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At my wits end with the pain and diarrhea - need help


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#1 Somuchpain

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Posted 18 September 2020 - 02:37 PM

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This might be a long post, but I don't know where else to turn.  Please bare with me while I try to explain my condition as concise as possible.

 

In Fall of 2017 I had a "gallbladder attack" and was taken to the ER where I had an ultrasound done.  Gallstones were apparently found and I was told I needed it removed.  A week later I had the surgery, and was pain free for a while.  About a month after that I had diarrhea after meals, so I returned to the surgeon who put me on Questran (I'll go into more detail about this later).  It seemed to work fairly well for the next few months.  Then the pain started when taking it.  I returned to the surgeon once again, and was told that I was one of the "rare" cases of BAD (bile acid diarrhea) from gallbladder removal.  He told me to keep playing around with the dose amount.  I did, and I eventually stopped taking it period because I could not seem to ever get the dose right to stop the diarrhea and not cause severe pain.  My only answer was to just not eat.  Down to 1 meal a day (supper - so that I could be at home and close to a bathroom).  Obviously this has been hell for me.  I cannot go out to eat with family.  I cannot go on vacations.  I cannot live a normal life.  For fear of being in severe pain, or pooping my pants...or both.  

 

Fast forward to Fall of 2019, I had some super bad episodes of this.  So I decided to see a specialist - a gastroenterologist.  He had me submit all kinds of labs from urine, blood and stool samples.  I was diagnosed with C-Diff.  After a round of super expensive antibiotics, I was retested and was cleared of the C-Diff.  The frequency of the bathroom trips have lessoned since then.  Usually only happening after, or during a meal.  These trips...if I make it....result in what feels like my insides have been in a grinder, turned to molten metal, and exiting my butt.  It hurts....severely.  This repeats 2-4 times within the next hour, getting worse each trip. Afterward I'm hurting from my stomach to my butthole....burning pains.  It's horrible.  

 

So this year I have been seeing the Gastro, my general PA, and the surgeon about these issues frequently.  I have had:

 

2 CT scans that showed a slightly enlarged appendix

1 nuclear scan to check the Sphincter of Oddi and bile secretions of the liver - came back normal

Endoscopy - normal

Colonoscopy - normal

Surgery to have appendix removed

Usual labs - urine, blood, etc. - all normal

 

They are still running tests and trying to figure this whole thing out.  Meanwhile I'm in agony, daily.  

 

It is blatantly obvious I have BAD.  This is fairly easily treated with Questran or Welchol (bile acid sequestrants).  They work for sure.  They will stop the diarrhea from happening absolutely.  The problem is the pain associated with taking them is horrific.  And entirely different kind of pain.  It's localized directly on my stomach area.  Feels like a 300 pound dude is doing a 1-handed handstand on that area.  So much pressure and pain.  It is unbearable.  

 

Welchol is a big pill that is very difficult to cut (round, and slippery), but Questran is a powder so alot easier to measure the dosage.  Here is the main issue with this medicine.  It's all about finding the "right dosage".  Obviously taking the entire packet results in horrific pain.  So, you have to be super careful on how much you take.  The issues arise due to a few variables:

 

1.  How much of the packet to take

2.  How long before eating should you take it

3.  What is eaten can affect how much you "should" take

4.  You are supposed to take it 3-5 hours before/after other meds due to it's ability to sometimes cause those meds to not work.  

 

If I take too much, I won't poo, but I'll be in massive pain for hours and hours.  If I take too little, I will poo (uncontrollable), and be in massive pain (the burning kind from stomach to butt) for hours and hours.  

 

So I tell my doctors this, and they put me on IBS-D medications for pain.  I've tried Dicyclomine, Amitriptyline, Librax....and none of them help.  They make me feel awful, and do nothing for the pain or the diarrhea.  I tell my doctors this, and they just kindof throw their hands up, saying "well, they should work".  "Keep taking them and they should work."  

 

I mean these meds aren't even supposed to help with BAD at all.  They do nothing to touch the pain associated with the Questran - only thing that can stop the BAD.  They are designed for pain associated with IBS-D.  I'm not even sure if my pain is the same as IBS-D pain.  It is either from BAD, or from the Questran.  So I'm so confused at this point, as nothing has worked.

 

 

Except ---

 

 

A week before my surgery, the surgeon apparently felt bad for me going through all of this pain, and wrote a prescription for Hydrocodone.  So I took that the week proceeding my appendix removal surgery.  Amazing!  I was finally able to not have ANY pain.  Did not have to take Questran at all.  No diarrhea, no pain.  I used that week to finally conduct alot of business I had neglected for months because I'm afraid to leave the house (thankfully I work from home).  Finally I had a break from all of the hell I have been experiencing.  

 

After my surgery, I was given oxycodone for the surgery pain.  This worked similar to the Hydrocodone, although I think it was way too powerful with respect to my regular issues (aside from surgery pain).  It made me sick feeling most of the time, and I ended up getting horrible constipation (entirely different kind of pain - stabbing pains all throughout your abdomen - moves around a bit).  Thankfully taking Miralax helped me go to the bathroom, which relieved that pain.  But, again, for the next week, I was relatively pain and poo free.  Aside from having to baby the surgery wounds, I was able to live normally again.  

