adhesions causing GI problems

We discuss the symptoms of GI disorders but I would like to know if any of you have adhesions due to previous abdominal surgeries. Most of my GI issues occurred following multiple GYN surgeries. My life changed completely on 9/13/91. I had to have a third GYN surgery due to hemmorhagic cysts. I also delivered my 2 children by C-section. I have had 2 laproscopies and an illioingual surgery . My abdomen is not attractive to say the least.
The last time the surgeon opened me up he said it looked as if someone had taken elmers glue and stuck my bowel together. He lysised adhesions for hours. After that surgery I had a very profound ileus. After 3 weeks using a miller abott tube and gastrogafin among other medical intervention I was finally well enough to go home. I left the hospital with chronic pancreatitis, severe bowel dyfunction, gastroparesis, etc... but I would not know the diagnosis until Dr. Phillip Toskes at Shands Hospital in Gainesville, Fl was able to do some testing. He was able to get me on my feet for awhile. I did spend awhile on TPN at home but my central line became infected so that was discontinued. What kept me going back then was slimfast. It is high in nutrients, and I was able to keep most of it down. I did go back to Shands for a 24 hour small bowel motility test. The tech sprays your throat and then you swallow all these wires and leads. Its like an eeg of the bowel. It was a good diagnostic tool for me. At that time I tried octreatide injections, but they unfortunately inhibited the stomach emptying and caused more vomitting.
Well I am sorry about the length of this discussion. It hard to take 18 years and condense it. So many doctors, so many hospitals and tests! Many of you have been there. I would like to know if adhesions have been a problem for any of you. Thanks, I look forward to the discussion. Sara

By eve03
Posted September 22, 2009 at 10:43 pm
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Hi Sara,

I also visit Dr. Toskes. I had 4 GI surgeries and also ended up with GP, pancreatitis and the dreaded adhesions. The surgeon said is a 50% chance they'll come back even worse if they try to clean them, so I made the decision not to have any more surgeries related to it. It's hard for me to distinguish between pancreatitis pain, adhesions or the GP. For now I'm hanging in there.

Hope you have a great evening. E

By margamouse
Posted September 23, 2009 at 7:23 am
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I was in the hospital for two weeks in January in severe pain and had LOTS of tests to try and find out why (with no luck). Between the gp, the pain, and not eating enough, I had to have a j-tube put in (have since had it removed). The surgeon did a bit of exploring at that time and found adhesions
Now I'm in pain again and he feels that adhesions are probably causing it again.
He won't even think of doing another surgery to remove the adhesions until he feels my body has healed enough. said "You've been through hell this past year and you need to heal, feel better and regroup before we can consider going in again."
And, of course, the adhesions can reform from THAT surgery. It's a bit frustrating, this vicious circle we're on.
I hope you feel better!! This pain starts to wear you down after a while, huh?!

By prayer
Posted September 23, 2009 at 11:32 am
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Your story sounds just like mine. I also had lysics of adhesions and the developed a partial bowel obstruction in the hospital. Adhesions can flare up from time to time but unless they cause a full bowel obstruction they do not operate. The trouble with operating is that every time you are cut you get more. The most important thing is to keep well hydrated and keep things moving. I do okay today but there are time, especially if I get the stomach flu that they really hurt. You will be okay.

By whit18
Posted September 24, 2009 at 2:27 am
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I had a major abdominal surgery in 03, and I also have tons of adhesions. I asked my Dr. what they could do, and he said he could go in and clear them out, but that they would just come back, and possibly more would result. I have a hard time with them, and was wondering if anybody has advice or suggestions that make them more manageable? That would be great. I'm sorry you've had to deal with this for soo long, you are not alone, this site is great help with our conditions :) - Whit :)

By NancyL
Posted September 24, 2009 at 3:06 pm
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Perhaps sticking to a liquid diet and taking miralax to keep everything loose would help food pass the areas that are narrow from the adhesions. I thought that I had adhesions after my surgery because the food seem to stop just below my stomach. It turned out in my case that I just have almost no motility at all in my colon so there is no wave like action to propel food along. I have to stick to liquids and I manage to pass food in the most part just due to gravity. If I do it solids I get backed up and then nothing leaves my stomach for days. It is the wierdest feeling to feel like your stomach is completely full 3 days after the last meal you ate. I wish you lots of luck managing your conditions.
Nancy

