Uncontrollable D Making Me Sad

[C-Girl]

I'm sorry to be such a downer all the time here, but I just can't vent anywhere else. I can't stop the D and it is getting so frustrating I don't know what to do!

 

I found Yet Another Doctor, this one seems more thorough. Going for an ultrasound tomorrow, had more blood taken, scheduled a colonoscopy (yay.) but she also put me on Bentyl and it's done just about nothing.

 

In theory the drug is supposed to get your guts to stop freaking out, but I still have D every time I eat, it's just not - OH MY GOD RUN! D, it's OH DEAR, I SHOULD GO NOW D.

 

I've cancelled my trip overseas because I simply cannot go anywhere where I don't have a bathroom within 20 feet. (or 6 meters, I've been practicing). It is making me profoundly depressed and I want it to STOP.

 

I've given up just about every kind of food, taken probiotics, taken enzymes, not eaten for three days (it doesn't stop even without food). I've taken Immodium - even that doesn't stop it, when it wears off it's 10x worse.

 

I feel drained, at the end of my rope. I just want to curl up in a ball and cry and cry and cry.

 

That's it. I just want sympathy. I know I've tried everything, and that's the most depressing part.

[moosemalibu]

((HUGS)) I have diarrhea still.. immodium helped temporarily. I find that I still have triggers in my diet.. not gluten.. something else. Do you keep a food diary? Perhaps you have some colitis happening... it's very common for microscopic colitis and celiacs to be diagnosed together. I actually might have to get a colonoscopy/biopsy too if mine doesn't resolve soon. My celiac disease titers are normal now so in theory I should be improving with the diarrhea too...

[C-Girl]

((HUGS)) I have diarrhea still.. immodium helped temporarily. I find that I still have triggers in my diet.. not gluten.. something else. Do you keep a food diary? Perhaps you have some colitis happening... it's very common for microscopic colitis and celiacs to be diagnosed together. I actually might have to get a colonoscopy/biopsy too if mine doesn't resolve soon. My celiac disease titers are normal now so in theory I should be improving with the diarrhea too...

I kept a food diary for four months, spent hours inputting it into a program that could correlate symptoms to foods. The only thing I got back was food is a trigger for my D! The doc suspects microscopic colitis. Of course there isn't much to be done about that either. That's frustrating. I just want to get back to normal, without any drugs or 20 trips to the toilet a day. Sigh. Let's hope we improve with the weather.

[moosemalibu]

Yeah... unfortunately if it is microscopic colitis the only treatment that I was informed about was the non-treatment approach and if it was bad enough you would be put on immuno-suppressants (which is something I want to avoid, personally). But it really depends on the severity of your symptoms. Let's see what the colonoscopy says... it may yield more information.

[icelandgirl]

I'm sorry to be such a downer all the time here, but I just can't vent anywhere else. I can't stop the D and it is getting so frustrating I don't know what to do!

 

I found Yet Another Doctor, this one seems more thorough. Going for an ultrasound tomorrow, had more blood taken, scheduled a colonoscopy (yay.) but she also put me on Bentyl and it's done just about nothing.

 

In theory the drug is supposed to get your guts to stop freaking out, but I still have D every time I eat, it's just not - OH MY GOD RUN! D, it's OH DEAR, I SHOULD GO NOW D.

 

I've cancelled my trip overseas because I simply cannot go anywhere where I don't have a bathroom within 20 feet. (or 6 meters, I've been practicing). It is making me profoundly depressed and I want it to STOP.

 

I've given up just about every kind of food, taken probiotics, taken enzymes, not eaten for three days (it doesn't stop even without food). I've taken Immodium - even that doesn't stop it, when it wears off it's 10x worse.

 

I feel drained, at the end of my rope. I just want to curl up in a ball and cry and cry and cry.

 

That's it. I just want sympathy. I know I've tried everything, and that's the most depressing part.

I'm so sorry...that's awful. Prior to my diagnosis and for a while after I had that. I literally was having it 20 times a day and it didn't matter what I did nothing stopped it. It was an incredibly stressful time. I couldn't even walk to the park down the street with my daughter because there's no bathroom. So...I don't have an answer for you. I wish I could help but wanted to send you (((hugs))) and say that I understand your frustration and depression.

[Adalaide]

You poor thing! I'm sorry you're dealing with this. I hope your new doc finds answers. I have nothing helpful to say atm but just thought I'd let you know you aren't alone. You've got us all on your side.

