recurring abdominal adhesions

Posted by lstabenow@gmail.com @lstabenowgmailcom, Oct 23, 2011

Does anyone else out there have problems with abdominal or pelvic adhesions? I have had several surgeries and have constant pain. Its really affected my life in a negative way. I have always been a very optimistic person, but I am feeling very overwelmed after my last surgery.

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Profile picture for lasirvent @lasirvent

Is this a low fodmap diet?

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Hi Lasirvent. My long post on the bowel management ideas was quite awhile back, and I just received the question about low fodmap. Sorry about my delay in response, as I had to get reoriented. My bowel regimen is working quite well. While I do the low fodmap partially, by default, while managing food choices that work and do not work, the other elements are just as impactful as the fodmap choices. The prescription component is the linzess, which I will likely need for the rest of my life, like a few other meds. (Such is life) .... but the miralax is what I am able to titrate, along with the different types of fiber, fats, and proteins. Liquids are an absolute. I do not allow the stool to get firm. I try not to overload the bowel with heavy/dense fibers. I am now able to freely eat raw greens, except for kale, and other raw vegetables carefully. I always fall back on soups ( low fodmap). The biggest low fodmap shifts have been green onions (vs regular) plus generally substituting vegetable options for the grains. I have increased olive oil as well. these dietary strategies (in a nut shell), along with my regimen of heat, positioning, hot drink (and the linzess... which I did not want, and have tried going without...) have shifted my life. They have allowed me to move forward with my life. I hope this helps, and I hope you discover what works for you. It is multifaceted for sure. Have a good new year!
UP Artist

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Profile picture for sunnshyne @sunnshyne

I don't have time to really think about the memories. However, my health has decline tremendously and I'm receiving social security disability. Although I've been through a lot but I think it's ridiculously that it has taken 2 yrs to get a favorably ruling for my disability and additional 6 mon before receiving my first check. So, I'm working to have Adhesion & Pelvic Disease added to Soc Sec Disability Compassionate List. This would allow for a disability ruling within 30 days.

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Hi @sunnshyne !! I read your post and I was wondering, were you able to add adhesion and pelvic disease to the SSA disability compassionate list? I’m considering applying for SSDI due to the severe adhesive disease that I deal with. I’ve had multiple surgeries where adhesions were removed and they keep reforming. I’ve had a couple SBOs and I’m in constant, mostly 7-8.5/10 pain and I am now on short term disability through work due to the pain. Thank you for your help and I’m so happy that you were finally able to receive disability.

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Profile picture for carlwgordon @carlwgordon

Why is trying to stretch and massage bad

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How are you now?

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Profile picture for Kay @foxfire

I have had 2 open surgeries The first to remove a liver cyst The second to remove gallbladder followed by a bile duct tear needing to be repaired with rou en y As a result I now have pain and bloating 2 years later . It seems to be scar tissue . Any suggestions for relief from this

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I have gastroparesis. My GI doctor sent me to a pelvic floor physical therapist. One of the treatments she did was for adhesions. It did help my abdominal pain.

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Profile picture for mdl555 @mdl555

I have gastroparesis. My GI doctor sent me to a pelvic floor physical therapist. One of the treatments she did was for adhesions. It did help my abdominal pain.

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Thank you

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Profile picture for Kay @foxfire

I have had 2 open surgeries The first to remove a liver cyst The second to remove gallbladder followed by a bile duct tear needing to be repaired with rou en y As a result I now have pain and bloating 2 years later . It seems to be scar tissue . Any suggestions for relief from this

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Just received the news that due to previous myomectomies my uterus is dense in scar tissue and my small intestine is wrapped around it. My Dr wants to take out my uterus but am worried about the scar tissue around my intestine

What can I do to improve my chances?

