Hi everyone! This is for this considering:
1- removal (excision) of their jpouch
2- Mayo Clinic
Friday October 20, 2017 my courageous, exhausted and very sick husband underwent a 13 hour surgical procedure to remove his jpouch of 20 years. His SECOND jpouch. The first one failed and with all the complications he had 7 surgeries in 13 months. The second one was created at University of Utah 20 years ago. He got a good 10 years out of it. The last 10 years have been full of pouchitis, frequency, straining, antibiotics, Pentasa and just overall hell. Misery at its worst. Diminished quality of life. We opted to go to Mayo Clinic. Dr. Amy Lightner was the surgeon. She diagnosed him with several strictures and fistulas that “webbed out”. It was a long complex surgery due to urinary stents, adhesions, strictures and fistulas. Once the diseased pouch came out (diseased because he developed Crohn’s of the jpouch), the small intestine present revealed it was ridden with “the worst Crohn’s she had ever seen.” She took out 13 cm of diseased small intestine.
Listen, this is one tough surgery. Especially if you are sick going into it. He was in the ICU until this afternoon. Elevated heart rate, low hemoglobins, fever. His major complaints now are gas, bloating, thirst. Nothing is quenching his thirst. And the gas keeps him up at night. Gas is painful! Mayo gives him melatonin to sleep. Gas-x and xantac to control the gas. Tylenol to control the pain with occasional oxy if need be. They seem very stingy prescribing him any significant hospital-grade meds, especially for gas and sleep. His pain is manageable but the gas, bloating, thirst and lack of sleep are killers! He could use some good hydration in the IV. He is on antibiotics in the IV but those aren’t helping his thirst or gas.
Dr. Amy Lightner went out of town for a conference right after his surgery. In fact, she missed her original flight and had to book a later one! She has called me twice and seemed genuinely concerned and said the nurse can page her any time. So the residents come see him in the morning. Which is ok, just would really prefer the surgeon who performed it see him. The nurse now just told me she will not page the consultants. Apparently Dr. Lightner is a consultant. As a patient, how are supposed to know that? The good news is the stoma looks great and is doing exactly what it should be doing! Hopefully this will allow my husband a much better quality of life! He truly is my hero!
UPDATE: Diagnosed with Crohn’s of the j-pouch and Crohn’s Disease. After 18 days at Mayo, he is finally home, with a wound- vac, a drain in his hip (hematoma), and the ileostomy. He had an NG tube placed to get rid of the bile the Ileus was causing. Ileus is VERY common after bowel surgery (I sure have learned a lot!). As rough as an NG tube is, if you don’t have one after abdominal surgery and have gas, bloating, nausea, and BILE filling your ostomy bag, get one! He vomited 1300cc of Bile in addition to filling up full catheters of bile. He also had another surgery before we left as he had a dehiscence- thus the wound vac. We have nothing but positives to say about Mayo Clinic. When a complication arose, they dealt with it- STAT! In fact, when the dehiscence was spotted by a great nurse, she said “I’ll be right back.” And she came back seconds later with three of the worlds top colorectal surgeons, including a Fellow from the UK. Amazing! The nurses are the backbone of Mayo for sure!
He is feeling better and healing at home. He’s eating every two hours. Good solid food that he wasn’t even able to eat when he had his diseased j-pouch. He is feeling better already- no more straining, butt-burn, diarrhea, pouchitis, cramping, 15 trips to the bathroom every night, sleepless nights. None of it! The ileostomy is becoming easier to change now that the wound is closing more. I still cut the flange alongside the wound and build a layer of putty to protect it. Its working great. Due to the Crohn’s, he is beginning Imuran and Remicade.
For those of you suffering with a j-pouch, there is HOPE!