(((((HUGS)))))

[dilettantesteph]

You have my profound sympathy.   I know all too well what this is like.  There have been many times when I can't make it the 12 steps from this computer to the toilet.  I don't get enough warning to know it is coming.  It is so liquidy that when it comes out as I am hurrying to get there in time that it runs down my legs through my pants and I leave messes of it on the floor.  The only thing to do is take everything off and get into the shower, do laundry and clean the floor.  All that while feeling totally humilated as well as sick as anything.  Along with that comes the depression, lack of mental clarity, pain, blurred vision, extreme irritability, etc.  It is unimaginable by someone who hasn't experienced it.  My idiot former internist told me it was consistent with IBS. 

 

The only cure I have found is extremely strict control of my diet to avoid every possible chance of gluten contamination which includes growing as much as I can myself.  That part sucks, but the feeling better part is wonderful.  This time of year is very hard as the freezer empties out and the ground is still frozen.  I am trying very hard to find more things to eat that are available this time of year, with careful challenge/elimination dieting.  It is frustrating and discouraging.  It is also working.  I haven't made a big mess like that for some time now.  I don't know if what worked for me would work for you, but I'd be happy to share details if you are interested.  In any case, you have my sympathy, understanding and support.  Hugs.

[Renaye]

coffngrl - My mom had the constant D when I was growing up.  After many years of suffering, she went gluten-free and is somewhat better but also has colitis and diverticulitis.  I am glad that your new doctor is scheduling tests and taking blood.  Have you had a stool sample yet?  I am the total opposite - constipation but do take a muscle relaxer (hyyoscyamine) at times for stomach spasms.  Has anyone perscribed that yet?  I also have a positive p-anca which is specific for UC but obviously I can't have that and be constipated.  The chrohns and UC website has some good information/support on it.  Maybe that will help.  Try to think positive thoughts and meditate.  Good doctors are difficult to find.  Hope you get answers soon.

 

Renaye

[NoGlutenCooties]

That sounds positively dreadful.  I think the colonoscopy is important - just to make sure there isn't something really serious going on from a life-and-death standpoint.  Aside from that, the first thing that comes to mind is a severe imbalance of gut flora.  Sometimes just taking probiotics doesn't fix this - probiotics have a limited number of strains compared to what normally live in there.  And it can be difficult to get rid of the bad bacteria.  I had great results from taking Colosan (I've mentioned it elsewhere on here).  Colosan is a magnesium oxide powder that breaks apart in the intestines, releasing magnesium and oxygen.  You'd want to go easy with it because magnesium can help make you need to go - and you don't need that.  I found I could tolerate about a teaspoon a day.  The beauty of it is that the oxygen naturally kills the bad bacteria, which are anaerobic, while it feeds the good bacteria - which need oxygen.

 

About 20 years ago I had a stool test done - don't remember now just exactly what they tested for.  My "bad bacteria" number was at 12,000.  It should have been under 200.  After 6 months the bad bacteria was down to about 1200, and a few months after that they were back down to normal.  So it takes awhile, but it works naturally with your body.

[C-Girl]

That sounds positively dreadful.  I think the colonoscopy is important - just to make sure there isn't something really serious going on from a life-and-death standpoint.  Aside from that, the first thing that comes to mind is a severe imbalance of gut flora.  Sometimes just taking probiotics doesn't fix this - probiotics have a limited number of strains compared to what normally live in there.  And it can be difficult to get rid of the bad bacteria.  I had great results from taking Colosan (I've mentioned it elsewhere on here).  Colosan is a magnesium oxide powder that breaks apart in the intestines, releasing magnesium and oxygen.  You'd want to go easy with it because magnesium can help make you need to go - and you don't need that.  I found I could tolerate about a teaspoon a day.  The beauty of it is that the oxygen naturally kills the bad bacteria, which are anaerobic, while it feeds the good bacteria - which need oxygen.

 

About 20 years ago I had a stool test done - don't remember now just exactly what they tested for.  My "bad bacteria" number was at 12,000.  It should have been under 200.  After 6 months the bad bacteria was down to about 1200, and a few months after that they were back down to normal.  So it takes awhile, but it works naturally with your body.

Thanks everyone. I really appreciate the sympathy. It seems it took a day and a half for the Bentyl to take effect. Only now I have the headache, dizziness and lethargy as side effects that didn't show up initially. But at least I have had a few hours of rest from the toilet!

 

Nobody's tested my stool aside from the very first ones for parasites. I don't have c. diff, though.

