The 10 minute pouch scope & exam results from today uncovered cuffitis, which was no suprise and the other significant areas of pain are adhesions - according to my surgeon, he could actually feel them when I pointed them out.

He did look at my small bowel test results before the scope and sent a prescription so it probably took him 11 minutes. He asked me what I was doing for pain, I said norco 4-6 a day and he said he'd see me next year and everything was looking good. (Color me frustrated.)

Hello I am in pain and how long do I have to suffer from the adhesions before they become tolerable? On to my Internist for long term pain management planning. Does the adhesion pain eventually go away?

Thanks everyone

Do adhesions just develop in time or do you just have them or you don't. Please explain, I had my take down surgery Oct 5,2011 is adhesion pain what I have to look forward to. Sorry If this sounds silly but i don't have much information about any of this. Thanks Anna

Why isn't your surgeon (gastro?) treating your cuffitis or is that the script he called in and if so, I do not like the fact he was just going to let you go a year without follow up for this.

I think the only thing that can help adhesion pain is additional surgery so maybe he did not want to address that at this time? Why did you leave the office without feeling satisfied as to a resolution to your problem?

kjeane, I was numb and he and I have discussed it before, I'm to see my Internist about pain management. They are both part of a huge medical practice with a couple of hundred doctors and numerous offices.

You know I admire your proactive medical approach! I thought I was prepared and had my questions written down. He only wrote the script for 14 supositories, which I didn't find out until I called the pharmacy. I have not seen my GI since we deicded to go forward and we figured out which doctor would be best to refer me to.

After the 14 days are up if I see a speck of blood I'm seeing my GI. He is in a different medical group of all GI's.

I didn't even get to see my scope on screen. I didn't see what he was using but he was looking at something and filling it up with air and then some water. There was no screen in the office, drat. (I need to visit my daughter in western NY and meet you at your surgeon's office for a second opinion, ha ha.)

Anna41, that's a good question. Everytime they open you up for surgery, scar tissue and adhesions usually form. I've had 4 open abdominal surgeries. That's why I hope your surgeries were laproscopic versus open like mine were.

Thanks ladies

Thanks for responding, I have had two open surgeries the creation of the jpouch and ileostomy which was not done correctly. So second surgery done at mayo clinic in MN to redo pouch and remove rectum.

Adhesions form within a couple of weeks of surgery. We all have them. Some have more than others. Just having them does not mean you have pain. The pain is due to the affect of their attachments, either to the intestines, other organs, or the abdominal walls. Sometimes nerves can get entrapped within the adhesions, causing yet a different type of pain.

So, there is no perfect solution to adhesion pain. They do not "go away" with time, although they can soften and relax a bit, or your insides can adapt and adjust to them. But, there is no schedule, per se, where you can mark the calendar and expect a resolution to the problem to evolve with time.

I know that sounds like a vague and crappy response, but that is just how it is. The only definitive solution is surgical release, and of course, further surgery carries the risk of more adhesions, which could wind up being worse than the present situation. Perhaps if an adhesion barrier film is used, such as Seprafilm, the risk is reduced, but not completely gone. So the typical position is that surgery is only if you are in dire straights, and most surgeons are not interested in opening that can of worms.

I would think the 14 day supply of suppositories is in case they are not effective or you do not tolerate them, it is not a waste (mesalamine suppositories are expensive).

Sounds to me like your GI is going to be the better "go to" doc for long term maintenance, as is often the case for many of us. Surgeons can often be as frustrated as us with these sorts of things. My philosophy is why keep going to the surgeon if he doesn't give you what you need?

Jan

PM Jilly. She has adhesion and after years of pain an narcotics is now having good results in a multi-approach pain MGMT program. She would be happy to share her experience with you.

Sue

I was going to say, but Jan touched on it perfectly that doing surgery to "fix" adhesions runs the risk of only creating more adhesions and problems.

I did have to have surgery for mine because they were causing me to non-stop throw up from strangling my bowel. I think it's only in cases like that where something absolutely must be done that they want to do something about them.

Toughenough,

My surgeon gave me a 30 day supply of anucort (3 a day -90 total) with two refills. I am on day 5 and still bleeding a bit so I am not sure 14 days is going to cure your issue or my cuffitis is more severe than my surgeon led on and thay is why he gave me a 30 day prescription supply. He said I had mild inflammation, but the bleeding is still there a bit and I am still irritated. Since I was bleeding a lot after the dilation I did let a day pass in between before starting back up on them.

You can ask for your pouchoscopy photos, assuming he took them. I never leave my surgeon's office without my pouch photos and any procedure I have I request everything be emailed to me even after my surgeon reviews them with me in person.

Some surgeons are not the best at non-surgical follow up and medication treatment which is why a good GI doc may help you out with some of these ongoing issues. Best of luck and hope the pain and bleeding improve.

There was no screen or pictures taken, it was in (ouch) blow up with air, (ubrer ouch) then use some water and he was moving something around (more pain). He old me I'd have bleeding after the exam, no crap and I'm still in pain, besides my regular pain, from the scope.

This leads me to believe he was not using a flex instrument, like Jan explained to me in the past. I'm not so sure that I'm going to him for the scopes anymore, am going to discuss with my GI.

My prescription is for Anucort-HC 25MG Rectal, 14 one a day before bed, hydrocortisine. kjeane you are on the same but 3 per day and 30 days! From what I've read on here, from several posters, I don't have much faith that is going to clear it up. I'm going to set up a GI appointment now. It will probably take at least 2 weeks to get in anyway, as it's not an emergency. Your case may be worse than mine kjeane, who knows??

At least the next time I see a toilet full of fresh blood I won't have to freak out as I'll know what it is.

Thanks for telling me about the adhesions, I was afraid they wouldn't just quit hurting. If I ever have surgery for them I'm finding someone that does laproscopic surgery and it will probably be at Mayo. On of my son's friends is a doctor there so I might get some advice from him. I'll wait a while as I'm just not up to surgery.

My surgeon said that it wasn't uncommon to have cuffitis like it was no big deal. It's a huge deal. He was trained at Cleveland Clinic and I don't blame him for the adhesions or the cuffitis. I'd had abdominal surgery before I ever met him and waited too long to go in when I had the hernia so it got larger. It is what it is. I'm going forward with a new game plan.

Thanks for responding everyone

Yep, sounds like the good "old fashioned" rigid scope, that I used to fondly refer to as the "chrome broomstick!" Never had another one of them since the fiberoptic scope was invented. However, not all surgeons are trained with the fiberoptic scope (it is a subspecialty). I think all board certified GI docs are though.

Jan

I was thinking, "oh no this is the one Jan was talking about" when I saw no screen,

My GI will be performing them in the future, he does good scope.

Did you have a "tilt table" too? Back in the day when I was getting the chrome broomstick (early 1970s), they would put me on a "knee-chest" table that tilted forward, putting my butt in the air. Tons of fun for a 16 year old girl!

Jan

Oh yes my butt was flying high. I didn't have to disrobe just pull down my pants, didn't even take them off. It was truly a 10 minute visit and broomstick is a good description. I didn't see it, just felt it, I immagine it was crome as it was cold too

I could not eat for 4 months until I could get the surgeon to do something. I am so sorry that you are suffering.