5 yrs. still not sure

[scrapnteacher]

Diagnosed with IBS in 1997 while pregnant with my son, that was only a minor issue that I would rather be dealing with now. In 2007, I had my first attack of ischemic colitis. I've had 3 additional attacks as well as having a separate event of severe pancreatitis due to gall stones. I changed GI doctors in 2010 after having 6 colonoscopies in 3 years and no improvement or answers. Two weeks after meeting the new doctor, I had the final attack of ischemia which resulted in a resection a week later. Surgeon took 24 inches and said I should be much better now. Still no confirmed diagnosis. I was great for a year, the last six months I've slowly been having symptoms again but no full blown attack. Pain has increased over the last month, so doctor is doing a scope tomorrow suspecting more ischemia or chrohn's. Not that I want that diagnosis, my youngest brother has had it for 16 years, but it would be nice to know what is really going on in there once and for all.

 

[skippy111]

Hey Welcome!

Yes, uncertainty is never a good thing, in order for the Dr to treat you they have to identify what is going on.

I am glad you got a new DR and hope they find out what is going on, keep us posted.

Skippy

 

[Angrybird]

Hello and welcome to the forum :bigwave: Sorry to see you still waiting for a diagnosis even with having had surgery - did they not biospy what they took out and where was this removed from, the small or large bowel? Have you been given any meds at all to help?

I really hope the scope tomorrow can give you the answers you need, please keep us updated on how you get on.

AB
Xx

 

[scrapnteacher]

It was large colon resection, I'm sure they did biopsy but don't remember the results so must have been ok. Today's scope showed no Chrohns or ischemia - thank goodness. I'll know biopsy results in a week. I have meds for colon spasms and pain meds but that is all for right now.

 

[scrapnteacher]

Well, I'm coherent now after yesterday's test. I was amazed with a 2 pm appointment I was not hungry all day. Good news and bad news - good news is he didn't find any signs of Crohn's or ischemia and the resection area looks great. Bad news, he still does not know why I'm symptomatic. He sent off byopsies and recommended I check in with my GYN. My mom did have to have a hysterectomy because of her issues, maybe that's it for me too. We'll see.

 

[Angrybird]

One thing that's pops to mind is bile salt absorption, as you have had a good chunk of bowel removed you could now be having issues with this. For ages the docs thought my mum's partner had crohns because her symptoms practically mirrored mine but it turned out to be this, can't hurt to ask your doc about it.....

AB
xx

 

[scrapnteacher]

Thanks, I've never heard of that but I'll check into it especially since I no longer have a gallbladder either.

 

[carrollco]

I have bile salt malabsorption. *shudder*

From: http://en.wikipedia.org/wiki/Bile_acid_malabsorption

Bile acid malabsorption is common in Crohn's disease but not always recognised. Most patients with previous ileal resection and chronic diarrhea will have abnormal SeHCAT tests and can benefit from bile acid sequestrants.

They put me on Cholestyramine but it drove my triglycerides to over 1200. Thought my doc was gonna faint on the spot. I'm off it now and still have to put up with the diarrhea as well as bile malabsorption.

 

[scrapnteacher]

Thanks for the info and website, I did some more research last night. Sounds like that could be an explanation. I was lucky enough to get into my GYN today, so we'll see what he says.

Every time I have a scope or er trip with pain med via iv, I'm feeling much better for a while, why is that? It makes me feel like I'm crazy and this isn't really a problem except in my head. Rather unnerving.

 

[carrollco]

I dunno, but it happens to me, too. I metabolize pain medication very slowly--don't know if that has anything to do with Crohn's. For example, I have this back problem that can sometimes be associate with Crohn's. It's called spongi something. Anyway, a disc collapses in my lower back causing me HUGE pain. Since I have Crohn's I can't take NASIDS (sp) anti-inflammatory drugs because it makes me bleed. So, I have to take Tylenol. Tylenol did not TOUCH this pain. They gave me Vicodin. I can take two in the evening and it kills the pain for almost 24 hours. I have no idea why, but it does. :dance:

 

[scrapnteacher]

Thanks, makes me feel a little better that I'm not completely crazy!

 

[Gculk]

I'm not completely crazy!

