Boost, Ensure, or even SLim-Fast (not sure what brands you have over there).
Sometimes it takes a while to get a proper diagnosis, so hang in there.
Let us know how your appointment goes, good luck - and welcome!
08-12-2009, 06:57 AM   #3
clover445
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Hi, thank you so much for your response.

Do you know if you can have a clear barium swallow and clear colonoscopy and still have chrons? I have all the symptoms except blood in my stool and yet tests were clear.

xx
08-12-2009, 07:05 AM   #4
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I think you can. A LOT of people on here don't even have a proper diagnosis, but they are being treated with Crohn's type meds. You DON'T have to have blood in your stool for it to be Crohn's either. I was diagnosed 4 years before I ever had blood I think. Many people on here don't ever bleed - so don't let the docs tell you that you have to for it to be Crohn's. There are like 239847 different symptoms, and everyone has a different combo of them, seems like no one on here is exactly the same. PLUS - Crohn's can be anywhere from your lips to your anus, and your scope didn't get very far.
A lot of the tests seem to fail us.
I'm sure someone else will chime in with their opinion too. I'm not too bright on the testing aspect of it all.
08-12-2009, 09:08 AM   #5
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clover445 said:
Hi, thank you so much for your response.

Do you know if you can have a clear barium swallow and clear colonoscopy and still have chrons? I have all the symptoms except blood in my stool and yet tests were clear.

xx
Welcome to the forum. And yes, you can definitely have Crohn's and normal testing done. Crohn's only comes up visibly in 1 out of 6 colonoscopies. My step-dad had 2-3 colonoscopies done before they found his Ulcerative Colitis.

As for myself, I am personally waiting for a diagnosis. Since Nov. of last year, I have ached crohnically in my right side daily, had major d, fatigue, recent joint pain, etc. with normal tests.
08-12-2009, 09:15 AM   #6
clover445
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Thank you both so much for your help. I just constantly feel like im banging my head against a brick wall, I have put my poor body through all these tests for nothing. I just cant understand how you can feel so poorly and everything say you are normal. I just hate the way the doctors look at you and say "results normal" like im making it up or something. I wish they could feel what i feel for one day.

so sorry you are still battling a diagnosis. im close to giving up and coming to terms with this is my life and i just have to live with it.

xx
08-12-2009, 11:06 AM   #7
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clover445 said:
Thank you both so much for your help. I just constantly feel like im banging my head against a brick wall, I have put my poor body through all these tests for nothing. I just cant understand how you can feel so poorly and everything say you are normal. I just hate the way the doctors look at you and say "results normal" like im making it up or something. I wish they could feel what i feel for one day.

so sorry you are still battling a diagnosis. im close to giving up and coming to terms with this is my life and i just have to live with it.

xx
I can relate to you completely. I'm scared to death of what sort of damage is happening to my body while I sit around waiting for a diagnosis. I had a follow-up appointment on the 6th, but unfortunately had to cancel, so now it's the 27th and it couldn't come sooner...although I'm sure it's going to be another appointment leaving me bitter and clueless.
08-12-2009, 03:47 PM   #8
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Hey Clover,

Glad you felt you could post and talk things through with us whether it turns out to be crohns or not.

You must keep pushing and fighting. You definately have problems and many of us here have been told at one time or another its all in our heads. The point is though that we KNOW our own body and when its not right!!

Unfortunately as you know alot of health problems can have similar symptoms so it can take a while to untangle it all. Hang in there things will improve honey ((hugs)).

On the crohns front my crohns wasnt thought of until my GI did a gastric emptying test and a bile salts test (he originally thought I was Coeliac because I am of irish decent and its more prominent in the irish apparently). Bile salts are reabsorbed at the end of the small intestine where it meets the large intestine - thats where my crohns was found. The gastric emptying test showed my food was travelling very very fast then slowed then sped up alot again which he said there were some functional issues which could be down to poor absorption or ulceration or just plain IBS but that there was definately something going on.