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Profile picture for AVOCADO1 @avocado1

Yes, I can relate. I believe I have been dealing with lots of gastro issues- involving both abdominal and pelvic areas- for close to 28 years now, and I think the culprit is adhesions.. My abdomen and pelvis feel totally frozen! Forget kegels- nothing moves! Although, unlike in your case, I have never found a physician who was even willing to discuss the issue of adhesions, nevermind attempt to operate on them. My pain and problems have always been chalked up to IBS which of course is totally useless. I've done everything diet-wise, been to physical and massage therapists as was recommended, but no relief. I feel as though I'm being strangulated from my upper abdomen to my pelvis. My symptoms cause me great grief on-the-job and has meant virtually no personal/social life all this time.

One argument I often read about regarding adhesions is that they do not show up on imaging tests and it takes more than mere suspicion that one has adhesions to justify doing an exploratory lap to find them. I recently saw on a website called EndoTimes about one woman whose adhesions were visible on a barium swallow test. I also wonder if a barium enema would show them. If this is true, it seems odd that nobody noticed this before or were we not supposed to know we had adhesions? It is definitely not a popular topic but if you google it there is tons of info describing the pain/problems they can cause as well as various attempts to come up with an effective adhesion barrier so you know that those who say that adhesions don't cause pain/problems are either lying to you or just don't want to deal with them.

I also have read about adhesions being visible on what is called a Functional Cine MRI which is being used in Europe but I have not found any info on its use for finding adhesions in the U.S.

The physical therapists, as well as a medically-oriented massage therapist that I now go to all have said that I have a lot of very tight adhesions. I was able to have an exploratory lap about 20 years ago where they said they found nothing but recommended a hysterectomy due to fibroids which I didn't want at the time. But what was interesting was that I got 2 weeks of relief from my symptoms- my abdomen shrunk in half, but then everything slowly started tightening up again and I was back where I was before. I didn't know about adhesions back then but now it is the only explanation for that wonderful but brief reprieve from my horrible symptoms. The doctors who did the lap said nothing about adhesions and could give me no reason for my brief improvement. Supposedly it was 'psychological' that I just THOUGHT I was better but believe me the change in my symptoms and appearance was radical!

I finally had a vaginal hysterectomy about 12 years ago which did nothing to help and I don't think the surgeon even looked for adhesions as he was several hours late due to having to delivery a baby and I have actually had more pelvic floor problems ever since, like symptoms indicating a fistula and a constant infected feeling on my left pelvic side and it has a terrible odor but when I tried to get help I was treated like I was nuts.

I'm trying to find a gastro who will try and find a cause for my problems and not throw me under the IBS bus again. I really don't know where to begin. I tried going to a colon-rectal doc in my area for the possible abscess/fistula in my sigmoid area but he only spent 5 rushed minutes with me and left. Obviously not interested! When I try googling for adhesion doctors I always come up empty.

In your case, once you had adhesions removed, were you given any advice as to how to try and prevent their return? Like going to a massage therapist? I've also wondered whether blood-thinners would help or even certain anti-biotics to prevent infection. Also, were any barriers used? And were your adhesions just lysed or cut? I have read that while lysing is safer, cutting and removing what they can is more effective. I have also read about 2nd and even 3rd look laparoscopy where, a week or so after the initial surgery, they go back in and remove any new adhesions that have began to form. Supposedly, at this early stage, the newer adhesions are softer and easier to remove, leaving less damage and making it less likely that new ones will form or if they do, they are less likely to cause issues. But I'm sure that insurance companies would not like this to be SOP as from what I've read, if they pay anything at all it is not much which I imagine doesn't make adhesiolysis a popular procedure for surgeons.

I have read of some patients leaving the U.S. for help with adhesions. A place in Germany comes up a lot. I wish I had the nerve to go there myself but then don't think I should have to. If I could find the right doctor, I'd even be willing to discuss paying so much $$$ out-of-pocket if needed but like Dr. Oz said on one of his shows, doctors don't like to talk about money but they really should be willing.

