Advice Wanted Long Post

Hello not been around in a long time here, been through alot of surgery.

I had surgery in December 2019 to remove a stricture in an old anastomosis site where my colon and small bowel were resected many years ago. The colo rectal surgeon did this laparoscopically which he should not have...

Instead of doing what we agreed upon he ended up removing a 2 foot piece of small bowel because he found other areas. Then he put this piece back in me. So I left this surgery with two anastamosis or a double resection. One is large bowel to small, one is small bowel to small bowel.

In feb 2020 I started having infection. I had an anastomosis leak. Eventually I had a fistula, and several abscesses. I was in the hospital every month for a week in 2020. Eventually I left with a drain bad for the abcesses, and this kept me out of the hospital.

In Jan 2021 I had another surgery to remove all this infection, abcesses, fistula, and the drain bag. Bascially the new surgeon I found repeated the same surgery as before only removing a few inches of small bowel, and a few inches of the large bowel to small bowel resection. Another double resection. This was successful, and all the infection is gone. No bags, tubes, abcesses, fistula or anything.

Now... I am having a different problem I have never faced before. First I have to be on constant antibiotics. Cefdinir, and flagyl. This keeps gas down. If gas moves through this 2 foot piece of intestines that has been resected on both sides colon to small bowel, and small bowel to small bowel then the pain and uncomfortableness of it all is just unberable. Antibiotics keep it ok.

I am also going to the hospital with what they are saying is transient Scar tissue obstruction. The doctors are telling me that it is from scar tissue. These obstructions pass, but I spend a week in the hospital not eating and on liquids. On a good note my weight is up I have 30 plus pounds of extra weight on me and it is ok to do liquids when needed.

I had a colonoscopy last month. No active disease, everything wide open. The GI went through the 2 resections with a pediatric scope and said it looks "beautiful". I had an upper g.i. in the hospital last week with small bowel no obstruction wide open. Keep in mind when these tests are done I have had liquids for 3-4 days and nothing solid. I am going for an MRI next week with contrast as my final test.

I am thinking that this part of my small intestines that was removed by the surgeon is just not taking in my body. It is just not healing. It is not going to do well enough to become strong enough to be able to move stuff through it.

I have contacted my surgeon again the one who did the second surgery above. I was going to ask about just removing this 2 foot piece of small bowel, and hooking my small bowel to colon where I would just have ONE SINGLE resection. Just one Anastomosis instead of two. I am thinking this would give me a better chance of everything healing together better. Right now if I eat very much solid food I can feel that obstruction pain those waves depending on how much I eat which again is just very little. It takes about 10 hours or so before this happens, because it has to move all the way through most of my small bowel before I have trouble. Liquids seem fine, but I don't want to survive on liquids. I don't want to live constantly worried about obstruction.

I do have alot of small bowel left so that is not a problem. If this 2 foot piece were removed I would still be left with plenty of small bowel.

Just wondering what you guys think, and if another surgery would be worth a shot at fixing this?

Is there another surgeon you can contact for a second opinion? I would be wary about going back to the first one if he bungled it before.

Also, what maintenance meds are you on?

And that long on antibiotics can be dangerous with the risk of c. diff. Yes, I am aware that they are used to treat c. diff., any good doctor will tell you they can also CAUSE c. diff. (I've had c. diff. 8 times.)

That makes sense. I wish you the best!

Sounds like your best option. Hope the surgery works out for you, and I'm sure it will. Best of luck going forward.

So I had surgery, and I have pretty much recovered from it. By that I mean I can walk and stuff now without having to use the walking cane to go to the mailbox. I can drive some if I wear an abdominal binder.

I did develop if I can spell this right a Hematoma after surgery like a couple days after surgery in the hospital. It was a big ball next to the incision. Surgeon said this would resolve on its own and they would not lance or drain it since it had jello like old blood inside. They don't know why this happened but I have an idea.

I went home 3 days after surgery. As I was about to leave this hematoma started draining all over my lower body most likely because I was walking around alot. I really wanted to go home so I did everything they asked me to. As it drained this bruise like looking colors formed all over my legs and and abdomen; just plain awful looking but not painful. Nothing to worry about the surgeon said and she was correct.

However my um private parts turned black as the blood drained into that. It was scary but that is all it was... scary. It resolved there was no pain only fear. This was all the blood draining and making its way out of my body and the doctor explained about the anatomy of how that was the perfect path for it to go into. But again yha that was something else to see that part of my body black. It is fine now and the correct color again.

I still have three little little holes where my incision was at about the size of a ball point pen. The remining blood still drains out and I change the bandage on there every day. It is much smaller now and almost gone. I have to push deep inside to feel the ball at all so maybe another month and this is good. The main problem now is the tape from the bandage. I can reverse the bandage and tape it to the inside of my shirt, but it does not drain out as well. This helps alot with the red skin from the tape but I have to clean the wound out much more thoroughly since the blood just sits inside the skin there next to the holes then dries up. Taping it to my skin means the blood from the hematoma drains onto the bandage much better, but doing that means I have skin irritation. I really feel for you guys with ostomies.

I can eat with no fear of blockage but do avoid fiber as instructed religiously. I read everything much more thoroughly now on my food labels. I did by choice remain on antibiotics. My G.I. has tried to talk me out of it but I am going to stay on them for a while at least until my incision is completely healed up. I feel MUCH MUCH better being on cefdinir and flagyl daily. I was getting tested alot for c.diff but always negative so the watery D on some days does not concern me much.

I can also tell you that I do believe now that imuran was responsible for me having such nasty infections. I have not taken that and will most likely never take that stuff again.

I have been doing alot more research on Crohn's. I know this is old news to many of the long timers here but I am looking into anti map now. I am convinced that is the reason I have this disease, and I want to try the antibiotics and see if they help. It just all makes sense to me now. I know it is like two years of antibiotics but I am ok with that and that will be my next move.

I don't eat beef, milk, or anything related to cows. Everytime I eat beef I feel worse. I don't think it is the digesting part of beef either. I eat alot of pork bar b q and have no problem with that. I eat alot of salmon, and other fish with no trouble. But beef always gets me feeling worse.

I am still on Humira.