Abdominal Adhesions

[JerryNYC]

Over the years, a recurrent topic on this Board has been abdominal adhesions (you can do a search for these discussions by clicking on “search this forum” near the top of the page and entering “adhesions” for the search). This is scar tissue that naturally forms after body tissue has been cut. These adhesions can pull on internal organs within the abdomen and cause pain. I had my original surgery (total proctocolectomy and ileostomy for ulcerative colitis) done 58 years ago, with 2 subsequent intestinal surgeries. So adhesions have had a long time to grow. Over the years, the cramps and pain associated with my adhesions have gotten worse and worse and occurs daily. It is especially bad when it wakes me up while I am sleeping and may persist for hours. The only thing that helps me is an opioid (Tramadol) plus cannabis. My surgeon is very reluctant to do “adhesolysis” (cutting the adhesions during surgery) because, according to him, I have so many adhesions that it will likely cause extensive bleeding; plus it may well shorten my remaining small intestine to cause “short bowel syndrome”; but mostly because this surgery will cause new adhesions to replace the old ones. Has anyone had recent experience with abdominal adhesions? (A search shows that Steiconi has written about this in the past.)

[Mara]

I guess I am extremely lucky - I don't have an issue with adhesions and have had the same surgery for about the same amount of time as you, JerryNYC. When I had surgery to remove my 'female parts' about 20 or so years ago there was a separate doctor who dealt with the adhesions during the surgery. That was the last I ever heard about them....

Sorry I have no helpful ideas for you....

[To Dream a Dream]

I, too, deal with adhesions & the accompanying pain due to numerous gut surgeries over many years. I tend to avoid the usual meds (have had allergic reactions to most) & have turned to prayer & meditation. Also a heating pad, warm baths, reading inspirational material, etc. It has always helped me to cope by realizing that others are facing far worse.
On a more practical level, has your physician explored muscle relaxant meds for the cramping? Also a good GI doctor may know of a less aggressive technique than traditional surgery to relieve symptoms of strictures. They do wonders with endoscopic procedures these days.
Please look into this with your medical care providers. Chronic pain is debilitating. Keeping you in my prayers.

[ron in mich.]

Hi all i had resection surgery 3yrs. ago and my stoma moved from right to left side and the surgeon said it would only take a couple hours as he was going to do by keyhole surgery but ended up taking about 4hrs. and fully open surgery due to scar tissue.

[JerryNYC]

“To Dream a Dream”, Thank you. I always look forward to reading your thoughtful contributions. I actually have had first rate medical and surgical care at the NYU Inflammatory Bowel Disease Center over the years. I’ve tried most of the things you mentioned and many more. Yes, I find a heating pad relaxing but not very useful during bouts of severe pain. And instead of prayers, I’m embarrassed to mention that I instead find myself mumbling obscenities during these bouts. Muscle relaxant drugs tend to be good for issues with skeletal muscles but not for GI muscle pain. The pain comes from temporary intestinal blockages (which I get virtually every day). It comes when the gut is inflated due to a blockage (and gas production); this causes the scar tissue on the outside of the intestinal wall to pull on other organs within the abdomen. I got an idea of this when I first had an ileoscopy to examine the inside (mucosa) of my ileum. When the instrument was pushed into my ileum through the stoma, I had severe pain that then extended as spasms throughout my abdomen. The gastroenterologist was surprised at first because there are no pain receptors in the ileum. But then he recognized that distension of the ileum was causing the scar tissue on its outside to pull on other organs.

