Seeking advice on severe cramps and frequent back passage movements

This is my 4th stoma and I didn't experience the pain and passing "stools" through the back passage. 8 to 15 times a day. I would like to know if anyone else has experienced this and if anything can be done about it. Thank you for your time.

Hey Kqueen, I'm, not sure I understand exactly what your situation is.  Please forgive me.  I would love to offer some assistance.

Sincerely,

Mike

I know exactly what you're experiencing. It has been awhile since it happened, but just the last 5 evenings I have. I'm disappointed about it. I had a surgical sensory stimulator installed into my sacral nerve. A probe is placed, and a pacemaker-like device controls the issue you're dealing with. It is natural for it to happen. In my case, it was too much. So I have what's called a medical S and S stimulator installed at Mayo, Rochester, Minnesota. I live on Long Island, New York. I'm the only one person they installed this for a bowel issue. It is used primarily for female urinary incontinence. However, I was willing to stop the embarrassing incontinence of loose mucus bowel movements to the real stuff in many cases. I'm with an ileostomy since June 2016, and it went from a reversal of 12 years to the accidental simple procedure my bowel was perforated. I should say it was not done during the stimulator installs, but a month later they attempted stitching two pigtail stents into my J-pouch, hence the surprise ileostomy. I had tons of issues with the reversal and dealt with other. I don't let the bag or stoma, who at times I get very angry with. So if the back end issues continue every day for months, I would consult with your dreams. Maybe what helped me would be an option for you. The stimulator corrects the leakage by you simply having control of levels and sensation to keep it in check. I just raised my level and strength. Also, watch what you eat the times it does happen. My latest issue is due in part, I believe, to carrot cake my daughter made for my birthday. No raisins, but she did put in some chopped nuts. Still, I took control of it with the stimulus device. Extra plus, sometimes it helps with sneezing issues and leakage. Good luck and let me know how it goes. ****

Oh, it's sacral nerve. It is placed in my left buttocks. I have an ileostomy on the right. A port on the right. To equal things out for my 59th birthday, I had the helix ear cartridge pierced in my ear. I'm really quite reserved, so as my daughter stood by in aghast, I had a little Cz. stud pierced on the right side as well. I figure you live once and tastefully done, I felt in control of something that brought much less pain than I have had thrust on me. Each birthday, I do something to push the envelope just a bit. My 47th birthday was a tiny tattoo where nobody can see it with "faith" above it and my daughter, an English Professor now, has the same but "hope" is written above hers. She too does something to mark our years. We went to war with a rare form of cancer. My son, he moved out of state and afraid of heights, he climbs the straightest, tallest mountain sides I ever did see. He also is into snowboarding. Everything we do is to push the envelope in gratitude for the lives God gave us. Take care!

Auto correct is not helping here. I also type faster and don't proofread, sorry. Doctors instead of dreams in the above message. I'm 5 ft and holding onto 99 pounds. Hydration via port brings my weight up to over 100 pounds. If anyone can help with food ideas for grazing all day, Dr. Orders. I have too much output, all water. They will start me on some opiate despite my resistance, but I have no choice mouth to pouch. Food, liquids, you name it and I'm emptying the pouch. I'm one quick leftover producer.

Oh, the cramps are normal too! Sorry. For anyone viewing this, it is embarrassing but if it helps one person, I'm happy to help. The cramping does hurt and the sensation to relieve oneself is not phantom. It's genuine. Let me put this out there. How does anyone handle the odor? You all know what I'm talking about. I find it extremely embarrassing. I have all sorts of potions. I found Hollister makes a spray offered to the hospitals but yet to find it.

Hopefully Kqueen and Nmbb, you guys are familiar with each other's situations and will benefit from your conversations.  I'm still curious but totally lost.