 

 

So, 2 weeks of narcotic pain medications, then back to the normal routine.  I tell my Gastro this, and he just tells me, "We don't prescribe pain pills."  I mean, I understand.  I do.  However, what am I supposed to do at this point?  I've been going through hell for 3 years now, spent tens of thousands of dollars, tried all kinds of different medications, waited on appointments, and procedures with no hope of ever getting better or finding a solution.  And by chance I find something, and it's not something that is allowed??  

 

I end up doing all kinds of research on IBS-D, BAD, and the "opioid crisis".  

 

2 of my doctors excitedly offered me a relatively new medication.  They were sure this was the answer to my issues (this was before my surgery).  Viberzi.  Viberzi is supposed to treat diarrhea AND pain.  It is a controlled substance that works on opioid receptors - thereby making it "almost" an opioid.  According to the reviews, it works great!  BUT......both came to the realize that an update was made in 2017 that Viberzi cannot be prescribed to patients missing their gallbladder for fear of pancreatitis.  Understandably, they immediately said, "Nevermind, we can't do that one."  Oh, but it's funny how BOTH (my surgeon, and my general PA) seemed "excited" when offering it.  Almost like they had just been sales-pitched about the medicine, and were passing that sales-pitch over to me.  Got me excited as well, then that fell apart.  Viberzi is a schedule IV med.  

 

So I just do not understand the issues.  At least 2 of these meds they put me on/suggested are controlled substances (Librax and Viberzi).  One is an opioid-type, one is a benzo.  Other meds are anti-depressants.  All of these meds come with severe risks, addiction potentials, withdrawl side effects, etc.  But they are fine offering these.  But the one medicine that ACTUALLY works, Hydrocodone (I even suggested trying Codeine....something weaker.....anything), and it's a big NO-NO.  

 

I believe this is due to the entire political climate associated with the "opioid crisis".  The reluctance to prescribe these medications to patients in dire need of them.  At least on a temporary basis while more tests and procedures are being done (and waited on - takes weeks to months) to further determine the cause of the problems and zero in on a real solution.  I feel it's borderline abuse of the patient honestly.  

 

For someone like me, who is in fact a tee-totaller (I have never had alcohol or any drugs my entire life - believe it or not), I do not want to be on ANY medication....much less something like a narcotic.  But at this point in my life (43yo), who has lost the last 3 years of my life pretty much due to this, I am at my wits end.  My patience is gone.  I'm sick of waiting/hoping for something to help me.  We found something that works, but it's off-limits.  It's ridiculous.  I'm frustrated, angry, depressed, in pain, and tired of it all.  

 

 

As of right now, I am supposed to be gathering yet another stool sample for testing, and my gastro is supposedly going to be referring me to a "pain clinic".  No idea what that means really.  I've never been to one.  Maybe they can help.  But see, that's how this goes.  Still in pain, still stuck at home....doctor says, "let's try this...", I do as commanded, wait, suffer, wait some more, suffer some more, and keep waiting for the result, next appointment, return callback, etc.  The cycle just keeps repeating.  I'm no closer to a resolution than I was 3 years ago.  Letting that surgeon remove my gallbladder ruined my life as far as I'm concerned.  I didn't know.  I had no idea this was possible.  But here I am.  Hungry, afraid, and hopeless.  



#2 bushja1

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Posted 18 September 2020 - 05:09 PM

I'm surprised they never suggested Lomotil or Motofen.   Both are like non prescription Imodium just a little stronger.  They are also on the controlled substance list but much lower than Hydrocodone.  I've use both for years and my doc never mentioned any addiction problems.  I have no idea if they are suitable for someone with no gallbladder. 



#3 Somuchpain

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Posted 18 September 2020 - 05:59 PM

I'm surprised they never suggested Lomotil or Motofen.   Both are like non prescription Imodium just a little stronger.  They are also on the controlled substance list but much lower than Hydrocodone.  I've use both for years and my doc never mentioned any addiction problems.  I have no idea if they are suitable for someone with no gallbladder. 

 

I'm not sure either.  If I had to guess, immodium, as I have told them, causes severe stomach pain and I cannot poo for days.  No idea if those 2, or the Viberzi for that matter would affect me the way immodium does.  I have another appointment coming up.....Nov 4th (see? this is what I'm talking about....the timeframes of waiting with no immediate help), but I will mention these 2 meds and ask more questions.  Thanks for suggesting them.  



#4 bushja1

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Posted 19 September 2020 - 09:09 AM

I can't handle Imodium either.   I get severe intestinal pain.   Plus,  for me it doesn't stop the D.  Hopefully,  maybe your doctor will let you try the two I mentioned.   They supposed to be stronger than Imodium,  but I don't get the pain like I get with Imodium. 







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