Hi, Sunflower. I’m sorry you’re going through this, and it does always seem like holiday weekends are magnets for trouble. You’ve made a good list of possibilities - you might add cuffitis as another possibility, since most of us still have a small rectal cuff that the pouch is stapled to. Most folks seem to do best with a compromise between liquid and formed stools, with a texture like pudding. If you’re getting pieces then it’s probably too hard. It might be as simple as drinking more water. Only experimentation can tell you whether soluble fiber (like psyllium) makes things better for you. If you try to change only one thing at a time you’ll have better success figuring this out, but unfortunately that can delay a solution. Folks who’ve used lidocaine internally for the pain can perhaps tell you more about how it worked and how to get it.

Some things that might help, and are unlikely to do any harm, include warm sitz baths, plenty of fluid, and (as you’re doing) patient relaxation on the toilet. I hope you get some relief.

I seem to get myself in trouble because of stool inconsistency. When formed, it can be more difficult to pass, but not always. And yet I strain, feeling that I am seconds away from a satisfying release of gas and stool. Sometimes deep breathing and pushing is productive, but in reality if I push too often I make things worse. I get terrible pain and feel like there’s a stricture or I’ve caused a fissure. It’s been 3 years since takedown and I’m still learning. When I have symptoms like yours, I let my pouch rest a day or two and start back slowly, focusing on not straining which for me is very difficult.

I believe some gastros are on call with the answering service. I would call the office and leave a message for the answering service  to give a message to the doctor.

In the mean time, definitely increase liquids and please do not strain. I personally think it might be a stricture or cuffitis but only a doctor can fully assess that. I think a doctor should be able to assess a stricture in one visit depending on where it is, as far as treating it goes- I think that depends on how serious the stricture is, if it is one. I hope its not cuffitis but that could be a possibility too. All I know for sure is that you need a GASTRO'S appointment STAT!

I am sorry you are going through this on a holiday, I hope things get better! Happy New Year Sunflower! Shine Bright

Many thanks for these replies. I really appreciate it.

I spoke with the GI on call and she said that I could take Cipro in case it's pouchitis. My response was that I'm not taking an antibiotic for a possible hemorrhoid. It was a strange call. I had to ask whether it was possible that the issue was a stricture, hemorrhoid, etc. She said yes and that I could hydrocortisone  until I can get an appointment. She said a stool sample would tell if it's pouchitis. Why was she so focused on pouchitis when this feels like a structural issue? Ugh. So, basically, that was useless. You guys here are more helpful since you actually know what I'm talking about.  

If there's anyone who has used hydrocortisone, could you let me know if you put it a little inside with a q-tip?

My regular doctor is on a leave of absence so I don't know what will happen on Monday when I call for an appointment, but someone will be covering for her.

If anyone has had a stricture (at anastomosis) or hemorrhoid diagnosed, please let me know if it was in an office visit or if you needed a scope for it.

Thanks, guys. I appreciate that there are other people out there who know what this feels like.

Hi Sunflower70,

It sounds like a structure or as what happened to me. I sugest you give yourself an enema of warm water, not too hot, at least, once daily. I wasn't able to make things better by my diet. My cuffitis was producing scar tissue at the bottom of my j-pouch thus closing, narrowing the path out. My GI dilated it during a pouch scope. It didn't work very long. I was going to the Mayo Clinic and fortunate to then have a surgeon open it up surgically. It didn't last long. She showed us an image, I forget from what test, that clearly showed it was  narrowed/closing. I was giving myself 4+ enemas daily using the bidet to shoot water inside. I couldn't leave home over night without giving myself enemas. I also changed my diet dramatically and no help,

I had been treating for cuffitis for 3+ years. Yes there was a few centimeters of rectum remaining from my j-pouch creation. They called it cuffitis but it was like UC. I also was treating with various medicationsmfor that,

The enemas brought some relief as helped me from straining. I had surgery diverting to using a permanent ileostomy. 6 months later my j-pouch was removed ax resting it didn't help.  I could again have a life.

I hope I am wrong and you have a solvable problem that doesn't require surgery. Hopefully your GI will fix things during a scope or with medications.

The warm water enema tip is helpful. Thank you.

I have some bleeding that could be a hemorrhoid, with an otherwise perfectly healthy pouch, so I'm not going to start thinking about surgery to reverse my pouch. I'm sorry that happened to you, TE Marie. It sounds like you went through a lot.

Right now, I just want to think about how to get through these days until I can see a doctor and a diagnosis can be made. I'm not going to assume the worst. I plan to have my pouch for another 30+ years.

Btw, I don't have a cuff. My anastomosis was hand-sewn, not stapled, because the entire rectum needed to be removed. So definitely not cuffitis.

@Sunflower70 posted:

Many thanks for these replies. I really appreciate it.

I spoke with the GI on call and she said that I could take Cipro in case it's pouchitis. My response was that I'm not taking an antibiotic for a possible hemorrhoid. It was a strange call. I had to ask whether it was possible that the issue was a stricture, hemorrhoid, etc. She said yes and that I could hydrocortisone  until I can get an appointment. She said a stool sample would tell if it's pouchitis. Why was she so focused on pouchitis when this feels like a structural issue? Ugh. So, basically, that was useless. You guys here are more helpful since you actually know what I'm talking about.  