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@avocado1 Hi, so sorry about your situation. I have a similar case and in excruciating pain that is damaging me mentally and physically. It aches that in thus modern times there's still no concrete solution for adhesions.
I wish to find out how you're doing now, and if you know or have discovered any solution to this. Thank you

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Profile picture for thenameisliz @thenameisliz

Hi everyone, I am new here and wanted to reply because I’ve had over ten years of experience with our lovely friends, abdominal adhesions. I also noticed that some of you mentioned the Pelvic Pain Center in Birmingham, Al. This is near me and as of two weeks ago, an absolute godsend. I don’t know if I can help but I’m going to share my story and if nothing else, leave a recommendation for an amazing doctor for adhesions. In 2009, I was often checked out of school to be taken to the emergency room with severe pelvic pain. It hurt to sit. Sometimes my whole stomach burned and I felt like some parts were trying to pull down which was very painful. The ER couldn’t find anything on the MRI or the vaginal Ultrasound so I was always sent home. My Dad raised hell every time. They recommended I see a gynecologist so I did. For several months, I tried different birth drontrs to control my periods as my doctor suspected endometriosis. She put me on seasonique and it helped to an extent but the pain didn’t stop. I was told to go to a gastro because I would sometimes go two weeks without having a bowel movement. This would obviously be a reason for pain but it did not always account for it because sometimes I had good weeks. He told me to change my diet and do take colace, I did. No luck. He didn’t offer a colonoscopy because I was 17. Eventually my gynecologist agreed to do an exploratory laparoscopy in Feb of 2010 and found that the entire left abdominal sidewall was obstructed. My intestine attached to the sidewall, the ovary adhered to the intestine, and the Fallopian tube to the ovary. I had a lot of dense connective tissue but she did not diagnose me with endometriosis at this point. I had gotten pregnant while using birth control and condoms in September of 2011 and I lost the baby within 48 hours of finding out. I took multiple tests and all were positive, even used different brands. I’m not sure what happened. By this point, the gynecologist who had done my surgery had released me and wanted me to see a pelvic pain specialist because she felt there was nothing more she could do for me. I was an idiot and kept coming back because I didn’t want to drive 45 minutes further in bad traffic so I saw a didfeeent doctor there. The other doctor said there was nothing she could do for me since I had already passed the fetus. So that was that. I had went to see a gastro in between 2011 and 2016 and found that I have GERD and Gastroperesis which is stomach paralysis among other disorders. In 2016, I go back to the office with severe lain and a cyst is found. I follow up a month later and it had not burst on its own so surgery was scheduled. The cyst was found on my Fallopian tube and removed. I had some scar tissue but she said it wasn’t too bad. I had the mirena at the time and had gained like 50 pounds. She also managed to cut me vaginally with the speculum while removing instruments post surgery and didn’t tell me or my family. I discovered that when the stitches started falling out after I had suspected something die to the amount of pain I had been in. I called and asked wth happened and they said that I was bleeding a lot and had to be stitched and she’d tell me when I came in. Needless to say,after my follow up, I did not see her again. I finally got the guts to see her colleague although I’d never consider using that practice again had my friend not raved about this woman in 2018. I told her I was having severe pain and couldn’t wear tampons, etc. Thanks to that woman, I have a serious case of vaginismus. The severe pain from 2009 returned with a vengeance and I was determined to push through. I had my mirena our and lost 43 ish pounds. I refuse to have it put back in. My doctor tries to convince me that the pain is from the vaginismus but that doesn’t explain the 27 day period that an increased dosage of birth control can’t control. I bring my old post-op report because I am certain I have adhesions again. It hurts when I lift my arm like I’ve got a pulled muscle times 100. I get sharp pains when I move, and I don’t go to the bathroom for weeks no matter what I do. She agrees to the surgery. She orders no bowel prep and makes ONE incision in my belly button. She comes and tells me she didn’t find anything. Nah duh... you obviously didn’t look! She told me my bowel sure were very full and I needed to see a gastro doctor. I’m furious. This was a complete waste. She butchered my belly button and I have marks from the scope embedded in my skin two months later. She also did a bladder scope. I had clots the size of eggs in my urine and she wasn’t concerned. I went to the Er and I had ecoli all while she was telling me there was no way there was anything wrong with me because she performed the procedure perfectly. The gastro doctor does a colonoscopy and finds nothing. The first bowel prep didn’t work, at all. I finally get in to see Dr. Alex Childs at the pelvic pain center. I waited four months on this appointment and I had found him and scheduled it myself. Before my surgery, my doctor had told me she thought it was a great idea. I see him the next month and he checks my abdomen and is looking for the other incisions and I told him the only fresh one was the umbilical. He said he may be biased but there’s no way she could rule out any disease or make a diagnosis with one incision. He said he hated to take me back to surgery two months later but it was the only way to get to the bottom of this. He also did a pelvic exam and said my muscles not were in terrible shape and after the pt I’ve seen, they should be much better because she is wonderful. I agree to the surgery. He performs the exact procedures. The Lap, D&C, bladder scope, etc. I had a bladder lesion that she charged but did not remove and did not inform me of. Dr. Childs removed it and sent it to pathology. He ordered no bowel prep prior to the surgery as requested. This is a must if you think you have adhesions. They can’t see them if you don’t!!! Plus it’s too dangerous due to the risk of spilling bile into your abdomen so they can’t manipulate your sidewall and intestines if you don’t do the prep. He found bowel adhesions in multiple places. My left ovary was covered by bowel, and this showed on an ultrasound he ordered. Unfortunately the tech tortured me and pushed and prodded until she found it. I had bowel stuck to bowel. Bowel wrapped around my appendix, adhered to ovaries and Fallopian tubes, the bladder lesion, and a rectal lesion. There may be more but that’s all I can think of right now. Nobody took me seriously or would listen about my adhesions but Dr.Childs. He told me before the surgery that he thought it was the best choice over hormonal therapy. He told me e after that he was glad that he did the surgery. He saw me three or four times the day or surgery. I’ve never felt rushed or like my questions weren’t answered. I’ve been trying to get help for years and my family was so thankful for him. Not only did he help me, but he showed me proof of what was done and gave me photos and a dvd to take home. He sent several tissue samples to pathology. I’ve never had incisions look so nice from a surgery before. People come from out of state to see him. I paid over $1500 for the surgery so far and missed a semester of college but he’s worth it. If you are near Birmingham, Al and have any kind of pelvic pain, you will not find better than Dr. Childs. I’m sorry this is so long by the way. It’s a lot of history to pile into one post. I hope this helps someone.