Are you quite sure?



Any clotting disorders, heart disease in your family? There is a possibility that it might be ischemic colitis again, assuming you have a clotting disorder or vascular abnormality. Might be worth asking your doc for clotting tests.

Hopefully it's something like bile salts as mentioned above. Anything treatable really.

Nathan

 

[scrapnteacher]

I do have homozygous MTHFR which is a mutated gene that causes me not to clot as quickly, trust me I've been checked for every hematological abnormality there is! When I had my 2nd ischemic attack, I saw a hematologist who literally had 21 tubes of blood drawn to test for all of this stuff. I take Folbic for the MTHFR, but I've never had a bleeding issue and Monday's colonoscopy showed no ischemia. We'll see what my GYN says about the US I had today.


---signed, The Mushroom (my mantra - "just sittin' here in the dark")

 

[David]

Hi there and welcome to the forum I'm pleased that you joined and appreciate you sharing your story. Would you be willing to elaborate further? Questions I have:

1. Did I ascertain correctly that your brother has diagnosed Crohn's Disease?

2. Where specifically is your pain?

3. Do you have ANY other strange, chronic or recurring symptoms? They don't have to be digestive related, all recurring and chronic symptoms are clues.

4. I realize you've had lots of colonoscopies, but have you ever had any tests to evaluate your small bowel? Small bowel follow through, MRE, Pill cam, etc?

5. Do your blood tests always come back normal? If not, what is off?

6. Have you ever had fecal lactoferrin or fecal calprotectin tested?

7. Are you on any medications? You mentioned IBS. Did they by chance put you on Lotronex?

Again, welcome!

 

[scrapnteacher]

Wow, Lots of questions! Here goes...
1. Yes, my half brother was diagnosed 16 years ago at age 15.
2. The predominant pain tends to be the LLQ, however; it can be anywhere in the lower quadrants..
3. Symptoms have been the abdominal pain and diarrhea, I have started getting migraines again which I have not had since I was a teen. Additionally, the last month or so, I've had more heartburn/indigestion than I had been.
4. I've only had the hemi-colectomy, colonoscopies ad nauseum, ct's, and MRIs. I had an ultrasound this week to rule out gyn issues, and there were none.
5. Blood tests come back fine except my MCV level was high in March and again last month.
6. If I've had those tests, no one has told me. I know I've done a couple of fecal tests in the last several years, but I do not know the specific tests that were run.
7. The only GI medication I have (other than vicodin) is Bentyl for spasms. I have Nexium for heartburn that I take intermittently.

Thanks for asking so many questions. I've really felt like I was crazy all day after my gyn doc call with the results of the ultrasound. Having my colon share with me how much it dislikes everything I eat this evening didn't make me feel any less crazy. I'm supposed to see my GI doc again in 3 weeks.

 

[David]

How many of these have you had?

Weakness, tiredness, light-headedness, rapid heartbeat and breathing, pale skin, sore tongue, easy bruising or bleeding, including bleeding gums, eye problems, stomach upset, weight loss, diarrhea, constipation, tingling or numbness in fingers and toes, difficulty walking, mood changes or depression, memory loss.

 

[scrapnteacher]

All of them at one time or another except the sore tongue, weight loss (I wish), difficulty walking (though I've been a clutz all my life, but not medically related), and memory loss.

 

[David]

With the elevated MCV and all those symptoms, have they tested you for vitamin B12 and folate deficiency?

 

[scrapnteacher]

The b12 has been checked and came back normal. I have added a b12 on my own anyway. I take Folbic daily anyway for my MTHFR which includes folic acid and b vitamins.

 

[David]

Do you know what the specific number was for the B12 when it was last tested?

 

[scrapnteacher]

No, I don't remember. It was within the normal range. I think I'll call on Monday and get those numbers and mention the enlarged red blood cells again. based on current symptoms, probably should have it checked again.

 

[David]

Sounds good

The problem with, "within the normal range" is you can be at the low end of "normal" and thus be deemed normal but in fact be deficient. The current reference range for serum B12 is terrible. This paper explains the problem pretty well.

 

[scrapnteacher]

Thanks for the info, I'll read before I call Monday!