For general use during a severe pain episode, after many trials I ended up with Tramadol tablets. This is a relatively gentle opioid, because it has less potential for dependency and addiction than other opioids. But it takes about an hour before it takes effect, and a small dose of cannabis from a vaporizer gives a head start on pain relief within a few minutes. This approach was worked out with help from an anesthesiologist at the “NYU Center for Study and Treatment of Pain”. I also continue to get marvelous support from the medical director (Dr. Hudesman) and the surgical director (Dr. Remzi) of the “Inflammatory Bowel Disease Center” at NYU. Dr. Remzi (one of the best in the world at this) normally does most of his surgery via laparoscopy (minimal invasive surgery) but told me that he would have to open me up with conventional laparotomy surgery because my abdomen is such a mess with scar tissue adhesions that he would not be able to easily find his way around when using minimal invasive surgery. I have good and friendly relationships with all of these talented care givers and am thankful for how they have been able to help me. But I am always open to new thoughts.
(https://nyulangone.org/locations/inflam ... ase-center)

[Diane C]

Hi Jerry and all,

After my 4th or 5th OPEN abdominal surgery (lost count!) -- my colorectall surgeon told me that some people are more prone to scar tissue than others. I'm one of the lucky (?!) ones who gets it. She gave me all the warning signs of a blockage that scar tissue could cause and my last surgery was March 2020.

You are correct that more open surgery in the same place will likely lead to more scar tissue -- and adhesions. But due to the scar tissue, the doctors couldn't see what was going on when I kept getting bacterial infections so more direct, open surgery was necessary. At that time, one urogyn surgeon gave me a hysterectomy as the source of the ongoing infection was never found while my fabulous (new) colorectal surgeon cut away scar tissue and adhesions because they blocked the view.

Actually, the pain I feel is more likely from my ileostomy in 2018 -- or maybe from an abscess near my sigmoid in 2015 -- or when I had a colostomy in 2002. Hard to know. I've been seeing a good GI doc in Arlington, VA. He had written me a prescription to see a physical therapist for pain in my abdomen -- extending to the top of my pelvis down my legs. I saw her for several weeks and she was AMAZING! She manipulated the outside tissue on my abdomen and relieved pain in my legs. But for other reasons, at that time, exercise was difficult for me and for this to work, we needed a partnership where I'd be exercising at least 5x/week. I couldn't do that so we took a break intending to resume once I was exercising.

I contacted my GI doctor to say I'm now exercising and want to return. He said "some new Medicare medical issue" had arisen -- the situation changed -- and he couldn't give me a diagnostic code for the PT based on scar tissue pain. Huh? He did write a script without a diagnosis. The PT unit called and said I needed the diagnostic code. Around and around we went. I just wrote to him last week because I'll see him in June and asked him what was happening. I found the diagnostic codes but I'm not the doctor. So I can update you in about a month. I only know that this PT was immensely helpful and also suggested PT for pelvic floor syndrome (which sort of started my whole foray into gut surgery in the first place). But I'd encourage you to ask your GI doc if you can get physical therapy treatment if the PTs know how to help you.

This PT also told me to buy Cica-Care Silicone Gel Sheeting and place a small amount of it on my external scar. It's costly and apparently not covered by Medicare or insurance. You can find it on Amazon. It helped very slightly with pain if you want to try it. No prescription needed.

I also use a heating pad and bought a weighted cover for it so the heat would penetrate more and it wouldn't move around.

The PT suggested "accordion" breathing which you can find online. I do think any deep abdominal breathing helps but she recommended this. She also taught me how to massage the area lightly by stretching the skin in various ways lightly so I hope you can find a PT to help.

I do meditate but understand your lack of peacefulness as it's not fun. I searched online and supposedly some yoga positions can help. I promise to be better about checking the board and will get back to you on this.

Wishing you and all well.

[To Dream a Dream]

Much thanks to you both for your enlightening posts. Your willingness to share your experiences, painful & frustrating though they may be, is what UOAA is all about. So many hurting people out there will find comfort in just reading that they are not alone.
Jerry, if cussing & cannabis get you thru, so be it. I've been known to utter a few profanities myself having literally grown up amid the company of surgeons (the old fashioned out-spoken type).
Diane, it is so very good to have you on the board again. I have missed you. And you have my deepest empathy as you continue thru your own grief process. My dear & only sister willed herself to be released into a better realm without resistance a month ago. Never fighting the cancer. Her heart & spirit broken by the loss of her beloved husband a few years previously. Her decline painful to witness. Yet, I do know in every fiber of my being that they are forever reunited. Dylan Thomas stated it best: 'Though lovers be lost. Love shall not. And death shall have no dominion.'