 

I've been extremely diligent about avoiding gluten and any CC, so unless my body is responding to picogram quantities that might be still on clean aluminum pots and pans, then I'm at a loss. I'll find out next week where my IgG's are to see if I've been successful with avoiding gluten.

 

At least the ultrasound didn't find any massive tumors. We'll see what else they come up with next week.

[Fenrir]

I'm assuming that you've probably tried cutting out dairy, but I figured I would mention it just in case. 

[C-Girl]

I'm assuming that you've probably tried cutting out dairy, but I figured I would mention it just in case. 

 

Yes, dairy, soy, nuts, chocolate (ugh!), caffeine, alcohol. It would be nice to have something obvious to try though!

[dilettantesteph]

What are you eating?  Maybe something will jump out at someone.

[gilligan]

My problems aren't as severe as yours, but I'm still having issues after being six months gluten-free.  The dietician suggested I try the fodmap diet, and I have to admit it is working at this point in time.  It's restrictive, but I don't care as long as it's working.  The fodmap diet removes most sugars and carbs from your diet.  It wouldn't hurt to give it a try for a few days.  I hope your feeling better soon!

[C-Girl]

Actually feeling better today... I think it mighty actually be sugar that triggers the episodes. I ate some Peeps - who can resist those Easter candy displays? And they're gluten free! All they are is gelatin and sugar, right? Is previous episode was brought on by some gluten-free brownies a couple months back. At the time I was on fodmaps and was told chocolate had been added to the list of non fodmaps friendly foods, much to my distress. I guess I will stay away from sweets for a while, try to drown out bad bacteria with probiotics etc. and pray it never gets like that again... Though it was a fast way to lose 5lbs, I don't recommend it. Now, how find cash to pay for my latest round of doctor visits and labs... Yay.

[NoGlutenCooties]

Just wanted to mention that if the underlying issue is an imbalance of the gut flora, then sugar will exasperate the issue because the bad bacteria thrive on sugar.  (Not saying that you definitely have an issue with bad bacteria... just saying that your symptoms fit... including having more trouble when you ingest sugars.)

[MGR]

I am still new at this gluten free life, I also have UC and have found that gluten triggers it and the D is severe. The last time I was travelling and being new at this, I got glutened several times in restaurants who said ,that my food was gluten free... At the end of my trip I not only had horrendous D but also blood! I've been back on strict gluten-free for a month now but also still have D. I have been following a FODMAP style of diet and it seems to be improving. However, before I started this I also found that excluding corn, soy and dairy products also helped a lot.

In any case, I am thinking of you!!

[C-Girl]

(sigh) I do OK as long as I don't have to think about celiac, diarrhea, doctors or tests, but unfortunately as soon as any of those topics enter my conscious mind I get super depressed...

 

It's been 11 days since my blood tests - checking pancrease/gallbladder/inflammation and re-checking gluten antibodies - and not one peep from the doctor with the results. They've closed for the weekend, so I get to wait even longer now. I'm expecting them to all come back normal anyhow so I can have the über frustrating "IBS" diagnosis. To me, that means "I'm Baffled, Sorry".

 

It's been less time since the ultrasound, and I got those results. It apparently came back normal - no gallstones despite the stabbing pains which have since gone away. Maybe I had a stone and passed it, or maybe it was "all in my mind". Seems my brain is very powerful. Maybe I should try telekinesis.

 

I've had to stop taking the Bentyl since it was giving me raging headaches and sharp stabbing pains in my stomach. I've stopped eating pretty much everything except for rice and eggs - they've always agreed with me, and cutting out everything else has stemmed the tide. Well, that and taking an old Rx for percocet from when I broke my leg 2 years ago. That is 100% dependable in stopping my digestive tract from doing anything at all. Thanks to the single tablet taken Wednesday night, I haven't had to visit the toilet for anything but #1 for >24h. What a nice break. It's not a long-term solution, however.

 

Has anyone else used codeine off-label for D? I wonder if I just can keep my guts calm for a few weeks if they'd actually heal up and leave me alone for a while. Thoughts?

[cyclinglady]

Have you asked for a HIDA scan to check the efficiency of your gallbladder? I never had classic GB symptoms except for pain (passed out and I got diarrhea) and it was never where my gallbladder was located. It worked on and off since I was a teen. I finally hit 0% functionality and it got infected. I never had gallstones. It was the infection that got them to check further, actually a very savvy surgeon!

Just a thought.