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Crohn's Disease Forum » Your Story » Newbie. 6 Years still undiagnosed - HELP!


07-20-2015, 09:40 AM   #1
Sarahde
 
Join Date: Jul 2015
Newbie. 6 Years still undiagnosed - HELP!

Hi Everyone,
I'm a newbie to this group so thought I'd tell you a little about myself. I've done as much reading and research as possible and as yet have got nowhere. Starting to feel quite desperate now. Seen numerous doctors over the past 6 years and had the same results. The last doctor I saw in December 2014 was a consultant Gastroenterologist. Her diagnosis after a short chat and a abdominal ultra sound scan was ''you probably suffer from a little irritable bowel, there is nothing really I can suggest''!

Having suffered from IBS when I was younger I can safely say this is not that.

I started with severe bloating accompanied by lots and lots of burping about 6 years ago. Bloating so severe I couldn't wear my normal clothes some days. This was accompanied with constipation. I could go for anything upto 10 days! After speaking to a dietitian I cut all wheat & yeast out of my diet and had immediate results. Great I thought - that's it! No - just a few months later the constipation re-appeared as did scalp psoriasis and terrible stomach cramps. This time I was advised to cut diary out of my diet. I did and again I saw immediate results. The constipation was cured. Sadly the scalp psoriasis was not and still persists now.

I had approximately 3 years where I was managing then out of the blue the symptoms began to get worse. I am at the point where I am now scared of food as everything I eat seems to make me ill. Sometimes I have bouts so bad that I can literally visit the toilet 10 times in one day. After one of these bouts I am incredibly tired and virtually unable to function.
I now suffer from;
Severe bloating almost constantly.
Feeling sick constantly but particularly after eating.
Constant abdominal pain particularly under my ribs and down the left side of my abdomen. This pain becomes much worst when I go to the toilet and on a few occasions I have fainted with it.
The pain can usually be described as almost an acidic burning feeling along with contractions.
I can visit the toilet anything between 3 and 10 times a day.
Without being to gross I would describe what I pass as being like green/yellow glue (sorry)
I suffer with a burning mouth almost all the time.
I have recently been diagnosed with early onset Osteoarthritis in my hands.
I have scalp psoriasis.

Sorry for the long winded introduction. I would just be interested to hear if any of you have experienced any of these symptoms or have a diagnosis for anything similar? I would just love to be able to manage this and live a normal life.

Sarah
x

Last edited by Sarahde; 07-20-2015 at 10:10 AM.
07-20-2015, 10:21 AM   #2
UnXmas
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Hi - just to clarify, did this last doctor say you have Irritable Bowel Syndrome ? Irritable Bowel Syndrome is a condition that causes digestive symptoms with no objective positive test results. Irritable bowel disease is not a condition as far as I'm aware. Was it Irritable Bowel Syndrome you had when you were younger? (As oppose to IBD - Inflammatory Bowel Disease, i.e. Crohn's and Ulcerative Colitis.) [Edit - I see you changed your post, thanks for clarifying.]

Your response to diet changes seems unusual. Curing constipation by cutting out dairy is not something I've heard of before.

Given your unusual and severe symptoms, and the length of time they've been going on for, it seems wrong that you haven't had more attention from your doctor(s). Have you had no other tests - endoscopies, MRIs of your bowel, motility studies? What about basic blood tests, are they usually ok? Have you tried many medications, e.g. laxatives?

I can't say what you have, but I think there is a lot more testing you could have to try to find out. I realise finding a good doctor can be hard, but you need one who will put effort into trying to help you. If you do feel you react to foods, maybe an allergist could help? A gastroenterologist specialising in motility disorders may be another option, if you can find one. I'm sorry I can't offer more useful advice. I could recommend various anti-diarrhoea meds, anti-nausea meds, etc. but with so little known about your condition I think you really need a specialist to advise you.

