I get 'pressure' when I am on my feet too long or have been jumping around a lot...I feel a heaviness down there. But burning? No. Itching on occasion (could be yeast) .

Any possibility that there is a fissure or a tiny abscess?

Sharon

Probably all the above. Had it 20 years ago for 18 months or so, very badly and then it magically went away. Ready for the magic again! Had my pouch almost 44 years now. I often wonder how hard it will be to live with when we get very old?

Hope you are doing well! 

dpol posted:

I have over the last few of my 43 years with a K pouch felt burning/pain where my anus used to be . I have thought it may be scar tissue tearing or pulling on the other tissue down there. I, also sit a decent amount at work. Any thoughts,  Thanks 

I’ve had pain where my rectum use to be for nine years now. It is horrible. It hurts as bad as it would if a steak knife were jammed up my rectal area. It hurts that bad every second of everyday non stop for nine years. I’ve had everything imaginable done to get relief even having a hysterectomy in hopes it would help. I even had a nerves severed in my spine which left my right leg feeling like it’s wrapped to tight in an ace bandage and my foot is numb which make it hard to put on a shoe. My leg feels like when your leg goes to sleep and the feeling is starting to come back but this sensation never goes away. The only thing left is to get a pain pump or have surgery to remove the scar tissue that has my insides all stuck together. When I was twenty I had a ileostomy and wore a bag. Then had three operations trying to get the K-pouch to work and four operations on my behind because it would not heal. It drained and bleed for a year. During this my bowel twisted and had to have some intestines removed. The wound got infected and my abdomen had to be cut open and packed with alcohol soaked gauze several times a day for weeks as it had to heal from inside out. The gauze would stick to the inside so when it was changed it would rip tissue out with it. In 2010 my K-Pouch valve had major fail so had to travel to California to have it replaced with BCIR. It was about a year later the pain in my bottom started. I’m in to much pain to do anything. I never leave my house unless I’m being taken to the doctor. I’m only in my fifties and I’m facing what could be another 25 years like this. So I understand what your going through.

So sorry for what you are going through! Your issues are much worse than mine. My guess is mine is from internal scaring that is making the inside area very raw. Good luck !!!!!!

i have had xact prob, feels like im crappin razor blades, just had a pouchoscopy from new dr who told me my anus area is closing due 2 scar tissue, not really sure what if n e thing can b done, hope u find a solition.  i do feel ur pain.

I’m so so sorry. Way back when I had a rectum and ulcerative colitis my rectum was so raw and swollen from constant bloody diarrhea. Just sitting down to go to the restroom made my rectum hurt so bad I’d start crying. You have my sympathy. Your frankness is welcome. Feel free to express yourself to me as I know it feels good to say how we really feel to someone who can actually understand. It’s crazy I have constant pain where my rectum use to be like a broom stick up my bottom all the time. Please let me know what happens. I hope something can make it better soon. 

Im an artist. Not being up to painting is hard. I want to so badly. I’ve attached some of my art. I paint in pastels and acrylic and do felting art. What do you like to do when your able?

Robin, 

I am shocked at how badly your body has treated you...and I am so sorry.

This sounds like a healing disease. At the risk of sounding like a broken record (and I do repeat myself a lot about this) can you please look up Ehlers-Danlos syndrome...It is a healing/connective tissue disorder caused by the fact that your body does not create its own collagen or enough of it.

There are many kinds, most involve loose joints, stretchy skin, weak skin that bruises or tears easily, weak tissues and organs. 

I did not know that I had it until after 40. I kept asking my surgeons why each surgery was a failure and led to 6 others. Nothing ever healed properly. My nerves never came back when something was cut into. I never healed (scars took months to close or longer), things fell apart inside every time. 

No one could answer the 'why'.

At 40 I learned about EDS and went to see my GP...he looked it up and confirmed it through clinical testing...certain types do not yet have genetic markers...mine does not.

I am made of rubber, very stretchy joints, I dislocate constantly (knees, hips, shoulders...), I get lots of hernias (am all mesh inside now...) and my sutures tear through my skin. I.V.s are a nightmare having to be changed 2 or 3xs day...my veins rip or they can't find any...I get twists, occlusions, etc and lots of phantom pains...I make cysts.

So, knowing what is wrong can help psychologically but there is no cure. There are some treatments though. I take type I,II &III collagen, lots of glucosamine and other supplements, no longer do stretching exercises but resistance training and most of all, I warn my surgeons...and they do what needs to be done...meaning: Key-hole surgery instead of open surgery, using mesh repairs instead of sutures, when I need open surgery they close with 3 types of closures: staples, sutures and steri-strips applied after the staples are removed. They don't use the heavy white surgical tape that rips my skin right off. They only use permanent sutures inside (I know that they are more dangerous but at least they hold)...

As for pain, well, it is there, constantly. Not only the usual post-surgical pain but spine and joints too...lots of physiotherapies and other treatments, tons of precautions. 

I am fragile and when I break I cannot heal (2 broken arms 22 months after the breaks) so I am terrified of falling. 

But life goes on and I work full time plus I have 2 other jobs including one in Brugges (cobblestones galore!)...

Nothing stops the pain but some things help...chiropractors, massages (not too deep on the abdominal tissues or they break right through the abdominal wall!).

It may not be your case but it sure sounds like it. The diagnosis, as I have said, will not bring a cure but might help you to understand things. Please look it up if you have the time...sometimes just knowing and understanding what is going on gives you peace.

