Pain still 1yr and 4Mth post Colorectal Surgery

Don't know if a capsule endoscopy might help, but it diagnosed my husband's Crohns when colonoscopy and endoscopy did not.

It’s possible you have developed bowel adhesions from your surgery and your intestines are being manipulated when you eat and it’s painful. Try eating low fiber foods, like a soft diet and see if it helps

Hi Karen. I have to repeat my capsule endoscopy next week bc my doctor’s staff didn’t tell me to stop taking carafate before the test. 🤦🏼‍♀️ Anyway, do you mind if I ask what symptoms your husband had prior to the test? I’m fairly certain I have Crohns but the doctor kept saying that it’s IBS. But now with my last colonoscopy she noticed two tiny ulcers at the end of my small intestine. Does your husband have mild Crohns? And is any medication helping? Thank you!

This sounds exactly like what I’m going through. I haven’t had any answers yet from my dr, I have a call in to surgeon. Sometimes the pain on the left side feels like a great lump is in there. It’s depressing living in pain.

I have been going through this since my appendix ruptured on a cruise ship in 2015. After airlift to the Azores, I had 5 hours of open surgery. Anytime you have abdominal surgery you get adhesions or scar tissue. Scar tissue on the arm is no big deal but in the abdomin it inhibits the movement of the intestines. You can’t see adhesions on any testing. Sometimes you can see where they have pulled things out of place. The only way to fix these is to cut them out during surgery. This just causes more adhesions. The more surgeries, the more adhesions. Sure surgery helps for a time but they all come back eventually. They can also cause an intestinal obstruction. If they do you may need surgery or just an NG tube and decompression in the hospital for a few days. I have had 5 surgeries and now my cecum which belongs in the lower right quadrant is now up by the left lobe of my liver. I am trying not to have surgery yet again.
This is why doctors don’t want to discuss this as they won’t do surgery unless you have an obstruction. It is indeed a terrible place to be.

One year and 3 months out from colon resection due to diverticulitis. My stools in the beginning were close to normal( formed, ) in the last four months they have changed to either pencil thin or larger flat ones. Or diahrea. Add pain in abdomen and what feels like a lump. The urge to go has diminished and I have to strain to have a movement, yet the stool is soft not like constipation. TMI I know but has anyone had similar experiences. It is becoming so I don’t want to go out always in pain.

Hi @judithclark
You took the words out of my mouth. I’m so sorry that you suffer with adhesions and bowel obstructions. You sound just like me, I’ve had 10 abdominal and pelvic surgeries and multiple adhesions removal during surgeries (I was born premature at 24 weeks and developed necrotizing enterocolitis (NEC). and I’ve had multiple bowel resection s and two bowel obstructions. It’s awful. I just had a doctor appointment today where my doctor asked me what else we could try for my 24/7 abdominal pain from severe adhesions and I just cried and said I didn’t know. I’m praying for all of us suffering.

It’s so strange to me that if you look up stuff about adhesions, most articles say that adhesions do not affect most people, yet there are so many people on here who suffer from adhesive disease.

That may be true. We don’t know how many people are not effected. Enough of us are effected though. I have had an obstruction twice that was cured by the NG tube. My last surgery was at Stanford last June for an incisional hernia and an adhesion clean out. I was great for about 6 months. Now I am in worse pain and abdominal issues than ever.
Stanford is doing some research on adhesions. I asked my Stanford doctor who is the chief of surgery, Dr. Mary Hawn but she wasn’t saying much. As I recall, it is a pill but is also inhibits the immune system. We have to wait and see.

They have a pill that they are working on for adhesions? To prevent or to clean out? That would be great if it worked.

The NG worked well on me too, no surgery was needed. I’ve heard though that when bowel obstructions are fixed with an NG tube and not surgery that the obstructions generally happen again since the adhesions are still there. I feel like I’m just waiting for my next one. When I finally went to the ER, and they said I had an obstruction, I realized that I had been dealing with obstructions basically since I was 7. I can remember all of the same symptoms and it would hit multiple times a month. I just waited it out, I didn’t realize that it was an obstruction because I never went to the hospital. I know now.

I’m so sorry that you’re in worse pain that before. That’s how I am too. I had a total hysterectomy last year and I’m in 24/7 severe abdominal pain, which is worse than what it was before my hysterectomy. They did 8 hours of adhesions removal and over a foot of small bowel resection during my hysterectomy. I had an obstruction 4 months after.

Did your hernia stay fixed? Or do you have another one?

I don’t know if I have a hernia again. It feels that I do. In June they fixed two hernias. They only saw one. I do have an opening that my transverse colon and cecum is pulsing through. That is what may need surgery though I will try to avoid this.
Hysterectomies also bring on adhesions.
I am working with a psychologist to realize that I have to live with the pain.