MCC/IBS & everything else....

[fifthofanickel]

Hello Everyone;

I haven't visited here for awhile, & tho't I would give you all an update on what's been happening w/me.

First off, I fired my GI guy...On the last colonoscopy I had, he told me I now longer had MCC, but had IBS. All my tissue samples were neg. according to him. This was in 2005. He told me I could gradually go back on gluten which I did, w/no problems..

Then last fall, ended up in hospital w/severe abdominal pain, constipation (after taking several Immodiums), bladder infection, & found I had mild diverticulitis. The CT scan also displayed a small mass on my pancreas. I had the contrast CT scan repeated after 4mos. w/no change..Thank goodness for that. But the "D" came back w/a vengence. Finally after putting up w/that for about 2 mos, as the holidays were approaching, I went back to the GI guy.

He told me I was having a flare of my MCC..Imagine my surprise & disdain at hearing this. My hubby & I both said "WHAT"???? Then we repeated back to him what he said in '05...He said he didn't say that, he only said I wasn't in a flare at the time. Yikes!!!! I could have hurt him bad.... So he put me on Prevalite, which didn't work at all. By this time it was March. Then he tried me on Entocort, which I had a reaction to. So the "D" continued.

He said on the third visit, he was sorry but he was going to try me on a Leukemia drug, which you know lowers the white blood cells, which opens up all kinds of infections. My face was getting redder & redder by that time. I said no way was I going to do that..So out the door I went.

Tried gluten free for about 2mos. to no avail...By this time it was June. I may have gotten some of the timelines wrong, but I did give the GF a good try. When I went GF in 1999 I believe, I had relief w/in 3wks. Anyway tried natural products to include Super Seed w/all kinds of sprouts, & a green food powder. Well wouldn't you think I would know better??? That stuff had all my trigger foods in them..Sheesh!!! So broke out in red raised areas, as I had allergies going from some of them I'm guessing..

Got to an IBS site & read a 47pg. thread on the benefits of Calcium Carbonate. Thought what have I got to lose? I've been taking it for about a month now, & the "D" is gone. along w/the bloat & nausea. I'm continuing w/the gluten & have added fruit to my diet along w/some no-no veggies, & so far so good. I'm hoping this will control both the MCC & IBS & whatever else is going on in there...

What an experience...I don't ever want to go thru all that again. I'm starting to get some energy back, even w/fibromyalgia & CFS in the works. Still have to pace myself w/everyday tasks, & take frequent rest breaks. This hot/humid weather doesn't help, that's for sure.

Sorry this is so long, but maybe some of you may be interested in my tale of woe...I would add some of my life happenings, but this is already lengthy. I'll do that soon.

Have a great weekend & a "Norman" one
All good Blessings to you all;
Penny

[barbaranoela]

Hiya Penny-----well U certainly have had a time of things~~~

I left my first GI cus he didnt KNOW from beans-----kept showing me the medical book where the story ran about the GI who detected a symptom called MCC--
And I said *so what*---what can U do?? UFF

Anyway I did want to tell U that I also had very bad reactions to ENTOCORT!!!---what a disapointment that was---but thankfully my new GI got me cleared up and so far(with a flare here and there) I can enjoy life!!

Sending U big for a get better time!!!

Luve Barbara

[thedell19]

Hey Penny-

I have been taking the calcium carbonate for some time now and it helps. What brand do you take? I find the Caltrate works the best! I am glad you found something that works well for you!

How long have you been GFCF

[fifthofanickel]

Hey Barb; Good to "see" you again. A big hug to you too. The Entocort thing was an experience for me. Glad I got off of it..Gave me anxiety attacks. And a good thing you found another GI Guy. I'm going to go to my FP. He's in a clinic setting & there is a FP guy in there that specializes in the GI system. I think I'll be better off w/him. Going to give it a go anyhow. The "poophead" GI person I went to said I wouldn't need another colonoscopy for 10yrs. How often do you get one? Not that I would look forward to another one, but I think every 5 would be in order for folks like us.

thedell19; I'm no longer gf. I did start that in 1999, but went back on gluten in 2005. Doing well.Hopefully I will continue to tolerate being back on gluten as the stuff is soooooo expensive, & I'm really not wealthy retired. I don't meant that sarcastically, it's just the facts. I too, take Caltrate (chewables) as I have GERD & it doesn't upset my stomach..My med sensitivities go into play w/non chews..So I take most of my supplements by liquid or chews. Right now, I'm off all Supplements & vitamins, except for my probiotic. They all have magnesium in them, & I can't take much of that at all. As soon as I straighten things out w/my food triggers, hopefully I'll be able to eat a more balanced diet, & get along w/just a multi-vit. Something has to work...lol...