My blood tests rarely go outside normal parameters unless I am really really ill and my GI told me that many crohns patients are in the same boat. So dont give up. I have had all sorts of tests on the immune front over the years and it was actually my asthma/allergy consultant that originally decided I had autoimmune problems and started the ball rolling for me.

I would also push your GI to explain in more detail why he couldnt get round your colon. To say alot of young folk have different anatomy is an odd thing to say (just thinking out loud here). You need more specifics..

The battery of tests is exhausting and demoralising when you dont feel the answers are coming and you know how you feel and that your body is crying for help.

Feel free to talk to us any time. If we dont have the answers from our own experience we will always listen ok?

Thinking of you ((hugs))
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Last edited by soupdragon69; 08-12-2009 at 03:50 PM.
08-12-2009, 05:41 PM   #9
kenny
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when I look back over the past ten years of something being "not quite right" I get frustrated that my family doctor didn't find out what we know now. But I just did the best I could do every day and tried to live a healthy lifestyle.

If it helps at all, I have hole in my bowel that leaks into a abscess which gets drained through a tube. I have had biopsies done and am being treated with crohns meds. I have a bowel resection scheduled for two months from now and I still don't have a Definite Diagnosis yet. So Even if they don't nail things down your treatment can be underway with diet restrictions and medications.
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08-12-2009, 05:45 PM   #10
Nancy Lee
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Just popping in to welcome Clover and also Kenny!

Thank you for joining the Forum and I'm
sure you will get a lot of great information here.

Healing hugs to you both~Nancy
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08-12-2009, 06:34 PM   #11
Creepy Lurker
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Hello new people.

I think a few people around here have been diagnosed with microscopic colitis

http://en.wikipedia.org/wiki/Microscopic_colitis

It's virtually invisible and can be quite hard to diagnose.
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08-13-2009, 08:38 AM   #12
clover445
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Thank you all so much for your replies. Its nice to know im not alone, although im sorry you have had or are going through a rough time.

I have tried to do some research about incomplete colonoscopies and it seems its quite unusual that they cant get all the way round. Something like 5% and he said to me the reason was my anatomy being twisty and tight but according to the research i have done that should make me constipated not having diarreah 4 times a day??

Soup dragon, i do really feel my problems are all autoimmune related especially after being diagnosed 2 months ago with uveitis. Apparently thats often the first sign of systematic disease in the body. I dont know how you feel but i just feel crappy, thats the best way i can describe it.

I wont give up because i know in my heart of hearts something is wrong but i dont want anymore tests. As mad as it sounds im hoping something will happen to make the doctors suddenly realise whats wrong. I didnt have stomach cramps 7 months ago so maybe something else new will appear.

Does anyone know if it takes a while for inflammation to appear in tests? Also could narrowing in my colon be down to chrons? would that make sense why the dr couldnt finish the colonoscopy. All he said was that it was tight. I was recovering from sedation so couldnt ask anymore.

thanks for all of your help xxx
08-13-2009, 09:12 AM   #13
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Microscopic colitis sucks. I was dx with that years ago. I was having diarrhea and then constipation, on and off for both, pain, nausea, vomiting, then it would just disappear. Had a colonoscopy and, luckily, the GI did a biopsy. Said although my colon LOOKED fine, he found MC in the biopsy sample he had taken.

Although you can't outright see something, sometimes it is there. That can be scary.

Then, apparently, the MC took a turn into some kind of Colitis, unknown whether Ulcerative or Crohn's yet, last year. Now the c-oscopies show major inflammation.

So even if inflammation doesn't appear at first, ask them to take samples if possible. If he hadn't that first time, I wouldn't have known about the MC.

