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Hello everyone I had my ileostomy reversed about 4 months ago and I was so delighted to be getting that bag off!! To give a little history on my issues I never had Crohns or IBS all my problems started with a cyst that was attached at my tailbone but was so huge somehow it was looking like an ovarian cysts to my obgyn..I was pregnant when it was found!! Anyway after having my baby girl I was sent to an obgyn oncology specialist because they believed it to be cancerous. After my visit with them I was scheduled for surgery to remove the cyst. Once inside they realized the cyst was attached to my tailbone and rectal area. It was removed and after waking up in was in extreme pain. I was put on very strong IV pain meds and nausea meds. After 24 hours I began running fever and the pain wasn't even being controlled with the IV meds so they began to run all sorts of test to see why I had fever. They found nothing so about a week later I was discharged home with pain meds and told to rotate Tylenol and ibuprofen for my fever if it persist. Before leaving I told the nurse to page my doctor to let her know I didn't feel comfortable going home I was still in excruciating pain and felt horrible but my nurse said my doctor assured her that my recovery from the surgery was just going to take a little longer than expected and tother keep taking pain meds every 4 to 6 hours even if not needed to keep up with pain control! I went home and didn't eat, drink, or mover from my bed for 4 days I couldn't keep anything down my fever was continously I called my doctor and she said she thought I was fine but was welcome to go back ton the ER! I went back after checking my vitals with a very high heart rate and fever I was rushed to the back a Catscan was done to find it had a perforated bowel. They had knocked my bowels during the removal of my cyst..so that's how I ended up with the ostomy. I kept getting abcesses that eventually lead to a  fistula that for a year wouldn't heal so a proclectomy was done and j pouch formed...now for my question!! Since my reversal my new plumbing has been bittersweet and challenging..at first it was just urgency no diarrhea just had to go all the time then came the butt burn now I'm literally having full bowel movements on myself with no knowledge or feeling that I need to go..it varies from alot to just leaks but it's always something coming out..I wear pads and put something between my butt crack at all times and whenever I go to the bathroom there is always poop when i wipe!! This is so frustrating I never feel like I'm emptying my pouch and I have terrible spasms that make me stop whatever I'm doing and just squeeze my butt muscles together until it subsides..I don't have pouchitis but my Colorectal surgeon says I have a narrowing or stricture and he will have to do dialations under sedation every now and then until things get adjusted..please tell me things get better or is this going to be life for me!!???

Tags: pain, Colorectal, bowel, Pooping

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Britbrat, 

I am so, so sorry. I know what it is like to feel 'unclean' and not in control of your bowels.

You might want to have your pelvic floor checked out. You had a pregnancy, delivery and then repeat abdominal surgery all in a very short period of time...you have developed pelvic floor dysfunction that reduces your ability to tighten those muscles and keep control. There are exercises that you can do (you can find them on various Youtube channels or talk to a physiotherapist or doctor)

If you cannot put a bidet into your home, you may wish to get yourself a handheld shower fixture to wash yourself up each time...that helps with the butt burn. Makes you feel fresher too.

There is a learning curve to pouches and it may take you some time to get your plumbing to cooperate.

Check out various thickening foods (oatmeal? peanut butter and bagels, rice...) that may make things easier to hold things in until you wish to let them out. 

Good luck 

Sharon

 

 

 

skn69

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