Have a good one...
Blessings;
Penny

[barbaranoela]

Penny------I am due for a colonoscopy NOW~~~~BUT---and this is interesting----my ENDO said--*No OSCOPY until your thyroid levels are EVENED out!!!! cus going under anesthesia--with this issue can cause serious problems!!!!!

How do U like that!!!! Why, I luve her even more---

I was told every 5 years~~~~~ actually I am late for that date last one was 7 years back~~~~but whose counting???

Hubby goes for one next week---wish they would come up with a better way to do this look see~~~~~

Will U be drinking that gallon of gatorade mixed with some powdery stuff??
Thats the new way----from what I understand!!!!


Barbara

[fifthofanickel]

I had mine done 2yrs. ago & drank the lite prep. I think 6oz of that salty tasting junk. Since I'm prone to "D", he had pity on me & I didn't have to go the gallon route..Thank goodness for that...lol..Anyway it did the job. Cleaned me right out...lol..

They do have the camera thingy you can swallow, but some articles I've read, say if anything is found, you have to go the manual way anyway, sooooo I tho't why do it twice, if I had polyps that needed testing, etc.

Good luck to your hubby, I'm sure it will go well for him, it's the prep that is the worse....Glad you have yours postponed for a bit. Piece of luck there....lol

Have a good one;
Blessings;
Penny

[tex]

Hi Penny,

It's good to see you posting again. I'm glad to hear that the Caltrate is helping - several others here have had good results with it, also. No one seems to know why it works, but there is definitely more there, than meets the eye, because too many people have been helped by using it.

I've been mulling over what I read in your initial post in this thread, about the fact that you tried the GF diet for a couple of months, without any apparent improvement - are you aware that it took many of us about a year, (or longer), on the GF diet, before we were able to successfully eliminate our symptoms. Just because a diet, (or a medication, for that matter), brings relief quickly the first time it's tried, does not mean that it will work the same way, for subsequent events. Many here can attest to that, for both the diet, and certain meds, too.

If you want to eliminate any question about whether or not you're gluten sensitive, a stool test for gluten sensitivity, at Enterolab, in Dallas, is the most reliable way to answer that question, (in fact, it's the only way to detect it for non-celiacs), and that test will answer the question, once and for all.

If avoiding gluten initially eliminated your symptoms, then you are almost certainly gluten sensitive, and even though you might be symptom free at times while ingesting gluten, that does not mean that you may not still be accumulating some damage to your intestines, because gluten sensitivity is almost always a permanent condition, once it's triggered.

Having said that, (that gluten sensitivity is permanent), please note that there are now a number of authorities who are beginning to warm to the idea that gluten sensitive individuals, (even celiacs), may be able to reintroduce gluten into their diet someday, if their gut is completely healed. The jury is still out on that topic, but there is no denying that some individuals definitely experience spontaneous remission, and are able to ingest gluten, without any apparent symptoms, and without any treatment, (meds or diet), so it's certainly possibly that you might be one of the lucky ones.

Also, I'm a firm believer that regardless of whether or not one is gluten sensitive, and whether or not she or he is on a GF diet, or taking meds, or whatever, the final verdict lies with the way our digestive systems perform. If we feel good, don't have any significant symptoms, and our BMs are normal, then there's no reason to be concerned. If any one of those three items is not true, however, then we are at risk for damage to our digestive system, especially if other digestive system issues are present to complicate the situation.

I'm kinda like you, in that after my symptoms from gluten damage got to be serious, I developed diverticulosis, (which eventually led to a stenosis in my colon, which had to be surgically removed, when it turned into a blockage. I suspect that those of us who have alternating C and D, are more likely to end up with problems such as that, than those who have only D, but I'm just guessing.

Thanks for updating us, and I hope you'll post regularly in the future. We learn a lot from the voice of experience, and we need to consider all the experience we can find, it we're ever going to lick this disease. I hope your progress continues, and you feel better with each passing day.

Tex