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Adhesion Related Disorder

Jun 26, 2016 1:27 PM

Hi! I'm new to this site. I suffer from Adhesion Related Disorder and am looking to connect with others suffering from this. Is there anyone out there with this diagnosis?

Jun 26, 2016 1:55 PM

Hi. Welcome. There are a lot of undiagnosed people here so it's quite possible someone has it and doesn't know yet. Would you mind explaining what adhesion related disorder is and some of the symptoms? I'm sure that even if no one has the exact same thing that someone will be able to relate.

Jun 26, 2016 3:02 PM

Welcome to the community family Paininmyas! I'm sorry that you find a need to belong to a pain group, as with everyone else here. We are a diverse group with various ages, problems, & locations. But we all understand what chronic pain is and how it affects our lives. You'll find a lot of support here. We rant, rave, cry, complain, express joy and relief, and support each other.

I had to Google this because is never heard of it. But omg! My doctor's have told me, every single time I've had surgery, that they had to clean out adhesions and scar tissue that was sticking to all my organs. I've had 7 abdominal surgeries and each was complicated by adhesions. I'm pretty sure after reading the info I have this. I'm not sure why my docs haven't mentioned it, since adhesions tend to be a major complication in every surgery. It's caused issues with multiple organs and blood vessels. And now after major (5 in 1) surgery in 2010, I'm convinced I have more developed that's affecting my small intestines. I can relate! And I'm pretty sure many others will too. Hugs & prayers for you as you find support and coping mechanisms to help you through this! 🙂💕🙏🌼

Jun 28, 2016 3:33 AM

Adhesion related disorder is when thick fiberous bands of tissue (like spider webs) grow within the abdominal cavity connecting organs and other tissues together. The cause is most often abdominal surgery but can also be caused by endometriosis. It can affect the entire digestive system, bladder, reproductive organs, and abdominal wall. Likely symptoms include: chronic pain, nausea/vomiting, weight loss, constipation and/or diahrea, and bowel obstructions. The only current treatment is surgery to cut the bands of tissue. However, surgery causes more adhesions to form. So there tends to be this vicious cycle of surgery to "clean up" the adhesions with only some temporary relief then new adhesions form. Most often with greater intensity.
My story started when I was born. At the age of two days old I was found to have a twisted bowel which required an emergency bowel resection. Then a severe case of endometriosis. Then came the severe pain and infertility which required a complete hysterectomy at the age of 30. A couple years later the severe pain returned. I then was diagnosed with remnant ovarian syndrom and underwent an open laperotomy . A couple years later the pain again returned. Another surgery to tell me I'm full of adhesions. Total of seven abdominal surgeries and I've had four bowel obstructions. I have chronic pain, nausea/vomiting, and constipation with intermittent diahrea.

Jun 28, 2016 10:19 AM

Except for the nausea & vomiting you've described my history. After my 2010 surgery, where I was intubated, I have not been able to throw up. Then I had an EGD to stretch an esophageal stricture and I've thrown up twice, injuring my neck discs. I had hiatal hernia repair with fundoplication surgery on the esophagus last month. The doc doesn't want me throwing up & I'm on zofran to prevent it. But the constipation/diarrhea has been going on for decades. I'd complain for years and nothing would be done. Then I'd develop a tumor, 3 different times, and when they opened my abdomen up is have severe adhesions connecting all my organs. Every doc has complained about how severe it was and how much longer each surgery took because of it. And they all said what you did, about they just grow back. I think my surgeries have averaged 3-5 years apart. It's sad that they can't find a way to reduce or prevent them from growing. I was seeing an oral surgeon to have my TM joint replaced due to deterioration. As soon as he found out about my internal adhesions and external keloid scars he refused to do it. He said the scaring would possibly tighten where I couldn't open my mouth. What type of doctor gave you this dx? Was it a specialist? I'm under 2 different GI docs; upper GI & lower GI. Thanks for sharing too. Hugs & prayers for a blessed day for you! 🙂💕🙏🌼

Jun 28, 2016 11:49 AM

Hi Flappsylady81! Actually, I havent been formally diagnosed with adhesion related disorder. I have seen so many docs and had so many diagnostic tests including surgery. And everything always comes down to adhesions. So when I found "adhesion related disorder" I knew that this is what I have. I would like to message you sometime if that would be ok with you?

