u/Mobile-King-3345

Hello folks,

I'm at the end of my tether. My life has been destroyed by this. I'd really appreciate you having a read of this to see if you might have some information that can help.

I was recently diagnosed with BAM and when I first took the medication, I passed a normal stool for the first time in a very long time. The utter relief was euphoric. I'd found the answer after years of struggle. It's a month later and nearly all my symptoms have returned as if I wasn't taking anything at all. The only difference is that my stools are a bit darker and urgency is slightly less pronounced. Yesterday I had 8 bowel movements.. Healthcare in Ireland is awful so I have months to wait before another appointment and am left figuring this out on my own again.

Has anyone experienced this and had any luck addressing it?

Medication:

2 Cholestagel 2 times daily (I take 2 with breakfast and 2 with dinner)

+

1 Question light sachet with main meal (I take this with lunch and sometimes add 1 cholestagel fort good measure)

History:

Pain increases with fatty foods, chocolate and alcohol. I struggle to put on and maintain weight. I sweat heavily at night.

My elastase was found to be under 200 a year and a half ago. I was put on Creon and experienced a significant improvement for the first time in over 10 years.. The impact of this medication didn't last. Over the last year I developed near constant back pain that feels muscular but isn't. I also experience sharp nervy pains behind my lower left rib.

A test 6 months ago showed that my elastase had recovered to 485. I was advised to stop taking Creon. My symptoms quickly returned though, even worse than before.. It was a disaster. I went back on the creon against my doctor's advice and my symptoms improved.

The only significant finding on my EUS were that the body and tail of the main pancreatic duct were narrow with minimal hyperechoic parietal thickening along its length (mild ductulitis). Also, small 5 mm cholesterol-type polyps in my gallbladder

One of biggest impacts on my life was the constant toxic gas. It made going to work or socialising torturous. A doctor put me on a course of rifiximin for SIBO (Small Intestinal Bacterial Overgrowth)

Within a week, the change was profound. The gas disappeared. My stools were normal for the first time in years. The pain disappeared. I had confidence in my bowels. I started putting on weight after being clinically underweight for years. I felt like a curse had been lifted. I felt almost.. normal. I started to contemplate travel for the first time in years. Relationships.. Life..

This gave me the confidence I needed to attempt to stop taking Creon again after disastrous results before. I did so successfully this time.. I could even open up my diet. Everything remained stable.. for a few weeks

Over the next month my symptoms gradually returned. I was trying to convince myself they weren't but it soon became undeniable. As the symptoms returned, my diet became more and more strict and all the weight I'd recovered began to rapidly fall away. The only thing I've managed to successfully be rid of was the toxic smelling gas.

I recently got the results back from a nuclear medicine test and was told I have Bile Acid Malabsorption. The medication is helping with bowel movement urgency and my stools are a bit darker but the pain and bowel movement frequency/quality is the same. (4+ bowel movements a day, mostly Bristol 5+ fluffy and frayed)

This week my back was really irritating me and I decided to see a physiotherapist to rule out anything mechanical. (I've also had a scan of the area which revealed nothing) He massaged the area a couple of days ago and my back has been worse than ever since..

1) Does sitting against the back of a chair cause you discomfort? Or having a bag in contact with the problematic area on your back?

2) Does your back pain get worse when you poke around or massage the muscles in that area?

3) Does it often feel tingly and numb? Like it's buzzing

4) Does the area sometimes feel itchy in the morning, not on the surface though. Deeper.

5) Does your musculoskeletal system get enflamed to the point where you're constantly trying to stretch/ crack your back and massage the area?

6) Can you irritate the area with movement?

7) When you eat too much fat, do you initially feel it more in the front than the back? Only for your back to get angry a few hours later...

I experience constant discomfort behind my lower left rib and in the corresponding area on my back. I assume I have Minimal Change Chronic Pancreatitis based on my history but I was recently diagnosed with Bile Acid Malabsorption after a nuclear medicine test and also temporarily responded to SIBO medication so I don't know what to think anymore. Doctor's are hesitant to commit to any explanation and just want to put me on SSRIs..