By Lynee
Posted September 24, 2009 at 8:49 pm
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Yep, adhesions are something there just isn't any good way to deal with. I had a total hysterectomy about 16 years ago and my uterus was completely adhered to my abdomen wall - it tore away and hemoraged. The last lap I had they said the abdomen is "riddled" with adhesions. No good way to deal with them because every time they go in they cause more. I have a PEG tube that was put in about 16 months ago and now it is forming adhesions around it. Some people just form them. Someone told me that abdominal massage might be able to help "break" them up - my abdomen can't be touched without extreme pain though so that's not an option for me.

Wish I had better advice.

Lynee

By Pebbles5410
Posted September 25, 2009 at 10:46 pm
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I have multiple digestive problems, but the worst problem is caused by adhesions from pancreatic surgery and then a hysterectomy. I am in and out of the hospital and have had surgeries because the bowel obstructions were total. Now, I live with constant pain because I am always partially obstructed. I also have a redundant colon with colonic inertia, gastroparesis, and constant irritation of the stomach lining.

The only things that have helped the colonic inertia and the obstructions are gentle abdominal massages, and I take 750mg of magnesium daily with 3 stool softeners. I also learned the trick of taking high doses of Vitamin C (which won't hurt you) with fluids. The C will cause loose stools, but will give relief. I never have normal stools due to the partial obstructions so loose stools are the only thing I can have.

I may not have said anything that will help, but these things help some. They don't always relieve the pain but helps to keep me out of the hospital. It is rare for me not to be in extreme pain.

Carol

By marycb
Posted September 26, 2009 at 6:54 am
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For my gut pain caused by adhesions, there are a few thing I find somewhat helpful. A heat pad can do wonders, I guess it relaxes things (I do find my pain is worst when I'm stressed). Also, besides avoiding fiber in the diet, avoiding anything that causes gas (carbonated beverages, garlic, onion, peas, beans, brocolli, cauliflower, basically everything I love to eat) helps alot if I can force myself to do it. But basically, when the scar tissue (adhesions) decide to go into pain mode, you are just along for the ride! Just hope it's a short ride and the pain eases soon.
Mary

By DigmundFreud
Posted September 26, 2009 at 5:33 pm
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I am wondering how the adhesions are diagnosed. Are they every able to see them on CT scans or MRI? Or is the only way to find them is to go inside? My brother has Chrons, when he was first diagnosed he had adhesions and went on TPN (drank only clear liquids, no food) for about 4 mths. Hasnt had any major relapses since. DF

By shamrockmom
Posted September 27, 2009 at 11:13 am
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Sara,
I had adhesions due to previous abdominal surgeries. I had 3 small bowel obstructions; all adhesion related. The first one was attributed to a previous GYN surgery. My abdomen is also not attractive to say the least. My husband jokes saying I should tattoo a flower around my belly button and all the scars leading up to it should be the vine with thorns. The last time the surgeon opened me up she used “SEPRAFILM”. SEPRAFILM is a leading adhesion barrier, proven to be safe and effective in open abdominal pelvic surgery. SEPRAFILM can help prevent adhesions and the complications they cause. http://www.seprafilm.com
Hopefully for me, it will prevent future adhesions in that area. I now have severe bowel dysfunction, and gastroparesis. Right now I have not been able to tolerate solid food since my last surgery in Dec 2008. I have lost over 35 lbs putting my weight at 90 lbs. I have tried so many meds along with a 1 week out patient radioactive scan to find the “missing link”. Scans showed colon not working but I can’t do further colon testing until I gain weight because my body will not be able to handle the colon prep. Doc wants to put me on TPN at home. I have heard so many stories that the central line becomes infected and has to be discontinued. The whole thought of TPN or any tube feeding scares me. I fear the possibility of the infection aspect of the tube. You said what kept you going back then was Slimfast. My doc has me drinking Boost and Ensure but they are nasty. Maybe I should look into Slimfast because I am having difficulty getting down the recommended 3-4 cans he recommended. How did you keep most of it down? Never be sorry about the length of your discussion. So many of us experience different things that maybe what one has experienced may be the answer you are looking for. I check the site frequently for answers hoping someone will have an answer but lately I have been so exhausted since going back to work that the thought of responding or asking so many questions was to draining. Good luck feel better and let me know how you are doing. We are ALL in this together!! Here is something I posted previously:
"When life's problems seem overwhelming, it helps to look around and see what other people are coping with. You may consider yourself far more fortunate than you imagined".
”YOUR CROSS”
Whatever your cross, whatever your pain, there will always be sunshine after the rain. Perhaps you may stumble, perhaps even fall, but God's always there to help you through it all.
Eileen