Respectfully,

Mike

Bad cramps 8 to 15 times per day. While I had a reversal after a total colostomy in 2004. I had a J-pouch. I worked but went to the bathroom because of cramps and going 140 times per day. While my then teen children had the same surgery were going max 4 times per day. It came 11.5 years later I stopped moving altogether. The large City Hospital here wanted to start chemotherapy again which wouldn't be the answer. They had no idea what happened. My then 27-year-old daughter researched hospitals, sent my records out to those that replied. She chose Mayo Hospital, Rochester, Minnesota. So, I went in less than a week. I was put on a plane and I couldn't walk by this point nor eat. April and May I had tests that the large city hospital that specializes in our illness doesn't have a policy to do testing. Treating rare forms of cancer and chemo. Yes and surgery they do but refused due to the high risk. So Mayo did tests while it was exhausting it was thorough. I found I had my small intestine in three loops that going 140 times a day was actually constipation. Some would squeeze through frequently. It caused the small intestinal loops to crush down and kink if you will causing an angulation on my small intestine. They placed two pigtail stents which opened the angulation. Now the body was incontinent and I thought life was over. The second and see time later was surgically placed after days of stents opening the strangulation hoping to control the incontinence I was now experiencing. So snowstorm stimulator placed in left buttocks and a probe into my sacral nerve and yeah the body was working. I came home with this knowledge... I had no pelvic floor working it had nothing to do with adhesions blockage, or what I did or didn't eat. My pelvic floor wasn't working. Through the extensive testing and care I received proved while humiliating my pelvic floor needed therapy. There it would take two weeks. At home it could take up to a year. During this decision time for the S.N.S. stimulator the piggyback stents placed in my pouch opening the angulation fell out while back on Long Island. So in June Mayo went in and placed a few stitches to hold the stents in. What they didn't realize and it only happens in 1 percent of people..... during the procedure which stitched the pigtail stents in place was done endoscopically. The issue was they didn't realize they were tearing just below my a stenosis. Short story, I nearly died as they accidentally perforated my bowel. So many drugs and 7 days later I awoke with an ileostomy and yes! My life! Which was not certain during the ordeal. Now leakage from the back end was normal. The stents stayed they do nothing they're shut into my stapled non-working J pouch it leaks from the back end it is mostly clearish mucus, normal. Now with the stimulator in place once I feel cramps it takes me a while to realize my hands controlled battery pack in my pocketbook batteries need changing and I change up the stimulator. The cramps subside, the back end stops leaking and I can wear white pants! I just need to remember the pelvic floor doesn't work without the machine. So while lengthy I hope this helps!

Oh gosh! My autocorrect and failure to proofread. It's no wonder you're confused. My apologies. I have to be clear, I am ileostomy, 2 non-working pigtail stents, a medical neurotransmitter, which works for the leakage and incontinence in usually the urinary issues, however they experimented with me and it worked. It has stopped the leakage you speak of.

Call Mayo and ask to speak to Shield Buehler of Dr. Dois. His name is pronounced "doze was." Sorry phonetically, that's it.

Ask about the Stimulator Dr. Chua placed in a patient with F.A.P. and Gardner's Syndrome. To help you. Then contact me back about the angel network to get you to Minnesota via airplane. Most procedures are done outpatient so a hotel is needed.

There is a hotel we used with a free personal shuttle at a call to the help desk. So much I learned.

YES, anything that can go wrong has been my life. It doesn't mean it's yours. I really believe you could be helped. I don't regret my decision. I felt empowered with my new body. I do have dark days and it's not the bag or port. It's lack of friends, disability retirement, my husband, and my loss with him. The cancer stuff I didn't know I had, my children inherited and fight it too. I have no friends nor family. I got sick and people feel while I'm cute, funny, witty, intelligent, creative, blah blah blah... I'm too complicated. Just turned 59 and I'm a young 59 so I'm not sure how I got to being too complicated. My mother thinks the bag is disgusting and repugnant. So, I gave up on perfection when shit hit the fan. I don't edit all I say. I'm just trying to get through a day alone. I thought the bag and port as an interruption, now I wonder why I'm trying so hard, for who? My daughter. My son will talk to us if I'm about to die, otherwise he stays in Nevada and travels the world (not here) with his wife. My daughter receives her doctorate in English Comp. And then into the hospital the next day for a bit of work. I live for her, always have.

She is an angel. Though married, I have taken a very back seat. I will not know grandchildren, so there goes that clan of friends. They feel uncomfortable for me. So take care of your assistance and it will be a dream come true.

I know this as factual.