Dyspepsia after multiple digestive surgeries?

Posted by bborth @bborth, May 12 6:58am

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!

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?

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@amandaburnett

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?

REPLY
@bborth

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.

Jump to this post

After getting results of your procedure tomorrow, discuss possibilities of pain origin with your doctor. Pain related to organs in the abdomen, including kidneys, often shows up in a different place- referred pain. You doctor would know the possible causes. At times, pain in the abdominal wall can come from an impinged nerve.
I’m interested to hear what is found. Mystery.
Good luck tomorrow!

REPLY
@bborth

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?

Jump to this post

@bborth

Another long one… but so many thoughts on your question: How do you keep any optimism, and what has helped you deal with the mental issues in all this?“

Please do not feel sorry for me. This is life.. good and bad. I have many blessings among all I have been and am going through.
Through my experiences I have met people from many other countries. It has been educational meeting and interacting with them.

My physical problems have affected my mental outlook many times.. but there are also other things to affect me mentally. My dad passed away in 2000; my mother-in-law and a nephew (he committed suicide) in 2017; my sister, a close friend and my father-in-law in 2018; one of my brothers in 2019 (he had lived with our mom.. she came to live with my husband and me in June if 2018); my mom passed August of 2020 and then in October a cousin that I was close to. Other worries with family.. same as most families.. we function the best we can.

I will be 70 years old in a few weeks. My husband 71. He is what keeps me going.. bringing joy to my heart and always vigilant in my care. He loves me beyond measure. We will have been married 52 years in August. He has stayed by my side through some pretty difficult things.. he was by my bedside in prayer and tears when I was so sick with infection.. iffy I would make it through it alive.. I have met others whose spouse deserted them when life got hard.

We have a daughter… we rarely see…. just the physical distance keeps us apart. She is married with no children. We talk often. We have a son who is married .. his wife came with two children, one lives with them and one in Virginia… and he and his wife (an alcoholic) have two children together. We do not see them as often as we like. We talk.. a lot! The grands call often.. especially the six year old. They always brighten my day. .. even when they have a problem they need help with.. like coping with their mom. .. or what color should they color a dog on their coloring page.

I keep my mind busy as I can. I crochet and play games on my ipad. I love to walk. I have had trouble with walking the past year because of sacroiliac dysfunction. I pretty much have walked around the yard with the dog the past few months. I had SI joint fusion about 3 1/2 weeks ago. I am walking better and walked the street in front of our home… a map online said I walked about .8 miles. I will make that mile soon. 😀. I do other exercises as I am able to keep my muscles and bones healthy. I love genealogy.. what bigger puzzle could there be to keep my mind busy and functioning.

Happiness is not something that just happens… it is to be sought after and created. It is something that should be in your everyday thoughts and actions.

Little things… they are what bring happiness. Maybe as little as a smile received or given. 😀. I like to share a smile .. and maybe with a nod of the head to acknowledge them.. with a stranger as I pass them in a store or doctor's office or as they walk pass my home. A smile.. I have found to be one of the greatest gifts to give someone. .. and has been one of the greatest gifts I have received.

There is a small assisted living home around the corner from us. Every time my husband drives past and someone is sitting on the porch he toots the car horn and waves. The residents always wave and smile. I look at my husband.. he is waving and smiling. He smiles until something else distracts him. I smile because he is smiling.

I spoke of happiness… happiness is my hope… my optimism .. and spoke some on despair. Now I speak more of despair.. of depression. I have been to the deepest pit of darkness. .. where I saw not even a speck of light.. of hope. I honestly thought of suicide in 1997. Why I felt that way .. I still do not know for sure. It was a year of one thing after another.. illness and death in family and I had surgery myself.. a hysterectomy.

It was time for my yearly checkup with my family doctor. We spoke about.. I have no idea what.. then he says he has a questionnaire (basically about feelings.. reactions to situations) he wants me to answer. It was several pages and took about an 30 minutes to complete. The nurse takes it to the doctor to read and I wait about 15 minute for him to return. He asked me if I had any objections to taking Prozac… would I take it if he prescribed it. I told him I would take it. I did for a year or so.. and did well, but started feeling depressed again. With permission I asked to go off of it. I thought I would do better without it. I did go off of it .. slowly.. and have done well since. Attitude goes a long way. I promised myself I would not go to that dark pit again. With help from my husband I haven't. He tells me when I seem to be depressed.. it usually happens now after a new medication… I ask for an alternative one or just go on without it. They have been all medications for pain.

Our mental attitude is a big part of our health. Just writing in the journal helps. It is important to write down how you are feeling mentally as well is physically. Your physical being as you know can affect you mentally. In same respect how you handle things mentally affect you physically.

Being optimistic is good, but you also have to do the best you can with the physical things that are not going to change. I have accepted that I will always be in pain. It does not mean that I will not try to keep the pain under control… or try obliterating some of it if possible. I am fortunate to have a pain specialist that is trying to help me.. not with just pills, but recommending physical therapy when he believes it is best choice. He is also educating himself on the newer ways to treat pain. He tells me he has a plan to help with my ribs.. but it has to wait until I fully recover from the SI joint fusion. Maybe by this fall. He tells me often that I have a great attitude and that make a difference in how well I do with any treatment he does. I want to do things.. which is great… which is also bad. He says walk and I want to go at my old pace of 3-4 mph. .. not good. I have to slow down so I can heal.

I do not consider myself religious. I am spiritual. I believe in the trinity.. I believe in prayer.

Below is a prayer that Sister Angelica wrote.. I do not remember how I came across it.. maybe my reading through poetry or quotes.. which I love to do or maybe a friend's facebook post. I only glance at facebook to see what is going on with my family.. I have a lot of cousins.

I see words in Sister Angelica's prayer that I have thought myself many times.

“O God, my mind whirls around in confusion and my soul seems destitute of all consolation. It is as if all the world and all my life were telescoped into one moment and I carry the burden of it all. I cannot see any future except tomorrow being another today. All my yesterdays crowd around me, some accusing and some regret filled. It is like a prison with a thousand voices shouting for attention. Divine Jailor, You have the key to release my soul from the prison of discouragement. Unlock the doors and let me roam freely into the regions of Your love. Deliver me from the tyranny of my own will. Surely You take no pleasure in my soul disquieted within me, for then I am wrapped in myself: Do I hear You whisper, “Unlock the door for the key is within. I wait ready to enter and comfort you”?”
– Sister Angelica

I hope somewhere in my ramblings I have answered your question.
ZeeGee

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