Jun 28, 2016 3:15 PM

Sure thing. I use pain companion, which has private message ability. Are you using it?

Jul 30, 2017 3:31 AM

Tho this is not a term they used, this is what I have. :( My body grows tumors on the connective tissue around an organ (usually the intestine) and then calcifies, which strangles the organ and calls for immediate surgery (several bowel segments lost to this, as well as all my sigmoid and they made a J-Pouch out of some colon tissue and attached it to the inch of rectal stump I had left... ) They just keep telling me "it's adhesions, there is nothing we can do" and I am lucky to have a doc prescribe painkillers for now- tho I am afraid for that in the current anti-drug push... I would not function if I didn't have them... when it is terrible, I can still go to the ER thinking it could be another tumor, but so far... not for three years! They always think I want painkillers even tho I never want them. I want answers and a CURE!!

Jul 30, 2017 3:53 AM

I don't suffer from that disorder nor do I know anyone. But welcome to the group and I hope that you find comfort and friendship. I also had to say I LOVE your name!

Jul 30, 2017 4:30 AM

Oh, thank you! It is from the email name I used in college. At the time, I had a Service Dog that was a rottweiler. I was an art atudent, so... well. GRIN She passed away long ago now but most still remember me sculpting or throwing pottery with my Rott... so I have kept the name! Thanks for the welcome!,

Jul 30, 2017 6:08 AM

Welcome! I don't have that condition but we all just are friends here with diffrent conditions!

Jul 30, 2017 6:32 AM

Welcome to the community RottAndArtist. We are very supportive.

Jul 30, 2017 9:28 AM

Welcome to the community. It is so nice to find people who REALLY understand and are supportive. That's what you'll find here. 👍

Jul 31, 2017 11:25 AM

Thank you all for that! I am headed to see one of my specialist surgeons in a few days... a six hour drive! But one of the things we'll be discussing is if he and a colleague might be able to do a surgery that would remove some diseased organ tissue as well as a fistula that another doc tried three times to fix, and failed- it leaks bowel liquids so is a serious concern to me. Kind of excited he might be able to do both in one surgery... but of course, anxious because... one more surgery! Ack!!

Jul 31, 2017 11:35 AM

Oh my gosh rott. I feel so sorry for you. 😞 I really really hope and pray for some success. You deserve to get some help. I will pray they can fix it ALL!🙏🙏

Jul 31, 2017 11:37 AM

Good luck I will be thinking of you 😊💕

Aug 02, 2017 9:38 PM

Wow until now didn't know of this issue. I had abdominal surgery for intestinal obstruction. I was so constipated and couldn't go no matter what. Well I ended up in we with acute abdominal pain and distention( extreme bloating of abdomen). They saw an intestinal obstruction. After a 6-7 hour surgery I was told I had adhesions that had attached to my intestines all over coming from below. My PCP thinks it came from my lower spine because of scar tissue. I remember when he saw me in the hospital as he was leaving ( he didn't know I heard him) he said until the next time! Crap that's been 4-5 years ago! This is definitely part of the reason I'm experiencing so much low back pain I think. Who would of thought! Good luck in your diagnosis. Am going to talk to my PCP about it myself. Thanks!

Sep 26, 2017 10:40 AM

Hi all - I have similar symptoms. Ruptured aneurysm, many abdominal surgeries, total hysterectomy with endo, and removal of anything that the adhesions can gum up. I had 2 surgeries for adhesions and appendectomy last fall 2 weeks apart. The second surgery showed new adhesions forming across the abdomen and peritoneal cavity. My main problem is bowel spasms where they adhere to the abdomen wall. Does anyone have similar issues? The pain is hard to manage and took years to get anyone to recognize the link to the previous surgeries.

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