Hope that I didn't upset you

Sharon

Thanks for the suggestion. I will read up on that today. I think back when I had my colon out and the surgeries that followed, my healing issues were because I had been on very high doses of steroids for a long period of time. That directly effected my ability to heal. I had major back surgery a few years back with what my husband jokingly calls, carriage bolts because they are huge. I lost the feeling in my legs so I went to a spine doctor and it turned out that I had Pars syndrome. That is when the lowest vertebrae in the spine dose not fuse int he womb. So it was in two pieces and as I got older my muscles weren’t holding it apart anymore so it was collapsing onto the nerves that go to the legs. If I didn’t have it fixed I eventually wouldn’t have been able to walk. So I now have huge screws holding it apart. It healed up good. I did get five embolisms in my lungs and had to take injections in my abdomen for several months. One night I felt like I was having a heart attack. I told my husband it is probably nothing and by the morning it’ll feel better. He insisted on taking me to emergency clinic and the doctor was smart enough to do a ct scan since I just had surgery. He said I very likely would have died in my sleep had my husband not brought me there. He called an ambulance to take me to the hospital. The back surgery was the second operation in a matter of a few weeks as I had had a spinal laminectomy to have nerves cut in an attempt to block the pain I have. Unfortunately the wrong nerve was cut which has left me with a numb yet painful right leg and foot. It just keeps getting worse as time passes. My back hurts at times from the surgery on it but with the rectal pain so horrible I hardly notice.

Thank you for sharing your condition with me. While I hate your in pain, knowing others are going through even worse things than me and carrying on, is comforting some how. It’s not that I’m glad others have pain it’s more that they are dealing with it that is encouraging.    

What is Brugges? What kind of work do you do? Do you have a hobby or any pets?

I have a Rat Terrier that is a year old. My last one died at fourteen. It broke my heart. I still cry for him. He was the first dog I ever had. My cousins got him for me when my mother died to cheer me up. Besides my children I loved that little dog more than anything. The picture with the black background is my first little dog. The picture with close up of my dog is my new dog. He is very funny and makes us laugh all the time. I sent picture of the huge screws in my back. It’s actually comical.

I hope you have a good week end.

I read about Ehlers-Danlos. That sounds so scary. There are so many things that can go wrong.

The only two things I’ve had that defied explanation has been when all the fingers on one hand froze in an open position. They were like sticks. After months of physical therapy and a hand brace that tightened the pull on the fingers every few days the motion returned. There is a condition where the fingers close and won’t open but not the other way around like I had. Then A few years ago I lost the feeling on the left side of my face. It turned out that I had a bone eating cyst in my jaw bone. A biopsy was done but got different results one being langerhans cell histiocytosis. Another cyst appeared a couple a months later and again removed. The lab results contradicted the first finding and so far it hasn’t happened again.

I also have interstitial cystitis in my bladder that flares up from time to time. I get blood in my urine and it mimics a full blown bladder infection with pain and burning only worse. Sometimes it’s only a couple of days and other times it lasts for weeks. Sometimes like right now there is just mild burning that is relieved by urinating. Fortunately I’ll have periods sometimes lasting for several months where it doesn’t bother me as long as I’m careful about what I eat and drink. No acidic fruit juices or colas or coffee and no chocolate.

My parents told me I had bad seizures as a baby until I was about three. It was not epilepsy but they never knew why it happened. Oddly enough my first child did the same thing and there was never a cause found for him either. Other than a spastic colon he hasn’t had the problems I’ve had.

I say I’m just a lemon. I came defective from the factory.

The weird part of it is I have perfect blood pressure, blood sugar and all the other things they check for in blood work except a slight hypothyroid. So on paper I should be in perfect health. Go figure.

You hang in there, stay strong, stay happy.

Brugges. I looked that up too. A place that has cobblestone streets. Have you been there?

Funny how we have so many overlap symptoms. 

Not the nerves but the seizures and constant cysts... they are both mostly under control with seizure meds and constant cystectomies. 

The EDS causes a lot of musculoskeletal pain but good chiropractors help a lot...so does exercise in the water. I do 2 months intensive work on it every summer. 

Brugge is where I teach in November.  This is my 3rd yr there teaching marketing there. I give a conference on Happiness in Courtrai Belgium the same week...love the traveling and teaching. It is very cold there and it makes my catheter freeze and intubating more difficult but it is worth it. 

Did it 2yrs in a row with 2 broken arms!

We might be I'll but life goes on.

Congratulations on the new puppy...puppy love goes a long way to heal us.

You might want to look up VATERS as well...seems like you childhood seizures and colon problems are hereditary. 

Lovely pictures 

Keep smiling 

Sharon 

That sounds wonderful. What a neat thing to do. It must be just beautiful there. 

Before this pain there wasn’t much I let my surgeries interfere with. But the pain changed all that. Sometimes I wish I were paralyzed from the waist down so I wouldn’t be in so much pain. At least then I could be active again. Pain is like no other handicap. It is like being in prison with no release date and no one knows your there. It is a lonely place to be. I can’t leave and I’m not up for visitors. 

Your amazing the way you carry on with your life despite so much difficulty and suffering. 

I read the best saying yesterday. It was, Life isn’t about waiting for the storm to pass. It is about learning to dance in the rain.