Dyspepsia after multiple digestive surgeries?

Posted by bborth @bborth, May 12, 2021

In sum, GB removed 2013. Multiple ERCP procedures w/stents at the U of MN, roux en y surgery for bile reflux Fall of '19. This past 3 months I have had some reoccuring symptoms that are really affecting my quality of life again. Endo was normal, CT scan shows lots of stool in my system. I get a lot of pain radiating into my back now, and even up into the chest on my R side. Nausea, cramping, and feeling swollen on the R side which is really hard to just power through now. Anyone else have Dyspepsia by chance? Being told that with all the work on my GI tract that the muscles are not coordinating what needs to be done to digest property. May explain the stool backed up inside. Trying Linzess right now, mostly liquid diet. Also, can someone explain to me why bending over, like trying to do yard work, really sets off feeling like crap? No doctor has been able to give me a good reason or why this happens. I feel so packed in on the R side as if there is no space per se. I like to run a lot, and even that now is hard and making me nauseous. Wasn't like this at all 3 months ago, am wondering what triggered this in order to avoid whatever it was. Help!

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Hi @bborth, It sounds as though this problem is definitely affecting your quality of life. It makes everyday routine duties seem extremely difficult.
I would like to invite @lvon, @jillannw, and @darweshalassi to the conversation as they have had similar diagnoses and possibly add some words of wisdom.
Has your physician suggested anything for the Dyspepsia yet?

REPLY
@amandaa

Hi @bborth, It sounds as though this problem is definitely affecting your quality of life. It makes everyday routine duties seem extremely difficult.
I would like to invite @lvon, @jillannw, and @darweshalassi to the conversation as they have had similar diagnoses and possibly add some words of wisdom.
Has your physician suggested anything for the Dyspepsia yet?

Jump to this post

Only Trulance which is for constipation. Helps a bit, but I need to understand WHY this happens. Get another X ray tomorrow to compare to the scan 2 weeks ago which showed the “copious” amounts of stool inside. The back pain this causes is unreal.

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@bborth - I understand your misery- have been through similar myself.
It’s unfortunate that many of us continue with GB problems after it’s removed.
I had 2 ERCPs - to widen the bile duct opening. I also had pancreatitis, chronic. The two ducts open together in the intestine.
As long as I stay away from certain fats I’m ok.
Constipation is also a chronic condition if you have motility problems.
The large intestine expands a lot and can hold a lot of stool. Therefore, you have to find a good way to empty out as much as possible. The colon will eventually return to normal size. The GI doctor’s office should be able to help you plan a successful program to empty out.
Constipation is one of the most common complaints GI hear.
The pain you have bending over is something I also have had. It was diagnosed as MALS- Median Arcuate Ligament Syndrome. A ligament compresses the celiac artery, preventing it to supply blood to intestines = severe pain, especially after eating.
However, this is a very rare condition.
It can be found when they do an ultrasound Doppler of abdominal arteries.
You can ask your doctor to test for MALS. Many doctors are not familiar with it.

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@astaingegerdm

@bborth - I understand your misery- have been through similar myself.
It’s unfortunate that many of us continue with GB problems after it’s removed.
I had 2 ERCPs - to widen the bile duct opening. I also had pancreatitis, chronic. The two ducts open together in the intestine.
As long as I stay away from certain fats I’m ok.
Constipation is also a chronic condition if you have motility problems.
The large intestine expands a lot and can hold a lot of stool. Therefore, you have to find a good way to empty out as much as possible. The colon will eventually return to normal size. The GI doctor’s office should be able to help you plan a successful program to empty out.
Constipation is one of the most common complaints GI hear.
The pain you have bending over is something I also have had. It was diagnosed as MALS- Median Arcuate Ligament Syndrome. A ligament compresses the celiac artery, preventing it to supply blood to intestines = severe pain, especially after eating.
However, this is a very rare condition.
It can be found when they do an ultrasound Doppler of abdominal arteries.
You can ask your doctor to test for MALS. Many doctors are not familiar with it.

Jump to this post

Really interesting to hear this. I never thought this could cause so much distress....at its worst it literally makes me non functional. I am taking Trulance which is like Linzess to get things moving along. This seems to help some, just really hits fast so need to be close to a toilet. My question is what causes this to all happen when I had gone months w/o problems. I obviously eat healthy, but when this kicks in it literally is getting all my calories via smoothies. Then the pain the back and up the shoulder. Bending over, or twisting......kicks things over the edge. At least for now some relief with this medication, but anything else you can recomend would be huge. Diet ideas? MALS.....the only way to dx is through the ultrasound then? Thank you!!!!