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@thenameisliz Hi, so glad you finally got help. I'm really happy for you. I suffer from this exact adhesion pain but centered at my navel. The pain is excruciating. I've been living with this for more than 10 years. I was operated in 2021, but it has come back like nothing was even done.
I wish to find out how you're doing now. Are you just fine? Like really fine? I'd love to hear from you.

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Profile picture for sunnshyne @sunnshyne

Hey there! You describe a lot of things that I went through. I totally agree; if the physician you are seeing and you have agreed to surgery and they don't prep your bowels for surgery...please run, I mean really fast. Because if they accidentally cut your intestinal, what ever is in your intestine has now contaminated your entire abdomen. I had my first surgery in 1988, I was 17 yrs old; I sustain a gunshot wound to my pelvic and because the gun was a 22 caliber the bullet bounced around and eventually stopped in my left buttock. I sustain injury to my intestine, bladder and not to mention this huge hole in my pelvic. When I was shot I was at the very top of stairs going inside and I fell backward down the flight of steps. I was in the turning position because someone yelled my name and said to get down. Some person start shooting from one end of the block to the other end and I happen to be that unlucky person that was at the top of steps. This happen Boston, MA but I'm from Birmingham AL where I currently live now. Each time I had surgery my intestines were accidentally cut while trying to remove adhesion. My second surgery they suspected endometriosis but it was abdominal adhesions but my doctor still prep my intestines and had a colon dr on stand by.