If there's anyone who has used hydrocortisone, could you let me know if you put it a little inside with a q-tip?

My regular doctor is on a leave of absence so I don't know what will happen on Monday when I call for an appointment, but someone will be covering for her.

If anyone has had a stricture (at anastomosis) or hemorrhoid diagnosed, please let me know if it was in an office visit or if you needed a scope for it.

Thanks, guys. I appreciate that there are other people out there who know what this feels like.

You are welcome, keep us updated

The pain you describe sounds like a fissure. You can use hemorrhoid cream to help numb it a bit. Try to strive for stool with an applesauce consistency (not liquid or solid). Fiber supplements will help with that.

Jan

I have to use warm water enemas as well - probably about 80% of the time. If I don't use the enema, I have to strain way hard and that hurts more in the long run. My new GI thinks that a 1/2 inch polyp just where my pouch is connected is preventing stool from coming out. I only hope it is that simple. It is coming out Thursday, Jan. 7. If I allow myself to dwell on the enema thing, it gets depressing. It works best if you just do it without too much thought.

I hope you find relief soon.

Just an update --

Because of Covid, I couldn't get to see a GI in person. They offered me video visits in 2-4 weeks. The on-call doctor prescribed Cipro, which I didn't take because I'm so sure from how this feels that it's a structural issue not pouchitis, which I never get.

Here's what I did to feel better: I sat in hot baths with epsom salts. I sat on a heating pad. I put a little petroleum cream just barely inside with a cotton swab. The difficulty empty got better. It stopped feeling that there was something in the way for emptying. The amount of blood went down.

I spoke with my internist via video and he agreed that I shouldn't take the Cipro and I should give this a little more time. If I don't continue getting better or if it gets worse, he's going to help me find a GI who will actually see me in person to take a look. From what I described to him, he felt that it was probably a small fissure, just as Jan has said above.

The problem with the pouch is that I panic if something isn't right (and is painful!) because I don't know what's going to turn out to be serious/ongoing and what's just a temporary issue. When I had UC, I knew every feeling/symptom perfectly and knew what to expect.

I'm grateful for this site. I think every GI treating j-pouchers should visit here to read about what it's actually like to have a pouch.

@Sunflower70 posted:

Just an update --

Because of Covid, I couldn't get to see a GI in person. They offered me video visits in 2-4 weeks. The on-call doctor prescribed Cipro, which I didn't take because I'm so sure from how this feels that it's a structural issue not pouchitis, which I never get.

Here's what I did to feel better: I sat in hot baths with epsom salts. I sat on a heating pad. I put a little petroleum cream just barely inside with a cotton swab. The difficulty empty got better. It stopped feeling that there was something in the way for emptying. The amount of blood went down.

I spoke with my internist via video and he agreed that I shouldn't take the Cipro and I should give this a little more time. If I don't continue getting better or if it gets worse, he's going to help me find a GI who will actually see me in person to take a look. From what I described to him, he felt that it was probably a small fissure, just as Jan has said above.

The problem with the pouch is that I panic if something isn't right (and is painful!) because I don't know what's going to turn out to be serious/ongoing and what's just a temporary issue. When I had UC, I knew every feeling/symptom perfectly and knew what to expect.

I'm grateful for this site. I think every GI treating j-pouchers should visit here to read about what it's actually like to have a pouch.

Glad you are doing better

I panic too. We have been through a lot and it is hard to think about more. So sorry for your problems.

Dear all,

My pouch was good for almost 19 years, though the last few years I noticed the need to start putting pressure in order to empty, which caused swollen hémorroïdes internal and external. And also twice flebitis in my right leg, none of the doctors would recognise the link between putting pressure to evacuate the jpouch and swollen uncomfortable  veins in the leg.  I was told to drink a little amount of olive oil (2 table spoons)  on empty stomach which did help then I started having to deal with strictures which were surgically dilated 3 times but although I use daily a dilator, it still feels like the opening is continuing to tighten up. So I was told to use a Medina catheter and a water enema which are really helping to empty the pouch and the hémorroïdes seem to be less of a problem, so the discomfort in the leg.  I find the dilator uncomfortable but am determined to use it as otherwise I would have to revert to a permanent stoma. The pain you all have described is just what I have had before discovering the catheter and water enema. I also panic at the idea of going through again another major op so I am trying to help myself as much as possible. One thing that cause a lot of pain because of the stricture is eating something which is not easily digested or chewed enough which can cause a painful partial blocage then with the help of liquid diet for a day or so and the catheter I have been solving the painful episodes. Unfortunately I have a good appetite and enjoy healthy food with plenty of vegetables which are becoming a problem, I can make soups but loved and missed  how I used to be able to eat. Now I need to be super careful. On days where I have eaten the right things I empty the pouch with enema (once) and catheter(twice) after each meal and feel good in between. My problem is definitely not pouchitis as most doctors were assuming at first but a functional one, so the stricture and a slightly out of best position of my pouch exit! I need to twist and turn the catheter and enema tip to find the entry!!!
Sorry I wrote such a long message but hopefully it can help someone, we all have different issues and problems. Wishing all a much better 2021

Patrizia