Good luck!
08-13-2009, 02:25 PM   #14
kenny
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The colonoscopy I had a few weeks ago went over time. It seemed like they had the same kind of trouble getting around the "Horns" that they had with you Clover. But since the surgeon wanted them to see that Ileum valve thing they pushed on with it. They doubled the sedative and put a nurse on each side of my chest pushing in as well as had me flip to my back and side a few times to help jiggle it onward. It was not a very pleasant experience but paid off because they wanted biopsies from up in there to check for cancer.

On the diagnosis thing. The GI surgeon and general GI specialty team I am dealing with have explained to me that definitive crohns diagnosis is reserved until some kind of crystalline structure is identified from the biopsies or from the material removed during surgery. Until then they treat it for what it is regardless of what name anyone wants to attach to it.
08-14-2009, 12:48 AM   #15
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hey i had all the same feelings that you explained originally i think in a similar order too, have you had a CT scan? that is what showed for me, when i had my colonoscopy they also couldnt get through i was stopped at the ilieum which i later found may have not been working for a lot longer than i thought.
Hang in there
08-14-2009, 03:38 AM   #16
clover445
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Hey

Thank you all so much for your replies, I am so uninformed and learning everyday. It seems that so many of you have been through so much.

Schulzy, I havent had a CT scan, only a barium swallow, an ultra sound and half a colonoscopy. Did you have those other tests prior to the CT scan? Interesting that you can relate to the way I felt as I find it so hard to describe. Its just a general feeling of illness. Im due to see the consultant in a month so will go from there. Amazingly whilst i feel poorly my pains have not been so bad the last few days, they are tending to come and go.

Kenny, Schulzy, You are the first people that have mentioned the struggle the consultants had getting round your colon, do you think this is normal? As he just seemed to brush it aside with me.

xx
10-29-2009, 08:19 AM   #17
clover445
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Hi everyone,

Its 2 months on since my last post so thought I would give an update!

I had a follow up appointment with the consultant last month about the tests etc. He said all my symptoms sounded like chrons/collitis but it wasnt found in the tests. He said he only got to the first turn in my large intestine in the colonoscopy so refered me to another consultant to do another colonoscopy. I saw this consultant a couple of weeks agao and he said I absoloutly didnt have chrons, there was no point re doing any tests and my symptoms sounded just like fibromyalgia. I have accepted this as a diagnosis and am trying to get on with my life. I guess the only thing that scares me is I have now experienced blood in my stool. Its not a lot but it is very noticeable and it has only happend twice. The consultant said this is normal with IBS and i should not worry. GP says it is not normal to not be able to complete a colonoscopy nor is it normal to have blood. I have all the same symptoms i described above.

What do you all think I should do? The consultant made me feel like I was wasting his time and that I should just get on with my life without moaning. I had resigned myself to doing that, im just a bit worried about why i bled?

xxx
10-29-2009, 10:30 AM   #18
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Hi Clover... welcome back. In the UK you should be able to exercise patient's choice... something you can do via your GP. Try and do some research, if you can find a decent consultant in your area and it should be possible to refer you there. I did this with my "other disease", which my local hospital didn't cater for very well. I had one unsatisfactory appointment and then got re-referred by my GP to professor somebody-or-other in another city.
You shouldn't be left feeling like you do, in my opinion. It's the consultant's job to sort you out. If you do happen to have crohns, then the sooner you are diagnosed the sooner you can be treated and get on with life.
I've passed a lot of blood... it can happen with crohns... is it "normal" for IBS?
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10-29-2009, 11:17 AM   #19
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Blood is not a symptom of IBS. You may have IBS as well as something else which is causing the bleeding. Crohn's may or may not cause bleeding.

Sounds like the consultant is an ass.
10-29-2009, 01:06 PM   #20
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I agree - I would talk to another consultant!

This is your life, Clover! If you're not comfortable w/your (un)diagnosis, talk to another doctor.

Let us know....
10-29-2009, 08:31 PM   #21
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Clover what part of England do you live in if you don't mind me asking?

