Undiangosed bowel disorder since 2007

[Astrid]

Hi,
I just signed up for an IBS forum too, since that is the most benign thing I may have, so I don't know if I'm welcome here. I am not diangosed with any bowel d isease, IBS, IBD or otherwise, so I am looking fo rsupport maybe in all the wrong places. My symptooms do not sound lik Crohn's if I check those out, so I'm more than happy to leav eif you guys don't want me here.

Anyway, here is a brief history. I went to my doctor with diarrhea in 2007, but was pretty much dismissed - told to drink more water and stuff because doc thought I had constipation instead. I live in an institution for mental health reasons, and the nurses said sinc emy blood tests were normal (don't know what they tested for), I was making a fuss out of nothing. Didn't dare to go back to doctor till late 2009, and was prescribe Movicolon (Dutch brand name, generic is macrogol+electrolytes, have no clue what the U.S. brand name is), again because I was supected of having idiopathic constipation. This worked for a short while, but I kept having bowel cramps and stuff, that do not meet the Roman (sp?) criteria for IBS (do ot get better with BM, do not change with consistency or frequency of BM). I finally went back to doctor a few weeks ago, and was put back on Movicolon an dlater a laxative to be used anally. The laxaative was stopped because it gave me diarrhea but didn't help the constipation, but I still take the Movicolon.

Other symptoms include acid reflux (tested negative for stomac ulcer bacteria), stomach cramps, severe fatigue, pain all over the body, cognitive overload, and a host of other unrelated symptoms. I was diagnosed with vitamin B12 deficiency a few weeks ago, and first prescribed tablets, but I asked for shots because I can't seem to take the pills, and read anyway tha tunless you're vegan (I'm not) B12 deficiency can only result from absorption issues. No-one figured out why I have B12 deficiency, or why I have these bowel issues (other than idiopathic constipation). I was just referred to a gastroenterologist, but I fear they will not take my symptoms seirously because of the host of unrelated stuff. Again, I do not want to say I have IBD, I probably don't judging from the symptoms, but I do want to know why I've had this diarrhea/constipation/cramps/fatigue/B12 deficiency/etc. for so long.

 

[Bld]

You are definitely welcome here! There is even a dedicated undiagnosed forum so don't worry about being unwanted

Hopefully the GI will be able to work out what is going on for you. They have to take your seriously with the symptoms you have described.

 

[Astrid]

Thanks for the welcome. I know there is an undiagnosed club, b ut since my symptoms do not match those of Crohn's really, I thought I would not be wanted here. My nurse sent a list of all my symptoms to the GP, who will hopefully take me seriously. I am back for a check-up with her on Tuesday (also getting my second B12 shot then), but it may take forever before I can see the GI.

 

[Bld]

If you poop, you belong! oo:

 

[Astrid]

Lol.

 

[Trysha]

Hello Astrid,
I agree with Bld, if you find the forum helpful then you do belong here with some of your symptoms.People with Crohns can have different symptoms, it can be an elusive diagnosis.
It is very good that you will be seen by a gastroenterologist since they are best at ordering the appropriate tests for IBD.
Once these tests are done
then some kind of therapy can be started for you.
Feel better soon.
Please keep us posted as to how you get on and what the gastroenterologist decides for you.
Hugs and best wishes
Trysha

 

[Astrid]

Thank you Trysha. I will definitely keep you posted.

 

[David]

Hi Astrid and welcome.

Actually, your symptoms do in fact point to IBD as a very real possibility. Make sure that the GI takes you seriously and performs all the necessary tests. Don't let them push you out the door, get the level of support you deserve.

Oh, and what was your specific B12 level? You're correct that there is a chance that oral forms of B12 will not be sufficient for you. That's not definitely the case since we don't know the cause, but it is indeed a possibility.

 

[Astrid]

Hi David,
Thanks for the information. I don't know what my B12 level was. At a previosu test about half a year ago it was 120 mMol/L, which my previous doctor said was not low enough to cause symptoms (but I read on a Dutch B12 deficiency site and in several studies I have access to through my university that anything below 150 mMol/L is too low and that a value up to 250 mMol/L can be abnormal). I have a new doctor now so I don't know whether my B12 dropped or she simply has a different perspective to the previous one. By the way I also had iron deficiency (not hemoglobin) for which I took supplements until they figured out the B12 deficiency. Now my iron is probably back to normal. I will have to get my most recent lab results as people at the B12 site have been requesting to look at them too.

When I see the GI doc I will definitely ask them to take me seriously. My GP actually thinks it's my shunt (for hydrocephalus) causing troouble with y bowels, but I've never heard of that except in rare cases when the shunt is failing it causing constipation. But I'll see when I see the GI doc.

 

[David]

Are you sure that the B12 came back as nMol/L rather than pmol/L? I just want to make sure we're getting the conversions correct.

 

[Astrid]

I don't know. Could be pmol/l. I may've misread it as the p and m are almost the same in braille (I read braille since I'm almost totally blind).

 

[Trysha]

Hello Astrid,
Has anyone told you what a courageous person you are?
Here you are coping with an as yet undefined GI problem which resembles some of the
symptoms of crohn's and you have so many obstacles to surmount.
It is really good to have you as a member of the forum and uplifting to the spirits .
Hopefully you will soon receive the GI and medical help you need and be on the road to proper care and treatment..
Hugs and best wishes
Trysha

 

[David]

Ah, ok I'm 98% sure it is pmol/L but wanted to make sure the Netherlands didn't have their own system and I'd lead you astray. The reason I asked is my brain works in conventional units which is pg/ml. To covert your reading last year to pg/ml I divide by the conversion factor of .738. That comes to 162 pg/ml and here in the west and anywhere that doesn't think that the earth is flat, that means you are and were very deficient in vitamin B12 and absolutely, 100% should be supplementing, likely with injections. This is likely, at least in part, the cause of your fatigue and various other symptoms. That your initial doctor didn't think that number warranted supplementation is incompetence at best.

Have they tested to see if you are producing sufficient intrinsic factor? That can be a cause of pernicious anemia. And of course Crohn's Disease is a common cause of vitamin b12 deficiency as well.

If the GI doesn't take you seriously considering your B12 deficiency then he's a terrible GI. But I bet they will and will do what is necessary to find out what's going on.

 

[dannysmom]

Hi. You are most welcome here! I know becuase I am welcome here as a mother of an undiagnosed child. The support is fabulous. Reading through this thread, I see that there are many health issues you must deal with... I imagine that is very frustrating. Hopefully the GI will help! Good luck!

 

[Astrid]

Hi, this is a late reply but thanks for the comments. I wanted to say I'll see the GI doc the 21st of this month. I do hope the doc will take me seriously re the B12 deficiency and symptoms. My psychologist suggested I should also be tested for Celiac (I know it's weird for a psychologist to suggest medical testing, but I'm interpreting it as lay advice) as this can cause many of my symmptoms and signs too including B12 deficiency. She's also going to get my psychiatrist on my side re treatment for the B12, as I'm getting fewer injections than the Dutch guidelines recommend and my psychiatrist might be able to convince GP to get me the proper treatment. (I looked up the guidelines and didn't want to tell my doctor upfront she's not following them, so when we were discussing my physical symptoms anyway I mentioned it to psychologist, I know this is rude but well.)