By Skinny
Posted September 30, 2009 at 6:21 am
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Yes me too! 2 bowel surgeries age 19 to "untangle the volvulus" I suspect now that these were pseudoobstructions that might have settled with conservative treatment but hey they didn't have a clue about me then and if a young woman presents with an acute abdomen they are only too happy to sharpen their sparkling knives with a gleam in their eyes!!

Followed over the years by 2 C sections. By the time I had the second one they did actually know what my problem was and the consultant actually did my section himself and did a little bit of judicious adhesion snipping at the same time (my bowel was stuck to my uterus)

Then my 5th surgery was the nastiest about 2 and a half years ago, probably as a result of adhesions and the underlying gut motility problem. This time I needed a resection. I was very ill and I really don't want to even think about it now.

However the good news is that I can highly recommend abdominal massage. Find a specialist who can do this for you - you can DIY to a certain extent but you cant get the relaxation required unless someone else is doing it. OK at the start she couldn't get very deep at all but now she gets right in there and she seeks out the stuck bits and stretches them. I see her every fortnight and my bowels are working much better than they were doing. This makes a lot of sense to me at a logical level and feels very relaxing at a psychological level. It is really very helpful to be able to associate some comfort in a part of my body that has been the source of so much pain during most of my life. I think I had learned to shut it off and try and ignore it, but that wasn't helping it to do whatever digesting it is capable of!! Heat does this to a certain extent but doesn't alter anything structurally.

I have no idea how you find someone like this, I was very lucky, I was already seeing her for Shiatsu massage and she went on a course with me in mind!!

So as a rule don't let anyone near you with a shiny knife! - unless you are on deaths door! Stretch 'em instead! I also think that surgery is gradually becoming les and less invasive and that it might be possible to zap the adhesions by laser via keyhole surgery?? Who knows a GI surgeon well enough to have that conversation? I think I still prefer the massage route!

Kind regards Skinny

By sharronm55us
Posted September 30, 2009 at 11:05 am
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Hi,

I have not been around in a while, been trying to stay alive. Adheasions are the major cause of pain within my body. I have had two csections, my gall bladder removed, a gastric bypass, appendix removed, a gastric bypass reversal, and my total stomach and spleen removed. These surgeries have caused a great deal of pain in the area where my stomach use to be. There are also there balls in there that are directly related to the surgeries. They will not do anything about them, it would cause more harm than good to go in and operate on me yet again. There are other reasons for the pain also, but these little balls and the adhesions are the main source of my upper adominal pain!

When I dry heave the pain becomes almost unbearable. I need some help with this and am going to the Gastro doctor today. My internal medicine doctor has no idea why I am dry heaving. It is after I have my TPN hooked up for several hours. I put an injection of Zofran in the IV bag every night. I do not understand because Zofran has always worked great for me. Anyways, I wanted to say hi to everyone that remembers me. I am disabled out of teaching because it is difficult to teach with an IV in your arm! I am still kicking but things did get horrible for a while but with the TPN I am now gaining weight and my blood pressure among other things is coming up. I am very hopeful my iron is coming up also. The gastro doctor mentioned something about an injection into my bone marrow that would help my body absorb iron, or some such thing. I would rather not go there!

Okay, enough from me, hi again to everyone that remembers me and to those that do not, HI NICE MEETING YA! Hang in there, it can get ugly at times but there is always the upswing!

