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So for the past year I have had some burning/minor pain just inside my anus on the left side. I had my annual pouchoscopy with Dr Shen back in December and I asked him about it but he stated nothing he could see.. I thought maybe an internal hemorrhoid ? but was told its very common to have anal irritation after a pouch redo due to the new pouch being sewn in so close to the anal opening. But in the past month or so, the burn has gotten a lot worse. I haven't changed my diet at all, so Dr Shen had me try Uceris foam for a few weeks which did nothing. He stated I should get an MRI to rule out a fistula... I scheduled it but I have to wait 2 weeks. I called Dr Remzi who did my redo and he stated if this started 2 years after the redo and I am not having any other symptoms like fever, chills, just feeling horrible, and labs are out of whack, which I have none of this, then he doubts a fistula. He stated I could get the MRI just to make sure. I do have some very minor stool leakage but I have had this since redo was done 3 1/2 years ago. I am hoping its just irritation, hemorrhoid, or maybe a fissure? I have heard nothing good about a fistula of any kind. But I have tried all the creams, and pepto with nothing helping. Last night I got a tip from the FB Jpouch group to try Vicks vapor rub. I put a little just inside and outside and it has helped a great deal. Not fully but it has helped.. Can anyone comment on my issue or if the Vicks is ok to use just inside anus ? thanks guys

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I have had the same problem for over 20 years and Dr. Shen has not found the reason (nor did Dr. Fazio or Dr. Remzi -- redo was done by Dr. Fazio).  I know that one part of the problem is severe muscle tightness.  Hard to believe or to identify but I've found that if I have some other reason for burning (e.g. too much bile or yeast) I tighten my muscles (guarding) and this increases the problem.  I use a lot of lidocaine -- in particular lidocaine/steroid ointment helps but stretching the muscles and pelvic floor PT helps too.  I'll try the vapo-rub -- never occurred to me.

 

scallop posted:

I have had the same problem for over 20 years and Dr. Shen has not found the reason (nor did Dr. Fazio or Dr. Remzi -- redo was done by Dr. Fazio).  I know that one part of the problem is severe muscle tightness.  Hard to believe or to identify but I've found that if I have some other reason for burning (e.g. too much bile or yeast) I tighten my muscles (guarding) and this increases the problem.  I use a lot of lidocaine -- in particular lidocaine/steroid ointment helps but stretching the muscles and pelvic floor PT helps too.  I'll try the vapo-rub -- never occurred to me.

 

Glad I am not the only one. My sphincter muscles were tested a few years ago with the manometry test and muscles were in normal range. Stretching the muscles sounds scary since I already have very minimal leakage since new pouch 3 1/2 years ago. If I put the tip of my finger inside to apply the vicks , I can feel a spot on left side that is a little sore. It does not feel like a lump or a hard spot, just a little sore there than anywhere else inside. But yes the Vicks gets a very cool menthol feeling at first , but after 5 minutes or so I barely notice that and I do get relief. I know its just masking the pain so have to wait till MRI to see what exactly is going on.

Bobbi Li posted:

I use the Calmoseptine and have great results.  I have never thought of using Vicks.  I know that if I eat something that I should not like sugar, I have more pain and have to use the Calmoseptine more often.  I think my issue may be because of Pouchitis that I have had in the past.

Calmo has never worked for me for this issue up inside. When I had some rawness on the outside it worked great.

Dr Shen kind of pissed me off because his only answer back to me was , to try hyperbaric oxygen therapy.. We have discussed this numerous time that its not an option for me. Too expensive, insurance wont cover it, and you have to do it almost every day for a few hours , and I work 11 hour days for a living. If I did these I would miss a lot of work, probably get fired and then have no insurance.. but he didn't even want me to try any meds to see rather just let me be uncomfortable . I have been with him since 2008 and seems like hes just ready to get out of OHIO at this point.

scallop posted:

I have had the same problem for over 20 years and Dr. Shen has not found the reason (nor did Dr. Fazio or Dr. Remzi -- redo was done by Dr. Fazio).  I know that one part of the problem is severe muscle tightness.  Hard to believe or to identify but I've found that if I have some other reason for burning (e.g. too much bile or yeast) I tighten my muscles (guarding) and this increases the problem.  I use a lot of lidocaine -- in particular lidocaine/steroid ointment helps but stretching the muscles and pelvic floor PT helps too.  I'll try the vapo-rub -- never occurred to me.

 

yes, I have noticed when it is sore, if I clinch my anal muscles it hurts more...

I don't want to hijack this thread away from the original question but, as I read through the posts, I have two questions. I'm wondering what the Vick's is intended to do? (Kind of like opening up the breathing with a cold?) 

The second question is regarding hyperbaric oxygen therapy. Dr. Shen also suggested it for me for a fistula but I'm not at all clear on the concept and how it is intended to work? 

Thanks for any clarification. 

Vicks is used to cool and comfort the area, relieves some of the pain.

hyperbaric oxygen is supposed to increase blood flow to the entire body and hep heal inflammation I guess.. But its very costly and usually its a drawn out battle with insurance to cover it, but still if you have high deductibles its very expensive out of pocket.. Also I believe you must go every day for a few hours for months. which anyone that holds a full time job that is just not feasible.

JHendrix posted:

I don't want to hijack this thread away from the original question but, as I read through the posts, I have two questions. I'm wondering what the Vick's is intended to do? (Kind of like opening up the breathing with a cold?) 

The second question is regarding hyperbaric oxygen therapy. Dr. Shen also suggested it for me for a fistula but I'm not at all clear on the concept and how it is intended to work? 

Thanks for any clarification. 

tell me about your fistula... I am going for an MRI tomorrow actually for this burning/pain about a fingertip length inside my anus that has been going on for over a year and just recently gotten worse in the last month. he wants to rule out a fistula.. hoping and praying its not.. He has saying forever that with a pouch redo the pouch is handsewn closer to the anus and irritation is pretty common and I get that. Had scope in November for a different issue but he didn't see anything there at that time..

My fistula goes from the dentate line to the vagina. It is not painful in itself. The burning and discomfort comes from watery stool that travels into the the vagina and burns the tissue there. It isn't painful in the pouch. 

I guess if oxygenation reduces inflammation this may reduce the incidence of watery stool(?)

I sometimes get burning inside the anus but I believe it is due to certain foods (spicy, tomato sauce and paste, etc.) and sometimes a hemorrhoid. 

I hope it's not a fistula as they seem to be ridiculously tough to treat. You'd think a 'tube' could be closed easily but it seems not!

@scallop posted:

I have had the same problem for over 20 years and Dr. Shen has not found the reason (nor did Dr. Fazio or Dr. Remzi -- redo was done by Dr. Fazio).  I know that one part of the problem is severe muscle tightness.  Hard to believe or to identify but I've found that if I have some other reason for burning (e.g. too much bile or yeast) I tighten my muscles (guarding) and this increases the problem.  I use a lot of lidocaine -- in particular lidocaine/steroid ointment helps but stretching the muscles and pelvic floor PT helps too.  I'll try the vapo-rub -- never occurred to me.

 

hi, still ongoing and when I get that burning pain I am now feeling burning in my left shin and top of my left foot. but yes when I squeeze my sphincters it feels worse. I have been told it could be a nerve issue from surgery, but maybe what you state is it, a nerve going through that muscle and when I tighten it goes down my leg ? it sucks and it hurts. my foot pain has been getting really bad recently

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