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Crohn's Disease Forum » Support Forum » Undiagnosed Club » I am undiagnosed and wondering if I could have ibd


09-16-2013, 06:32 AM   #1
Sleepingbeauty
 
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I am undiagnosed and wondering if I could have ibd

For the last ten years I've had serious IBS-D. Many times I have been house bound for weeks or months at a time. For the last 4 months I've had horrible new symptoms and no full diagnosis.

But the great thing was that I was on tylenol-3 and all my IBS symptoms disappeared... until last week. Now I am being woken up in the middle of the night with pain. Every two or three days I have diarrhea after I am woken up. Pass out from the pain type of diarrhea. Cold sweats and nausea type of diarrhea that takes forever to pass.

I have had a endoscopy recently and I am seeing my gi doc next week for the results. From my gp's report she told me the following (I will get the report after I see the gi doc)
  • There was gastritis
  • the biopsies were clear
  • There was no h-pylori
  • There was mention of functional pain

My original symptoms that prompted the endoscopy and the lovely tylenol -3's.
  • extreme back pain (upper left back between shoulder blade and spine)
  • no restriction or pain due to movement
  • 50 lbs of weight loss over last two years woot woot (no dieting)
  • tingling fingers on left hand
  • pain worse after eating
  • extreme sensitivity to cold
  • pain worse when cold
  • fevers on and off
  • lymph nodes (whack a mole behaviour - one lymph node pops up and when it goes down another springs up)
  • nausea
  • extreme fatigue
  • left arm pain

I was concerned about pancreatic cancer and there is a cyst on my pancreas. But the doctors cannot say that I have it. So they're looking for other diagnosis. I was wondering if any of this sounds familiar. Right now I just want to know what's going on.

Thanks for listening,
Connie
09-16-2013, 03:08 PM   #2
Sleepingbeauty
 
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I have been reading more of this site and wonder if the following symptoms that I've had for a long time shed any help:

I hope I didn't intimidate people with my writing style. It's not very Good . I'm an engineer so forgive my data intensive post.
  • I have multiple food intolerance (gluten, soy, sugar and yeast)
  • my mouth breaks out in sores occasionally
  • my wrists and ankles give out on me under some circumstances
  • my poop has been sticky on and off for a year
  • I am deficient in many vitamins. I take monthly b12 shots and mega doses of vitamin d and iron just to get low on blood tests
  • i am on omeprazole for acid reflux and I don't know if it's doing anything
  • I have a hiatal hernia
09-16-2013, 03:19 PM   #3
nogutsnoglory
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I wouldn't rule anything out but your symptoms don't jump out at me as indicative of inflammatory bowel disease.

We all vary but generally the symptoms are diarrhea, cramping, blood in stool, gas, suppressed appetite, weight loss and fatigue.

For a full list check out: http://www.mayoclinic.com/health/inf...CTION=symptoms

The best thing is to get in touch with a gastroenterologist who can evaluate you and see if further testing is warranted. Sorry you don't feel well.
09-16-2013, 03:24 PM   #4
bozzylozzy
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Hi connie.. dont worry about writing style.. it actually makes it easier for me to understand your situation/symptoms etc..

All the symptoms described could be IBD. Have you had a colonoscopy? This is what I suggest you should have..
Has your GI mentioned what they think you have?
Because IBS does not cause those vitamin deficiencies or being woken up in the night.. im guessing they biopsied during your endoscopy to check for coeliac aswell?..

I hope you can get some answers soon! And feel free to vent and ask questions any time. If it isnt IBD that you have.. there are other conditions that mimic IBD such as bechets and other auto immune illnesses.

Please keep us updated
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09-16-2013, 04:03 PM   #5
Sleepingbeauty
 
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I just was sent for the endoscopy by my GP about a month ago. After the endoscopy the GI doc asked to see me, and I have an appointment next week. His report did not include his suspicions or the reason for the follow up. I have had an endoscopy and colonoscopy before and he is the one who diagnosed me with IBS, but my symptoms are different (more systems are involved) this time.

I have been off of gluten completely for about 6 years. I was never diagnosed with celiac's but I had been off of gluten for about 4 months before I had the blood test or the endoscopy (so even if I did have celiac's it would not have showed). All I know is that I get a heck of a reaction when I do get glutened. Getting off of gluten changed my life so much that I have never gone back to it (except by mistake or a few times when I was pissed a the world).