By suzieb
Posted October 2, 2009 at 9:25 pm
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I so appreciate all the responses to my discussion. As far as I know the only way to diagnose adhesions is to see them. Lynee had mentioned a laproscopy was used to diagnose her adhesions. It may cause more, I don't know. It certainly would not cause more than surgery.
I hope the docs are able to help him.
Take Care, Sara

By suzieb
Posted October 4, 2009 at 12:04 am
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Dear Skinny, thanks for replying to my discussion post. You have been through so much. I guess we all have. I am interested in the adhesion massage. I use a heating pad all the time. I wear them out. Thankful for warantees. Anyway, when my GI palpates my abdomen, it is very painful. It hurts all the time without someone touching it. How did you stand the pain during the massage?
I started to say that when my GI palpates my abdomen he tells me it feels like dough. I guess normally the organs would be floating freely, and with adhesions that doesn't happen. He can tell it is all stuck together, there is no movement.
I have decided that the research needs to be directed at dissolving? adhesions. They seem to be the cause of the motility torture.
I am glad you are still working. I had to "retire" after the last surgery in 1991. I was in social services for the elderly. I loved counseling especially. I used to write grant applications. I guess that hardest part of
this illness is what it takes away. This online community has already helped. I have been sick for almost 18 years and my husband still doesn't understand it. He tries and is very supportive which I appreciate and love him all the more for. If I were him I would have "run for the hills". We live in Florida so he has no hill to run for. It's late, had to add a little humor. Thank you again for the support and info. Take Care, Sara

By busyteacher
Posted October 4, 2009 at 10:08 am
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I had adhesions on my bladder after treatment for endometriosis. When I developed ectometriosis, I had to have a hysterectomy. My bladder was perforated when they removed the adhesions, but is much better than it was before the surgery.
I don't know what else is in there--and I'm not asking. The GI problems are just going to have to stay where they are.
I do tend to develop excessive keloid tissue, as does my son. His intestine is actually adhered to his abdominal wall following a bowel perforation with an enema/iliostomy and colostomy/reversal of colostomy. We're lucky to have him alive.

By suzieb
Posted October 8, 2009 at 12:26 pm
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teacher, how old is your son? Is this all hereditary? It sure is a coincidence. Adhesions make everything stick together. I still think the docs are approaching our issues in the wrong way. If they could devise a way to reverse adhesions then we would all be better off.
You have your hands full. I am proud of how you are able to work and care for your family. I was able to do so much more even a year ago than I can now. That is what makes it so hard on my husband. We are trying to make plans for our retirement (his) and my health is always the elephant in the room. I have so much guilt. I know it is not rational because I did not choose to be ill. It is just my personality. I just feel as if I have ruined our lives. I have had health problems most of my life. I hope someday a doctor will be able to put a name to the constellation of symptoms I have now and others I have had. It would help to understand it all. Meanwhile, we carry on the best we are able. Take Care, Sara

By busyteacher
Posted October 8, 2009 at 5:53 pm
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My son is now 18. He was three months old when this happened. I had not had problems with adhesions until recently. It's actually coincidental. The conditions were unrelated, and his bowel was only perforated because they used the wrong barium enema, instead of surgically removing the obstruction, which is protocol for an infant.
With my kids being so big, it's easier to "supervise" and less physical work than it used to be. I am fortunate to have had them so young.
Take care!

By Skinny
Posted October 9, 2009 at 4:03 am
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I didn;t have to stand any pain during the massage as she is very skillful and she only ever goes as deep as she can. It has taken a long time for her to get right in as she does now.

Skinny

By marycb
Posted October 11, 2009 at 1:33 am
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I have major problems with adhesions as does my son, Casey, also. Mine began with endometrisis even though I didn't realize I had adhesions until I developed ovarian cancer and had the "debulking" surgery (that means taking out whatever they can get their hands on). At that time they did lysis on the adhesions that they found (a number of organs were stuck together, but they came out anyway so that didn't matter). Since that time I have developed real problems with the scar tissue (adhesions) that formed after that surgery. My doctor says she feels "knots" of bowel when she does my exam. Yuck!!
My son, Casey has had multiple abdominal surgeries also, and he has a J-tube now due to his gut slow down from his adhesions ( he had lysis done on him at one time also, helped for about a year, then he was worse). He and I both have lots of pain and problems from this.
However, I suppose that having adhesions is not ALWAYS a problem as I had no real complaints before my cancer surgery, although I did have major adhesions even at that time.
There are several people on my cancer mailing list who have had the Sepra film inserted and they all say it has helped them tremendously.
Mary

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