Adhesions affecting digestion and causing pain

Posted by Suzanne @suzanneb, Mon, Jan 6 8:29pm

Has anyone had a laparoscopic procedure at Mayo (Rochester) to explore and see what the extent of their adhesions are? Anyone have success having them removed? If so, who did you see?
It makes me very nervous to think about surgery since that is likely what caused them, but my quality of life 4 years in has gotten to be poor as pain keeps me from basic activities. I'd love to talk to a doctor about it to see what they think.

Hello @suzanneb,

I am sorry to hear about your pain and previous surgeries. I can understand your concern about another surgery which might result in more adhesions. I would like to invite @thull to talk with you about her problem with adhesions and pain. She had a procedure at Mayo which was of great help to her.

Have the adhesions affected what you can eat? Have you lost much weight?

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@hopeful33250

Hello @suzanneb,

I am sorry to hear about your pain and previous surgeries. I can understand your concern about another surgery which might result in more adhesions. I would like to invite @thull to talk with you about her problem with adhesions and pain. She had a procedure at Mayo which was of great help to her.

Have the adhesions affected what you can eat? Have you lost much weight?

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Thank you! Yes- in a major way. I believe that the adhesions have caused my intestines to stick together as well as involving some nerves. Due to being unable to walk or stand much for such a long time, my psoas muscle has now tightened so it's more painful to stand and walk. Anytime I try to gently stretch the psoas with my yoga therapist I am in terrible pain that makes my other issues worse.

I am on a gastroparesis diet that my gastro dr. at Mayo had me try.(the low fodmap diet- and lots of other diets- that a local doctor suggested was too restrictive especially since I generally don't have a big appetite) He also suggested I take FD Gard and IB Gard (peppermint tea was too harsh for me) which has helped some. My local therapist taught me how to do a belly massage which I do a few times each day. I really has helped with breaking up the gas bubbles and moving things along. Otherwise things back up to a dangerous level. I had originally had weight loss and was too thin, but not a dangerous weight; the pain doctors at Mayo have had me on cymbalta for a year now and I am having steady weight gain. It was fine at first, but now it is continuing to the point where I'm considering searching for an alternative medication.

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@suzanneb

Thank you! Yes- in a major way. I believe that the adhesions have caused my intestines to stick together as well as involving some nerves. Due to being unable to walk or stand much for such a long time, my psoas muscle has now tightened so it's more painful to stand and walk. Anytime I try to gently stretch the psoas with my yoga therapist I am in terrible pain that makes my other issues worse.

I am on a gastroparesis diet that my gastro dr. at Mayo had me try.(the low fodmap diet- and lots of other diets- that a local doctor suggested was too restrictive especially since I generally don't have a big appetite) He also suggested I take FD Gard and IB Gard (peppermint tea was too harsh for me) which has helped some. My local therapist taught me how to do a belly massage which I do a few times each day. I really has helped with breaking up the gas bubbles and moving things along. Otherwise things back up to a dangerous level. I had originally had weight loss and was too thin, but not a dangerous weight; the pain doctors at Mayo have had me on cymbalta for a year now and I am having steady weight gain. It was fine at first, but now it is continuing to the point where I'm considering searching for an alternative medication.

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When I got the obstructions from adhesions after my first 2 surgeries, I was on clear liquids. When I got home, had pic line on TPN for nutrition. I did massage on my belly once it was healed enough to be comfortable and I really believe it helped immensely. They did my big surgery a year ago today, actually! They wanted to try laparoscopic to minimize additional adhesions. However, when they got the scope in, they realized the adhesions were so dense they were going to have to open me up again. 4th Surgeries in less than a year. They spent the first 2 hours laising the adhesions and accidentally perforated my small intestine which they then repaired. The rest of the surgery went well, ended up with Deloyers procedure.
So the massage and Boost Breeze( a clear liquid drink box) is what really helped me. I also did clear broths. I cannot really tolerate the opioids as they make me really nauseous. I took liquid Advil .

