Bowel Issues/Questions-Seeking Advice

Jay Q

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Aug 11, 2018
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PALS
Diagnosis
08/2016
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US
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LA
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Metairie
Shortly following a Christmas visit to the hospital for a UTI, I have developed a very turbulent gut. Initially thought to be a reaction to antibiotics, it has persisted for two months. Finished antibiotics in January. Essentially I have major gas rumblings daily that result in 2-3 toilet trips per day. Stools have varied from essentially normal to diarrhea to hard. Almost without fail each bowel movement big, small or non existent is accompanied by powerful gas release. Frequently, the BMs will produce minimal amounts But will expel gas without fail. Between BMs it often is difficult to pass the gas to try and relieve the bloated feeling. Visited a GI doctor familiar with ALS a few weeks ago. Said xray showed scattered stool but no blockage and prescribed magnesium citrate to try and flush or clean out old stool. Didn't produce immediate results but things improved for awhile along with miralax.

I am 3.5 years post diagnosis and essentially chair ridden each day so motion is obviously limited.

Sorry for being overly descriptive but wasn't sure how to adequately explain my issue. Seeking thoughts or advice from any who may have dealt with similar issues. Responses are greatly appreciated.
 

ShiftKicker

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Have you been tested for c.difficile? Your situation- those symptoms, plus a visit to a hospital and recent abx use seem like a recipe for an opportunistic colony of c.difficile taking up residence.
 

Jay Q

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Joined
Aug 11, 2018
Messages
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PALS
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08/2016
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US
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LA
City
Metairie
Sorry, forgot to include that stool sample tested negatively for c. Difficile but positive for Blastocystis for which Flagyl was prescribed and taken.
 

Jimi

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I've never had exactly what you are describing, but I can relate. I am paralyzed from the shoulders down. Live in my recliner. Things have changed over time. My stomach no longer has the muscle, so I now am a moderately trim person with a huge belly (quad gut). I now always feel kind of full. There is extra trapped air. It's never too uncomfortable, but never do I feel nice and empty like I used to. Always a mild bloated feeling that I have learned to get used to. I go to the toilet at the same time every morning regardless of if I have to go. I drink plenty of water and eat enough fiber. I have taken moderate doses of magnesium if I notice my stool is getting too firm. Also I have benefited from a good probiotic. Changes that I have made to my system take about a week or so to work. In the evening I will recline far back and bend my legs up to unweight my butt. Often times this position change gets rid of a significant amount of gas. Regular diet/water/toilet time has kept everything functioning properly, but I must always monitor and make small adjustments as I notice things trending. I feel pretty lucky that I have been able to train myself as it is much easier for my caregiver. Can't just jump up and get on the toilet! I have also found that stress or anxiety can upset my balance and effect my stomach/bowels. All the best, Jim
 

KimT

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Flagyl can mess up your gut. It sounds like you have a bad case of gastritis and possibly irritable bowel syndrome. They have new treatments for these conditions.

I got into a similar problem when I had constipation and developed an anal fissure. I had to find a way to regulate my BMs and take care of the gastritis.

The first thing I did was get a stool analysis that tested for just about everything. It was normal. Then I took GasX until I went back to the gastro. She prescribed a non-prescription supplement called IBgard. You can buy it on Amazon. It's enteric coated peppermint. I've had GERD for years so was scared of peppermint but I can tolerate IBgard. My doctor said it was a game changer for lots of her patients suffering from irritable bowel syndrome.

Drinking bone broth probably helped my gut as did collagen peptides.

I ended up getting scoped on both ends just because I've been taking a PPI for so many years.

GasX might help while you're waiting to be seen.
 

Vincent

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ON
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Barrie
Welcome to my life the past couple of months. I think i've had diarrhoea since November. Last week I was scoped both ends, No issues. Stool test normal. I have no idea what the next test is. If they figure yours out maybe that might help me too. On the plus side I fit into a suit that I haven't been able to wear for 10 years.
Vincent
 

Innovative

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06/2018
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FL
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Casselberry
I've found that many symptoms are due to medications. Most of the ALS doctors I see have recommend a very high protein diet. I've found that some high protein drinks cause serious constipation, and I can't take that. Taking (2) eggs every morning helps a lot.
 

KimT

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For constipation, Colace and Psyllium works great for me. I'm regular every day, sometimes twice a day. I also have been taking 1,200 mg of Magnesium each day but that was necessary prior to ALS because I started taking Remeron and that can cause constipation.
 

Doglady

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Jay-
You mentioned Miralax. I take that daily to compensate for another prescription I’m on that causes constipation. It doesn’t affect everyone this way - but I get bloated and have gas from the Miralax. Just a thought
Mary
 

nona

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Did I miss any discussion about probiotics?
 

Jay Q

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Joined
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Messages
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PALS
Diagnosis
08/2016
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While not discussed above, probiotics were added to my daily regimen. Probably helpful but not the solution to my issue. Lately I've been having small soft stool And gas in morning followed by liquid and gas expelled in afternoon and evening. Looks like I will have a CT to further explore partial blockage As cause.

Thanks for every one's input. .
 

affected

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We found movicol every morning (my Chris would say whether he felt he needed one or two sachets), with at least 500ml of water, before getting out of bed really worked for us.
I think there were two things - starting the day with it before anything else, and ensuring he was really well hydrated is at least as important as how much fibre you are getting.
Hope that helps :)
 

Nikki J

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movicol is not available in the US where the op is based. Miralax is similar but a little different. I think the difference is the sodium content. I am told by people who have tried both they find movicol a little better
 

Jay Q

Member
Joined
Aug 11, 2018
Messages
14
Reason
PALS
Diagnosis
08/2016
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US
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LA
City
Metairie
Thought I would give an update and again thank all those who replied and gave their thoughts.

Two and a half weeks ago I had an abdominal CT which showed a moderate amount of stool in my Ascending colon. With the thought that it was a cause of my issues, my GI doctor prescribed for me the liquid given prior to colonoscopy hoping that a good clean out would relieve my issues. So, two weekends ago I spent several uncomfortable hours on my commode chair as that liquid worked through my system. After that experience, I went three or four days before bowel movements began. Since then my BMs have been more regular With the aid of miralax which I am dialing back. The main issue I'm still dealing with is pressure or mild cramping between my hips. I'm fairly sure this is gas. Movement in hoyer lift and /or moving my legs relieves the pressure by aiding in passing gas. I think the gas issues may be a byproduct of my sedentary daily existence.

So that is where things stand at this point. Thanks again for all your replies and everyone be safe.
 

Jimi

Active member
Joined
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Messages
93
Reason
PALS
Diagnosis
02/2015
Country
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City
Torrance
Thought I would give an update and again thank all those who replied and gave their thoughts.

Two and a half weeks ago I had an abdominal CT which showed a moderate amount of stool in my Ascending colon. With the thought that it was a cause of my issues, my GI doctor prescribed for me the liquid given prior to colonoscopy hoping that a good clean out would relieve my issues. So, two weekends ago I spent several uncomfortable hours on my commode chair as that liquid worked through my system. After that experience, I went three or four days before bowel movements began. Since then my BMs have been more regular With the aid of miralax which I am dialing back. The main issue I'm still dealing with is pressure or mild cramping between my hips. I'm fairly sure this is gas. Movement in hoyer lift and /or moving my legs relieves the pressure by aiding in passing gas. I think the gas issues may be a byproduct of my sedentary daily existence.

So that is where things stand at this point. Thanks again for all your replies and everyone be safe.
I appreciate the update. This is a very important thing that I am always paying attention to. Can really effect the quality of life. Hope you continue to improve.
 
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