If you live anywhere along the M62 corridor/the North I'd recommend my specialist at Pinderfields Hospital in Wakefield - the guy's a genius. You're experience with your doctors sound awful - it goes to show the difference a good doctor can make in your self worth and faith in your ability to get better. I was called into hospital by my specialist on Wednesday night- the next day was his day off but he insisted I come in because of the severity of my blood tests. Then within two days I had done a flexi sigmoidoscopy, the camera down my throat to test for Celiac etc + biopsies,X rays,blood tests and a CT scan and by Friday evening I had all the medication I needed for 3 months and a follow up appointment with a specialist IBD nurse booked in for a fortnights time. It was a bit of an enslaught but my doctor was so cool and understanding I had complete trust in him and the nurses(including one I know) seemed to be in awe of his ability so I couldnt recommend him enough. You deserve better than the service you're getting at the mo.

If you give just a the region I'm sure others would be willing to recommend their specialists and you can excercise you're right of choice.

Also, perhaps you might want to ask about a bacteria called Yersinia, I had a biopsy taken to check for it - apparantly it causes all the symptoms of Crohn's without any of the ulceration etc. Its very rare though.

http://en.wikipedia.org/wiki/Yersinia

It's a longshot but knowledge is power.
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10-30-2009, 06:03 AM   #22
clover445
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Hi guys

Thank you so much for replying. I read this forum a lot trying to gather information etc. You are all so kind and have been through so much.

I live in East Anglia so unfortunatly not near Wakefield but that consultant sounds amazing and actually like he genuinly cared. Other than my GP and a neurologist I have seen I have never felt that anyone cares that much. I got diagnosed with an underactive thyroid last year and it was thought all my symptoms tied in with that so i saw the endocrinologist, then a neurologist as my eyes suddenly went blurry, then an opthamologist as I had uveitis and then the first GI. To be honest guys I cant keep fighting with the medical proffession, ive just not got the strength anymore. My GP is sure its some form of IBD that is lingering and it just isnt ready show up yet. Im not sure what I think, I guess it will either go on its own or get worse. If it gets worse surely it will show up and then i can stick 2 fingers up to everyone that has doubted me. Dont get me wrong I do not want IBD or any other disease but I know my body and i know something is wrong.

Has anyone else got experiences of incomplete colonoscopy? xxx
10-30-2009, 06:16 AM   #23
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I've had problems with various "oscopies" and barium enemas. It seems the bit of colon that goes up my right side gets a bit clogged up and sometimes even prep doesn't clear it, and I've been accused of not following the prep instructions properly (but I always do). That bit of colon also seems to be the seat of my current problems, and apparently the site of mulitiple fistulas (so they say). When I'm not feeling so well, it feels like that whole area has been filled with gravel.
At the moment I seem to alternate between C & D. I think that bit of colon gets clogged up, and then releases itself in a rather spectacular and painful fashion!
Next time I think I may go on a near liquid diet for a whole week and see if that helps.
10-30-2009, 10:11 AM   #24
clover445
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Thanks for replying guys, you are being so helpful.

They only got the scope up the left side of my colon and got stuck at the first turn so it didnt go very far at all. I did ask him and he said it was normal for some people if they have sharp turns/ narrowings in the colon so I didnt really push it. It was my GP that said it really isnt normal and they should have got it all the way round.

I also alternate between C & D, mostly in the same stool. I will have loads of tiny pellets and then loads of D. Its yucky!

I think your right peaches and I am going to have to just wait, it will either get better or something drastic will happen.

I have had eye drops for my eyes, they seem to be under control at the moment.

xxx
10-30-2009, 10:28 PM   #25
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hey Clover. I too had difficulty from a colonoscopy. I had scar tissue from radiation therapy damage. The first doctor just gave up and said she couldn't go further. However, my next scope by a different doctor just used a baby sized tube and it went just fine. He said that happens also to people with narrowings. good luck
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