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@thull

When I got the obstructions from adhesions after my first 2 surgeries, I was on clear liquids. When I got home, had pic line on TPN for nutrition. I did massage on my belly once it was healed enough to be comfortable and I really believe it helped immensely. They did my big surgery a year ago today, actually! They wanted to try laparoscopic to minimize additional adhesions. However, when they got the scope in, they realized the adhesions were so dense they were going to have to open me up again. 4th Surgeries in less than a year. They spent the first 2 hours laising the adhesions and accidentally perforated my small intestine which they then repaired. The rest of the surgery went well, ended up with Deloyers procedure.
So the massage and Boost Breeze( a clear liquid drink box) is what really helped me. I also did clear broths. I cannot really tolerate the opioids as they make me really nauseous. I took liquid Advil .

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Thanks for the info. I'm glad you are doing so much better! I do the belly massages at least twice daily and that really helps. I will definitely try the Boost Breeze and clear broths to see what that can do for me. What kind of surgeon removed your adhesions? I'm trying to figure out who to seek out since so far none of my current Mayo doctors seem to be experts on adhesions and none have had suggestions on who to see other than pelvic therapists and pain doctors; both of which couldn't help with that issue. Thanks!

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@suzanneb

Thanks for the info. I'm glad you are doing so much better! I do the belly massages at least twice daily and that really helps. I will definitely try the Boost Breeze and clear broths to see what that can do for me. What kind of surgeon removed your adhesions? I'm trying to figure out who to seek out since so far none of my current Mayo doctors seem to be experts on adhesions and none have had suggestions on who to see other than pelvic therapists and pain doctors; both of which couldn't help with that issue. Thanks!

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I have only been able to find the Boost Breeze on Amazon. I had a colorectal surgeon at Mayo. The went in because I had a really bad blockage again and ended up with the Deloyers procedure that removed the majority of my large intestine.

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@thull

I have only been able to find the Boost Breeze on Amazon. I had a colorectal surgeon at Mayo. The went in because I had a really bad blockage again and ended up with the Deloyers procedure that removed the majority of my large intestine.

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Hello Thull. I was wondering about your Deloyers procedure? Do you have an ostomy now? Is that what it would be called? And how is your bowel working now? I am on my 5th obstruction since October, and I am particularly concerned about this one. So far I have been able to get through them with my enemas, miralax, linzess, pureed food, and backing up to clear liquids. This one is more painfull though, and I am in the middle of it as I write this note. I have had lots of abdominal surgeries and am trying to avoid more.

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@upartist

Hello Thull. I was wondering about your Deloyers procedure? Do you have an ostomy now? Is that what it would be called? And how is your bowel working now? I am on my 5th obstruction since October, and I am particularly concerned about this one. So far I have been able to get through them with my enemas, miralax, linzess, pureed food, and backing up to clear liquids. This one is more painfull though, and I am in the middle of it as I write this note. I have had lots of abdominal surgeries and am trying to avoid more.

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Hi Teresa. Another question I have, is what tests are done to figure out where the adhesions are located? Any information would help. Thank you!

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@upartist

Hello Thull. I was wondering about your Deloyers procedure? Do you have an ostomy now? Is that what it would be called? And how is your bowel working now? I am on my 5th obstruction since October, and I am particularly concerned about this one. So far I have been able to get through them with my enemas, miralax, linzess, pureed food, and backing up to clear liquids. This one is more painfull though, and I am in the middle of it as I write this note. I have had lots of abdominal surgeries and am trying to avoid more.