Thanks
Connie
09-16-2013, 04:11 PM   #6
bozzylozzy
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Im glad the gastro has made an appointment so soon.. hopefully he has some ideas of what to do next.
It will be a good idea to get a list of symptoms written down and any questions you have, so you dont forget anything.

Also - do you have any family history of IBD or any other auto immune illnesses?
09-16-2013, 04:48 PM   #7
Sleepingbeauty
 
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No Crohn's that I know of, but quite a bit of other auto-immune. I have high levels of the hashimoto's antibodies so that is evidence of some autoimmune activity. I am not going to be treated for it until my thyroid conks out, according to the endocrinologist. I had a brother with Ankylosing Spondylitis, Schizophrenia and Psoriatic Arthritis.

I have a list of symptoms, but a couple of times I have forgotten the list. lol.
09-16-2013, 06:50 PM   #8
Ihurt
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Actually, I had an argument with my doctor practically about the whole IBS should not wake you up at night. I was told that it can wake you up at night. It all depends on what you ate that day etc... I myself also am not diagnosed, I keep being told I have IBS, but my symptoms do Not fit IBS. I also have been woken up at times with pain. I have had to use my heating pad during the night just to help with the pain. Very frustrating not knowing what is wrong, I feel for you...











[QUOTE=bozzylozzy;703072]Hi connie.. dont worry about writing style.. it actually makes it easier for me to understand your situation/symptoms etc..

All the symptoms described could be IBD. Have you had a colonoscopy? This is what I suggest you should have..
Has your GI mentioned what they think you have?
Because IBS does not cause those vitamin deficiencies or being woken up in the night.. im guessing they biopsied during your endoscopy to check for coeliac aswell?..
09-16-2013, 07:27 PM   #9
Sleepingbeauty
 
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Honestly, I am not sure what to think. I have never seen blood in my poop. And whatever I am going through now is markedly different from ibs. I am pretty sure that what I had before was ibs. It was bad ibs but it felt right (except the caused by stress thing - I joked it was caused by eating).

To me there are a whole bunch of systems all getting together for this pick on Connie party. Endocrine, nervous, gastrointestinal, skeletal, skin, reproductive. You name it there is a symptom from that system.
09-17-2013, 04:36 PM   #10
Sleepingbeauty
 
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Actually, I had an argument with my doctor practically about the whole IBS should not wake you up at night. I was told that it can wake you up at night. It all depends on what you ate that day etc... I myself also am not diagnosed, I keep being told I have IBS, but my symptoms do Not fit IBS. I also have been woken up at times with pain. I have had to use my heating pad during the night just to help with the pain. Very frustrating not knowing what is wrong, I feel for you...
I think sometimes I would rather have a bad diagnosis than no diagnosis at all. Four months of pain and I'm tired of explaining, researching, going to Dr appointments, and at the same time dealing with the symptoms. And don't get me started on the disappointment of inconclusive tests. Thankfully I don't work.

My IBS has never woken me up before. Things are different now.
09-17-2013, 04:55 PM   #11
Ihurt
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I hear what you are saying. I have been through the same merry go round as well. Every doctor I go to seems to be of little to No help. I also have many issues going on as well just like you said. I feel like I am in a boat that keeps having holes pop up and I cannot bail out quick enough. Having No diagnosis is horrible, I know, I have been living that for the last 10 years really. I have all these issues and they cannot figure it out. I just got back from seeing a rheumatologist and he took a ton of blood work but basically said that there is NOT going to be a quick fix for whatever I am sick with. I asked him if I could possibly have crohns due to all my other manifestations ( muscle pains, joint pain, skin bumps and rashes that come and go) and he said that Lots of people can have these issues and it is not specific only to crohns. He said lots of people with Fibromyalgias and Chronic Fatigue syndrome have these issues too. He did say that he was Not a gastro though, and the Crohns can only be diagnosed by biopsy really. Other wise there is no way to know.

Sorry you are feeling so horrible. Can you use a heating pad at all? I use my 24/7 usually. It is my only vice really for the pain...









I think sometimes I would rather have a bad diagnosis than no diagnosis at all. Four months of pain and I'm tired of explaining, researching, going to Dr appointments, and at the same time dealing with the symptoms. And don't get me started on the disappointment of inconclusive tests. Thankfully I don't work.

My IBS has never woken me up before. Things are different now.
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