Colostomy and Bowel Intussusception Diagnosis

I will try to keep this short and lite. If the women with an colostomy want to skip to the end, please do. Since I was 12 yrs old I have had bowel issues (that was mid 80s). Medicine has changed so no diagnosis then, they just told you are too thin.

Years of symptoms with a misdiagnosis

In my mid-twenties and in college I had lots of issues and weight loss. Still no diagnosis. I continued to ask and go to doctor after doctor. Jump ahead, I ended up in the hospital at age 27ish after a bout of not being able to keep food down or in on both ends.. y'all know. Finally a diagnosis of Crohn's / Colitis. I stayed on everything from pills to shots to infusions with a horrible anaphylaxis reaction to an infusion for years. Then more tests, would go into slight remission then not, 45 min in the restroom. Should have invested in toilet paper stock... LOL.

Years of the bathroom issues, stomach pain, every single med, doctor upon doctor, colonoscopy, endoscopy, and other odd test, balloons (no comment where), x-ray watching me go. Still stayed on the meds.

20 plus yrs later here we are misdiagnosed. THIS IS not everyones story by any means! 2 weeks and 3 trips to the ER, the doctor admitted me for a 7 day stay, a myriad of tests. Still no idea what was going on. As some have experienced, multiple doctors come in, you are drugged with pain killers that do nothing for the pain but leave you foggy and not remembering anything. Thankfully my husband and parents were there. After day 4 my husband compared me to a cow with a twisted stomach yes.. good old farm mentality. The doctor thought he was kinda crazy but it made some sense to him. My husband reads a lot about my condition.

Rare and unusual intussusception diagnosis

The doctors stepped out, consultant came back and decided to do a colonoscopy and endoscopy. Next the doctors came in with the results and said I had bowel intussusception which is rare and unusual for someone in their late 40s, "we don't think it is Crohn's or Colitis." They weighed heavy on the rare and unusual, this is usually found in infants and outgrown. I just looked at my husband and said take it all out, make the pain go away. The docs said they would need to consult nationwide/possibly worldwide as to ensure the best outcome for me. I just repeated ok - I am at peace if you need to take it all out. Just a side note I guess they are working on an article about my case now.

Doctors decided first approach was an ostomy on the right without a barbie butt. To see how I do and if this resolves anything for a couple weeks. Ok, surgery ensued. I recovered, weeks went by. But something just didn't seem right, I still had pain - trust yourself, your body. Push for your health, advocate or have someone you trust advocate for you!!! I cannot say that enough.

I returned for my follow up and more tests, the above ballon, and watch me poop x-ray test (oh joy). No more modesty left at this point may as well streak naked down the street lol.

The test results were not good. Next steps were reviewed with a room full of my people. Yes even as an adult my support team goes with me to my appointments. It is a major decision. A permanent Colostomy was decided left side, where would you like it placed, etc. How will this change your life etc.

Pain free after surgery

I went in for the surgery right before then as COVID hit. I came back to the room and for the first time in over 20 plus years I actually had no pain. I cried in relief, not pain. Even the surgery pain was less than the pain I was in pre-surgery. It was utterly amazing. There were adjustments I had to go through but I have my husband a tell-it like is guy by my side. He changed my bag when needed, my mom stayed with me when I had to shower with help. Like I said modesty was gone.

I did have a paralyzed bowel a week after surgery.

The thing the surgeons didn't talk about is women having pelvic floor muscle issues due to rectal surgery and what affect it has on them!!! Kegel exercises will not help you. You will need to go to a special kind of physical therapist that you feel comfortable with. This will affect you with your partner. This may cause discharge that may alarm you. I am 3 years out from my last surgery and just now am figuring this out for goodness sake and still having issues.

I have gone to PT for the muscular issues but the discharge will not resolve. I want women to know they are not alone!! I want doctors to inform their patients and possibly consider having a specialists of some sort in the surgery consult if possible - yes this will create a larger cost. We women need to know. I just found a Dutch article regarding rectal surges and that is about this. I will not preach I am not upset just want to inform.

I live a great life now free of pain, with the correct diagnosis, medicine changes with time. I was lucky to find the doctors I did. I thank them all. I enjoy riding, working with my horses - I am able to work and travel the US. I still have a limited diet but I can eat things in limitation that I couldn't before - hate a "food hangover".

Thank you if you chose to read this. Reach out if you'd like