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With the Deloyers procedure, they removed the rest of the sigmoid that was still there, all the descending colon, part of the transverse and then turned the rest of the transverse that was left, counter clockwise and ran it down along side my ascending colon and reattached to my rectum. So I have no large intestine on my left side. I have no bag, and although it took awhile for things to heal and settle down, my bowel functions pretty normally now. The dr said it is not a procedure they plan on, so I am thankful that I had the colorectal surgeon at Mayo, otherwise I could have ended up with a permanent ostomy. I had a temporary one for 6 months while they waited for my colon to heal in 2018

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@thull

With the Deloyers procedure, they removed the rest of the sigmoid that was still there, all the descending colon, part of the transverse and then turned the rest of the transverse that was left, counter clockwise and ran it down along side my ascending colon and reattached to my rectum. So I have no large intestine on my left side. I have no bag, and although it took awhile for things to heal and settle down, my bowel functions pretty normally now. The dr said it is not a procedure they plan on, so I am thankful that I had the colorectal surgeon at Mayo, otherwise I could have ended up with a permanent ostomy. I had a temporary one for 6 months while they waited for my colon to heal in 2018

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Wow! Thank you for that information. It is optimistic, and I need that right now.

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@upartist

Hi Teresa. Another question I have, is what tests are done to figure out where the adhesions are located? Any information would help. Thank you!

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Hello @upartist
I'm sorry that I don't have an answer for that. I'm not sure how adhesions are located. Best check with a doctor to see if there is a way that can be done.

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Thank you Teresa. I am actually scheduled for Gastro (again) in Feb. I am tired. This has been ongoing, leading into this last year. I had to leave work. I was not ready for that. My adhesions are likely profuse, so there will be no straight forward fix. My docs are very good. I am confident in that. They know I have been running hard away from another surgery. I am always looking for working pearls and the latest info. Thanks Teresa. This blog helps.

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@hopeful33250

Hello @upartist
I'm sorry that I don't have an answer for that. I'm not sure how adhesions are located. Best check with a doctor to see if there is a way that can be done.

Jump to this post

When they were trying to figure out where my blockage was, they did x rays and a CT scan with contrast. This showed where stuff was it the intestine vs areas that had nothing but air. This would indicate where everything was stopped, thus giving them an idea of other adhesions. But really, I don’t think they can exactly tell until they get in there. I know when they started laparoscopic last time, as soon as the camera was in, they saw how bad the adhesions were, and used the camera as a guide to see where to open me back up. My incision ended up being bigger, about 3 inches or so because they needed to start where there weren’t any adhesions. I hope this info helps

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@thull

When they were trying to figure out where my blockage was, they did x rays and a CT scan with contrast. This showed where stuff was it the intestine vs areas that had nothing but air. This would indicate where everything was stopped, thus giving them an idea of other adhesions. But really, I don’t think they can exactly tell until they get in there. I know when they started laparoscopic last time, as soon as the camera was in, they saw how bad the adhesions were, and used the camera as a guide to see where to open me back up. My incision ended up being bigger, about 3 inches or so because they needed to start where there weren’t any adhesions. I hope this info helps

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Thanks, @thull. You provided some very helpful information from your own experiences.

Liked by thull

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@upartist

Thank you Teresa. I am actually scheduled for Gastro (again) in Feb. I am tired. This has been ongoing, leading into this last year. I had to leave work. I was not ready for that. My adhesions are likely profuse, so there will be no straight forward fix. My docs are very good. I am confident in that. They know I have been running hard away from another surgery. I am always looking for working pearls and the latest info. Thanks Teresa. This blog helps.

Jump to this post

I'm so glad that you are finding Connect helpful to you, @upartist. I look forward to hearing how you are doing so I hope you keep updating as things change.

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@upartist

Hi Teresa. Another question I have, is what tests are done to figure out where the adhesions are located? Any information would help. Thank you!

Jump to this post

I had adhesions removed at the Mayo Clinic in Phoenix & surgery only makes it worse. I have adhesion's that are plastered to my intestines & bladder. There is nothing they can do about it. The dr. I had was very good & he removed what he could but through the process there was a small tearin the small bowel so you have to be careful about removing them. My dr. said no more surgery. It would only cause me more problems & just to treat the pain. Only way adhesion's show is through a laporoscopy. They do not show on a MRI or CY Scan. Best of luck to you.

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