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Are you staying on a liquid diet because of pain?
Fiber is good for constipation.

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@astaingegerdm

Are you staying on a liquid diet because of pain?
Fiber is good for constipation.

Jump to this post

Really confusing as my second x ray really didn't show any improvement. Yes, higher fiber diet but I just can't eat much due to the reaction. Pain into the lower back, same side, and up into the R shoulder. Can you lend any advice as to why the motility all of a sudden changes? Doc wants me to do the deal pre colonoscopy to purge things out. But unless the motility issue is solved, won't this just happen again?

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I think it’s a good idea to do a total clean out and then colonoscopy. Once cleaned out they could tell you what to do to prevent the buildup. Like I said earlier, the large intestine can expand a lot to hold stool. The goal is to let it shrink again to normal size.
Motility problem seems to be quite common. The intestine has its own nervous system and it does not function correctly.
Like me, you may have more than one gastrointestinal problem. It was tough for me to realize I had so many different things going on- I learned to keep them separate, otherwise it’s overwhelming. It’s easier to deal with one issue at a time.

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@bborth

This is long .. but it is a condensed version of my story… and if you read my story before just skim over it.

I had a paraesophageal hernia that kept coming up into my chest. It caused pressure and pain in my chest along with it came acid reflux. I had the acid reflux since 1991 from this hernia. I also had gastroparesis. I have diverticulosis along with Barrett's esophagus, achalasia (difficulty swallowing) and esophageal spasms now.

I had a Nissen fundoplication + gallbladder removed in 2001, in 2007 a repair of the Nissen… surgeon placed some mesh in a place he should not have and it caused me a lot of stomach pain. We had words and he was dismissed. I suffered a few more years and in fall of 2012 I lost a lot of weight because of nausea and pain. I was referred to the Mayo Clinic because they “fix other surgeons' mistakes”. The surgeon at the Mayo Clinic in Jacksonville undid the Nissen in 2013 and removed the top portion of my fundus that contained the mesh and did a repair of the hernia. I could not have another Nissen.. no fundus for the wrap. I had a lot less pain after the surgery, but it was not long before I had chest pressure again. My stomach was in my chest again along with the hernia. I returned to the Mayo Clinic in 2014, but different surgeon.. the first had left. I was assigned Dr Bowers. He said it would be crazy to try a traditional repair again. He did a gastric bypass … he said with a twist.. still not sure what the twist was. I had a complication… 1% chance of my esophagus shortening.. but it did. It brought one loop of my intestines into my chest. It caused a leakage they could not find, but it eventually fixed itself. I was too weak for more surgery needed to repair the damage. I left with a feeding tube. About six months later I had two more loops of my intestines come into my chest… partially collapsing my left lung. Back to the Mayo Clinic for more surgery in May 2015. This time open.. they were working close to my heart so a thoracic surgeon was brought in to assist. They had to carefully remove my lung .. which had adhered to my ribcage.. from my ribcage, repair my diaphragm, lengthen my esophagus, and put everything back in place and repair the hernia again. I had the feeding tube in place for another 5-6 months,

___________________________________________________________________________________

With the diverticulosis I am suppose to have a high fiber diet. As you know with the gastric bypass the pouch “stomach” does not hold much. I can eat at most usually a cup of food.. sometime one and a half cups… . just depends on what I eat. When I was on liquid diet I did okay. The surgeon had me to drink High Protein Carnation Instant Breakfast.. the bottles already mixed .. which have fiber in them. He told me to add banana and / or peanut butter to it for added fiber. I could usually only drink half a bottle over about an hour with about a 1/8 cup of banana (usually frozen) and a tablespoon of peanut butter mixed in the whole bottle.

After all these surgeries the rules my doctors have given me are eat no raw vegetables, no fibrous vegetable… like cabbage, broccoli, spinach, lettuce, turnip, mustard or collard greens. No raw fruits and no cooked fruits with skin. I can eat ripe bananas, cooked and canned fruits. Since I have the swallowing problem I have to eat soft cooked vegetables and tender, non stringy meats. I do venture out and eat roasted nuts… pecans, walnuts and almonds. (peanuts bloat me) I can tolerate small amount of dried fruits that are well chewed .. sometimes finely chopped in muffins. Some breads I am not able to swallow.. especially whole wheat.