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@sunnshyne Hi sunnshyne, I wish to know how you're doing now. I just want to get hope that something can actually be done about this wicked pain

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Profile picture for ciderridgecindy @ciderridgecindy

Before Dr. Childs was in practice all by himself, there was another Dr who established The Pelvic Pain Center. His name was Dr. Paul C Perry and he was an amazing Dr. I went to him because I had been operated on four times for the removal of adhesions that wrap around my colon area. I was having a lot of back pain and I was in tears everyday of my life. I waited about two months before I was able to see him and it was worth the wait. He spent about an hour with me before telling me to get dressed and he would meet me in his office. I learned that because of the previous surgeon who had operated on me four times before, had gone into my colon area in the same places over and over again I would now suffer from permanent back spasms for the rest of my life. If only I had found him first. Unfortunately Dr. Perry passed away about a year after searching for someone to help me. He was in the middle of training Dr. Childs and I became his patient. He is a good Dr, but Dr Perry was an exceptional Dr with a true gift. I wound up having to find a pain clinic to help me endure the pain. I tried physical therapy, a chiropractor, and any other procedure known to man before I would ever go to a pain clinic, but Dr. Childs had done all that he knew to do. I returned to him every four months to just check in and for us to check to see if there were any changes. I had to have another adheshion removal in 2013 along with some personal surgery and Dr. Childs preformed that surgery at Brookwood Hospital in Birmingham, AL. I continued to see him on a regular basis until I just questioned why. There was no reason for me to return every four months if nothing was going on in my body and he had already referred me to a pain clinic. Through the years I have learned how to control my muscle spasms with very little medication. so recently I started having that familiar pain in my colon area and I knew what was going on. The scar tissue had returned. I knew before seeing any Dr that I might as well get an colonoscopy done, so I scheduled that to be done first. After my colonosopy my Dr came in the recovery room and let me know that he thought that I was headed back to the operating room for adhesion removal. If you have ever experienced that pain then you just know what your body is telling you. I decided to call Dr. Childs and see if I could get in to see him and I got lucky because someone had just cancelled their appointment. I went yesterday and I had all my records forwarded from my colon Dr so he could see his notes. To my surprise Dr. Childs refused to do any surgery to get rid of these adhesions. Instead he chose to shoot me up with shots of Toradol and told me that he would see me every two months for injections. He also told me that he would inject Botox into my adheshion area that would cost $600 per injection before he would schedule me for any type of adhesion removal. He began to mash on the side of my colon area and told me that I definatly had adhesions and he hoped that these injections would help. I learned that the Botox injections wouldn't be covered by insurance and I also learned this morning after researching Toradol that this medicine will only last five days if it works. It just didn't work on me at all. The pain was awful after he mashed on me and the injections weren't fun either. I'm so glad that my husband drove me to Bimingham because we live over an hour away. Also I wasn't supposed to take it if I took Motrin or Aspirin which I do on a daily basis. Bottom line is that I can do all these injections and my insurance company will pay out so much money and then in the long run I will still have to have surgery to remove these adhesions. I woke up crying this morning because the pain is so bad. Dr. Childs knew what I was dealing with, yet he chose to do these useless injections. I won't be returning to him. I'm so glad that he has helped others, but in my case I would give anything if Dr. Perry was still living and doing his practice of medicine. My hope is to now find a Dr who will go in and remove these adhesions so I can stop hurting. I'm not saying that Dr. Childs is a bad Dr, I'm just saying that he has never helped me. Even the personal surgery that he did was a failure and didn't work. At some point you just have to ask yourself why you would continue going down a path that wouldn't work and I'm at that place with him. Best of luck to all who see him. I'm sure that he helps so many, just not me.

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@ciderridgecindy Hi, there
So sorry about your condition. Just to let you know you're not alone. I suffer from excruciating pain on a daily because of adhesions anchored around my navel. I've been operated once, but of course they're back. It just really sucks that in these modern age, solutions for adhesions haven't been found
I just wish to know how you're doing now and if you've gotten a solution. Much love

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