History:

Pain increases with fatty foods, chocolate and alcohol. I struggle to put on and maintain weight. I sweat heavily at night.

My elastase was found to be under 200 a year and a half ago. I was put on Creon and experienced a significant improvement for the first time in over 10 years..

A test 6 months ago showed that my elastase had recovered to 485. I was advised to stop taking Creon. My symptoms quickly returned though, even worse than before.. It was a disaster. I went back on the creon against my doctor's advice and my symptoms improved.

The only significant finding on my EUS were that the body and tail of the main pancreatic duct were narrow with minimal hyperechoic parietal thickening along its length (mild ductulitis). Also, small 5 mm cholesterol-type polyps in my gallbladder

One of biggest impacts on my life was the constant toxic gas. It made going to work or socialising torturous. A doctor put me on a course of rifiximin for SIBO (Small Intestinal Bacterial Overgrowth)

Within a week, the change was profound. The gas disappeared. My stools were normal for the first time in years. The pain disappeared. I had confidence in my bowels. I started putting on weight after being clinically underweight for years. I felt like a curse had been lifted. I felt almost.. normal. I started to contemplate travel for the first time in years. Relationships.. Life..

This gave me the confidence I needed to attempt to stop taking Creon again after disastrous results before. I did so successfully this time.. I could even open up my diet. Everything remained stable.. for a few weeks

Over the next month my symptoms gradually returned. I was trying to convince myself they weren't but it soon became undeniable. As the symptoms returned, my diet became more and more strict and all the weight I'd recovered began to rapidly fall away.

I recently got the results back from a nuclear medicine test and found I have Bile Acid Malabsorption. The medication is helping with bowel movement urgency and my stools are a bit darker but the pain and bowel movement frequency/quality is the same. (4+ bowel movements a day, mostly Bristol 5 but fluffy and frayed)

This week my back was really irritating me and I decided to see a physiotherapist to rule out anything mechanical. (I've also had a scan of the area which revealed nothing) He massaged the area a couple of days ago and my back has been worse than ever since..

Hello folks,

I'm at the end of my tether and would really appreciate your thoughts on this..

I experience constant discomfort behind my lower left rib and in the corresponding area on my back. It worsens when I expand my very strict diet of rabbit food. My stomach is in a constant state of upset with frequent urgent bowel movements and foul gas.. It's ruining/ruling my life.

My elastase was found to be under 200 a year and a half ago. I was put on Creon and experienced a significant improvement for the first time in over 10 years..

A test 6 months ago showed that my elastase had recovered to 485. I was advised to stop taking Creon. My symptoms quickly returned though, even worse than before.. It was a disaster. I went back on the creon against my doctor's advice and my symptoms improved.

Since then I have been working under the assumption that I have minimal change chronic pancreatitis and have been trying to get on with my very limited life.. My doctor's final advice was that I should go on SSRIs and I refused.

The only significant finding on my EUS were that the body and tail of the main pancreatic duct were narrow with minimal hyperechoic parietal thickening along its length (mild ductulitis). Also, small 5 mm cholesterol-type polyps in my gallbladder

One of biggest impacts on my life was the constant toxic gas. It made going to work or socialising torturous. A doctor put me on a course of rifiximin for SIBO (Small Intestinal Bacterial Overgrowth)

Within a week, the change was profound. The gas disappeared. My stools were normal for the first time in years. The pain disappeared. I had confidence in my bowels. I started putting on weight after being clinically underweight for years. I felt like a curse had been lifted. I felt almost.. normal. I started to contemplate travel for the first time in years. Relationships.. Life..

This gave me the confidence I needed to attempt to stop taking Creon again after disastrous results before. I did so successfully this time.. I could even open up my diet. Everything remained stable.. for a few weeks

Over the next month my symptoms gradually returned. I was trying to convince myself they weren't but it soon became undeniable. As the symptoms returned, my diet became more and more strict and all the weight I'd recovered began to rapidly fall away.

I am about to resume my creon intake but am left confused by the whole experience. How is it possible that Rifiximin offered temporary relief for my pancreas? Is the issue even my pancreas in the first place? I am completely lost and feel like I'm back at square one trying to figure it out by myself again..