I had diverticulitis back in 2018… so bad I thought I might have to be hospitalized. So I am more mindful of making sure I get my fiber… snacking on roasted nuts and dried fruits has helped the most. .. a teaspoon, tablespoon here and there adds up. They are a good energy source too. I found I can also eat a tablespoon or two of Bush's baked beans as part of a meal. I just lower the amount of meat I eat so I have room enough for the beans. I avoid foods with a lot of onion and garlic in them… I tend to burp excessively and bloat with them.

I still have chest pains and have been told I will always have them. It hurts more after eating… I might have overeaten by a tablespoon. It hurts more when I am physically active… laundry, walking.. anything with movement. The more intense the activity the more intense the pain… the thoracic surgeon said not to worry you are not having a heart attack… uum .. how am I to tell when chest pain is a heart problem? The pain is mostly across my back… and my ribs.

Resting and heating pad helps with pain. I have a microwaveable heating pad much like they use in physical therapy. Sometimes I have to hold it on my stomach and massage my stomach.. sometime I have it on my back. Depends where I hurt. The heating pad can help with the pain of constipation.. seems to help get things moving along with the massage. Sometimes I eat a chocolate candy to help. I eat very little sugar and the chocolate or any sugar works much like the Karo syrup I used to add to my babies' formulas.

My best advice is to keep a daily journal. What you ate, what exercise you did.. when did you have pain.. where the pain is.. what relieves the pain… how you are feeling.. etc. When you visit your doctor have questions written down and have something to write the answers down with… then transfer your questions and answers to your journal. With my family doctor I have to make a copy of my questions for him.. he had started taking them out of my hand and writing his answers on the paper… reading a doctor's handwriting is worse than reading mine. 😂

Oh… one more thing… if you take medications make sure they are not part of the problem. They can have side effects your doctor is not aware of.. if necessary go over your medications with a pharmacist. They know the side effects and how they interact with other medications.

Best wishes,
ZeeGee

REPLY
@astaingegerdm

I think it’s a good idea to do a total clean out and then colonoscopy. Once cleaned out they could tell you what to do to prevent the buildup. Like I said earlier, the large intestine can expand a lot to hold stool. The goal is to let it shrink again to normal size.
Motility problem seems to be quite common. The intestine has its own nervous system and it does not function correctly.
Like me, you may have more than one gastrointestinal problem. It was tough for me to realize I had so many different things going on- I learned to keep them separate, otherwise it’s overwhelming. It’s easier to deal with one issue at a time.

Jump to this post

Thank you so much for the insight here, I learn more from people like you who have been through similar situations! Starting the C prep today with the procedure tomorrow. For the life of me I can't understand why my condition would all of a sudden change over (this past January) from doing pretty well to this. The pain that radiates into my back and up into the R shoulder is really hard to deal with, especially at night. So more of a motility issue in your opinion? With numerouse GI procedures/surgerys I have to think that did something to the way my body moves things through. Being an active guy this really sucks, I can't run now because it hurts too much from the up/down motion. Never have had to do this before in all my GI deals in the past.

REPLY
@fourof5zs

@bborth

This is long .. but it is a condensed version of my story… and if you read my story before just skim over it.

I had a paraesophageal hernia that kept coming up into my chest. It caused pressure and pain in my chest along with it came acid reflux. I had the acid reflux since 1991 from this hernia. I also had gastroparesis. I have diverticulosis along with Barrett's esophagus, achalasia (difficulty swallowing) and esophageal spasms now.

