Gee, this sounds like more than just a GI problem. It would seem that you have spinal nerve irritation/compression in addition to your anal pain. Have you had any neurological tests or evaluation by a spine specialist?

Jan

Hi Mary,

First off I am so sorry...this is awful.

Next, what do you mean by pain around the waist? Is it muscular, internal or nerve pain? 

The anal pain sounds like a fissure...you are right. They are awful, painful, screaming pain. Sitz baths, local anesthetics and aloe vera gel (with local anesthetic built in ) can help.

The down the leg pain is another story. 

I am not sure if the 'waist pain' and the leg are related...often the 2 together mean sciatica (radiating pain) so you may want to look into that...sacroiliitis is also a possibility.

Sciatica can be aggravated by walking, sitting, pulling or pushing or lifting things.

Yoga, stretching and pilates can help. I use the pilates ball to stretch my back. Anti-inflammatories do wonders for a while but can lead to bleeding in the pouch or elsewhere and other problems so beware. 

Working in a pool does miracles. I did 6 weeks in a pool doing all sorts of stretching and resistance exercises (start out slowly) and almost recuperated my mobility totally and lowered my pain level significantly. 

(then I slipped and fell in a grocery store and set myself back 6 months but that is another tale).

My final suggestion is chiropractic treatments.  

Good luck and I hope that you find the cause of all of this and find a solution.

Sharon

Thank you for your replies. I have not had an awful lot of problems with my J pouch, but this is not fun.

My waist problem started Sept 2015.  I was doing a big shop and all of a sudden I started with this awful pain around the back of my waist.  The pain got worse and worse and by the time I got up to the checkstand I had to ask them if I could sit down.  Next thing I knew I was sitting in a chair with the paramedics taking my vitals. Fortunately I know the checker and she took my purse for safety and put my groceries to the side. I am a widow with no family in the area but wonderful neighbors and friends. My neighbors went back to the store and got my groceries after they learned I was OK and at the ER. 

At the ER they did an x-ray and found that I had a lesion on my 12th rib that looked as though it could be malignant. So off to see oncologist. Bone scan done, no cancer. Never heard more about lesion.  However, I have had this waist pain ever since. 

This morning I was in so much pain that I sent my GP a note asking for help,  but of course could not get into him as it was the first day after the holiday. He is a wonderful Dr.  He suggested I go to Urgent Care,, so off I went this afternoon. I always take my medical history as I have so many medical problems The UC Dr. was so nice. He did an examination of my "butt/anus" area and said I had about four to five fissures up there. So prescribed Lidocaine gel to put on about six times a day. I hope it is not an antiinflammatory gel as I am in Stage 3+ kidney disease and cannot take any antiinflammatories.

 My doctor has recently done ultrasound of abdomen, MRI of back (had fusion in 2013 and have arthritis and post polio), bone scan, etc. etc..  Everything is negative.  I get polymyalia rheumatica and every so often have to go on the steroids for that.  

Anyway told my GP what UC Dr did and he said if that does not work out, he will put me in contact with the ostomy nurses at the hospital  That makes a lot more sense to me than going through all the tests gastro dr. will do. I  had an endoscopy of J pouch in March and no pouchitis.  

Dr. today said no infection. He said a lot of walking could cause the fissures and I have a friend visiting from Orlando  (I live in Keizer, Oregon) so of course we have been doing a lot of shopping, going to State Fair, etc.  Thank you all for your replies.

Thank you all for your comments. Hopefully I will be on top soon.