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 Tonight, Sept 5,  I am in absolute agony: up in anus and J pouch, around my waist, down my legs, front of abdomen++.  Have so much pain and nausea, don't know what to do with myself.  I have a friend visiting and we have done a lot of shopping/walking etc.  As soon as I start walking or doing much,  get this pain around my waist, down my legs, around front of abdomen and in my anus++.  

Have had problems ever since  passed out in grocery store last Sept., and had terrible pain around my waist. Then they found lesion on 12th rib, thought it was cancer, but was OK.  I have never found out exactly why my waist hurts so much and swells. It starts as soon as I start walking a lot or stand for long.

Think possibly  have a fissure as it feels like there is a 'crack' upside my anus. Feel like I need someone to "hold my butt up" it aches so bad.  Know we have done tests and tests.  I know sometimes it takes a long time to find out what is wrong with me.  From 1994-1999  had so many problems but knew I was toxic so kept pushing the doctors. Final test showed that my J pouch staples had come loose and  was eliminating from two places and was toxic. They then redid my J pouch, Had I not insisted  they check further, I probably would have died. 

Have to do something as  can hardly stand the pain around  waist, pain down legs and in anus and up inside my J pouch..

Had my original J pouch done in 1984.  Anyone got any advice for me.  Having problems getting into gastro doctor. Did have an endoscopy in Feb and no pouchitis.

 

 

 

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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.

 

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