I had a Nissen fundoplication + gallbladder removed in 2001, in 2007 a repair of the Nissen… surgeon placed some mesh in a place he should not have and it caused me a lot of stomach pain. We had words and he was dismissed. I suffered a few more years and in fall of 2012 I lost a lot of weight because of nausea and pain. I was referred to the Mayo Clinic because they “fix other surgeons' mistakes”. The surgeon at the Mayo Clinic in Jacksonville undid the Nissen in 2013 and removed the top portion of my fundus that contained the mesh and did a repair of the hernia. I could not have another Nissen.. no fundus for the wrap. I had a lot less pain after the surgery, but it was not long before I had chest pressure again. My stomach was in my chest again along with the hernia. I returned to the Mayo Clinic in 2014, but different surgeon.. the first had left. I was assigned Dr Bowers. He said it would be crazy to try a traditional repair again. He did a gastric bypass … he said with a twist.. still not sure what the twist was. I had a complication… 1% chance of my esophagus shortening.. but it did. It brought one loop of my intestines into my chest. It caused a leakage they could not find, but it eventually fixed itself. I was too weak for more surgery needed to repair the damage. I left with a feeding tube. About six months later I had two more loops of my intestines come into my chest… partially collapsing my left lung. Back to the Mayo Clinic for more surgery in May 2015. This time open.. they were working close to my heart so a thoracic surgeon was brought in to assist. They had to carefully remove my lung .. which had adhered to my ribcage.. from my ribcage, repair my diaphragm, lengthen my esophagus, and put everything back in place and repair the hernia again. I had the feeding tube in place for another 5-6 months,

___________________________________________________________________________________

With the diverticulosis I am suppose to have a high fiber diet. As you know with the gastric bypass the pouch “stomach” does not hold much. I can eat at most usually a cup of food.. sometime one and a half cups… . just depends on what I eat. When I was on liquid diet I did okay. The surgeon had me to drink High Protein Carnation Instant Breakfast.. the bottles already mixed .. which have fiber in them. He told me to add banana and / or peanut butter to it for added fiber. I could usually only drink half a bottle over about an hour with about a 1/8 cup of banana (usually frozen) and a tablespoon of peanut butter mixed in the whole bottle.

After all these surgeries the rules my doctors have given me are eat no raw vegetables, no fibrous vegetable… like cabbage, broccoli, spinach, lettuce, turnip, mustard or collard greens. No raw fruits and no cooked fruits with skin. I can eat ripe bananas, cooked and canned fruits. Since I have the swallowing problem I have to eat soft cooked vegetables and tender, non stringy meats. I do venture out and eat roasted nuts… pecans, walnuts and almonds. (peanuts bloat me) I can tolerate small amount of dried fruits that are well chewed .. sometimes finely chopped in muffins. Some breads I am not able to swallow.. especially whole wheat.

I had diverticulitis back in 2018… so bad I thought I might have to be hospitalized. So I am more mindful of making sure I get my fiber… snacking on roasted nuts and dried fruits has helped the most. .. a teaspoon, tablespoon here and there adds up. They are a good energy source too. I found I can also eat a tablespoon or two of Bush's baked beans as part of a meal. I just lower the amount of meat I eat so I have room enough for the beans. I avoid foods with a lot of onion and garlic in them… I tend to burp excessively and bloat with them.

I still have chest pains and have been told I will always have them. It hurts more after eating… I might have overeaten by a tablespoon. It hurts more when I am physically active… laundry, walking.. anything with movement. The more intense the activity the more intense the pain… the thoracic surgeon said not to worry you are not having a heart attack… uum .. how am I to tell when chest pain is a heart problem? The pain is mostly across my back… and my ribs.

Resting and heating pad helps with pain. I have a microwaveable heating pad much like they use in physical therapy. Sometimes I have to hold it on my stomach and massage my stomach.. sometime I have it on my back. Depends where I hurt. The heating pad can help with the pain of constipation.. seems to help get things moving along with the massage. Sometimes I eat a chocolate candy to help. I eat very little sugar and the chocolate or any sugar works much like the Karo syrup I used to add to my babies' formulas.

My best advice is to keep a daily journal. What you ate, what exercise you did.. when did you have pain.. where the pain is.. what relieves the pain… how you are feeling.. etc. When you visit your doctor have questions written down and have something to write the answers down with… then transfer your questions and answers to your journal. With my family doctor I have to make a copy of my questions for him.. he had started taking them out of my hand and writing his answers on the paper… reading a doctor's handwriting is worse than reading mine. 😂

Oh… one more thing… if you take medications make sure they are not part of the problem. They can have side effects your doctor is not aware of.. if necessary go over your medications with a pharmacist. They know the side effects and how they interact with other medications.

Best wishes,
ZeeGee

Jump to this post

Awesome advice here. So much to consider, but keeping a journal of sorts would help to pinpoint where a trend lies in regard to cause and effect. I am really sorry for all you have gone through.....major stuff no doubt. How do you keep any optimism, and what has helped you deal with the mental issues in all this?

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