There are many undiagnosed people on this forum though, and there are people who understand what it's like to live with these symptoms, so you can find a lot of support here.
07-20-2015, 10:32 AM   #3
Sarahde
 
Join Date: Jul 2015
Hi UnXmas,

Thank you for your reply. It was Irritable Bowel Syndrome I had when I was younger. My GP took bloods 2 years ago now and reported back that they were all normal. Prior to the bloods I had to eat both Gluten and Dairy for a week. On a subsequent visit she could not find the results and concluded that the samples must of been lost and the results she gave me invalid! I had the blood taken again and was told they were normal. She said she was looking for a raised white cell count?
The last doctor I saw in December 2014 I actually paid privately to see hoping this would lead to further investigations. Sadly after the abdominal ultrasound she said there would be no point in carrying out further tests as everything looked normal.
I did try laxatives years ago when I suffered constipation but they were not really very effective. However I've not needed that for some time now. I haven't tried anti diarrhoea meds.
Sarah
07-20-2015, 11:00 AM   #4
UnXmas
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You really need more tests! Are you in the UK? If so, you should not need to be paying to go privately. Find a good GP who will do new blood tests, not to specifically test for reactions to foods, but basic blood work to give a general idea of your state of health, e.g. checking for nutrient deficiencies and signs of infection or inflammation. Any GP should do this for a patient with ongoing diarrhoea.

Then get a referral to a gastroenterologist. I really think you need to see one who will do more for you.

There are various anti-diarrhoea meds, e.g. loperamide (Imodium) or Lomotil, but as I said, I think you need to know more about what is going on before you try treatments, though you could certainly ask a GP if they feel it's ok for you to try these kinds of meds.

When you saw this last doctor, did you feel you were able to get across to her all the symptoms you're having? Did she listen to you? Do you think it would help if you were to bring a family member or friend with you, if you have someone who could help you explain the extent of the problems you're having to the doctor? Again, if you're in the UK there are organisations who will help you communicate with doctors if you think that's a problem, e.g. http://www.nhs.uk/chq/pages/1082.aspx?CategoryID=68
07-20-2015, 11:10 AM   #5
Sarahde
 
Join Date: Jul 2015
Hi UnXmas,

Thanks. I am in the UK. I think I will change my GP. My current one will offer nothing more than bloods and a prescription for Colpermin (which does nothing for me).

When I saw the specialist (privately) I went into great detail with my symptoms. However after the scan she felt there was nothing more she could offer as she saw nothing abnormal on the scan. Maybe I've been unlucky with doctors.

I just feel that feeling this unwell everyday can not be normal and there must be some sort of diagnostic test that can be done.

Sarah
07-20-2015, 02:11 PM   #6
UnXmas
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It's not normal, and there are many tests that can be done. Doctors do have to be careful about ordering invasive tests, such as colonoscopies, without a good reason as the tests carry some (usually quite small) risks. But with your symptoms, I think some more testing is warranted. Definitely see what another gastroenterologist has to say. You don't need to go privately. You don't get any better care from a private doctor, and whether you are private or NHS makes no difference to the number or types of tests a doctor will order. The main difference is the length of waiting lists. Ask for another GP and another referral.
07-20-2015, 10:31 PM   #7
Lady Organic
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definately seek another GI opinion. The GI you saw is completely off. Ultrasound cant rule out an IBD. Ive never had an ultrasound in 14 years of IBD! and Ive never heard of ultra-sound as an interesting reliable test for IBD of the ileon (last part of small intestine) or the colon which are most commonly affected organs in IBD. Colonoscopy is gold standard test. With the recurring qt and intensity of cramps you report, you need further testing, thats quite obvious. A next easy test could be stool test Fecal calprotectine. maybe your GP can order it.
__________________
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
07-21-2015, 05:32 AM   #8
UnXmas
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definately seek another GI opinion. The GI you saw is completely off. Ultrasound cant rule out an IBD. Ive never had an ultrasound in 14 years of IBD! and Ive never heard of ultra-sound as an interesting reliable test for IBD of the ileon (last part of small intestine) or the colon which are most commonly affected organs in IBD. Colonoscopy is gold standard test. With the recurring qt and intensity of cramps you report, you need further testing, thats quite obvious. A next easy test could be stool test Fecal calprotectine. maybe your GP can order it.
This could be many things besides IBD though, so the test wouldn't have been aimed at ruling out IBD. I completely agree that the doctor was useless and an unltrsound is nowhere near enough given the symptoms, but I think it's important to remember there's no reason to assume IBD is the only/main possible diagnosis here.
07-25-2015, 02:15 PM   #9
wellen1981
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Also with regards to referrals and GPs a patient has every right to insist a GP refers them onto a specialist - often when the patient gets this switched on you will find the GP suddenly starts doing all the tests on the 'have to do before referring to a specialist' checklist. There's always things a GP is expected to do with a patient before a specialist will even accept a referral and GPs are the masters of not doing everything if they arent pushed to.
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