Hi Everyone, Here is the latest...I wish it was better news, but here's to light at the end of the tunnel! Lizzie is on her way to the ER with out-of-control pain and nausea. She is doing her best...
Hi Everyone! Judy, what a fighter you are! I am so sorry for all that you have gone through recently. You already sound like you are making huge strides with physical and occupational therapy, and I...
Hi Everyone! Leslie, that is so scary...hoping and praying they find what is causing your seizures! Here's the update on Lizzie...My flight back home was on Monday :( Instead of discharging her when...
Hi Everyone, I have lots of catching up to do on here, but wanted to check in and give you all the update on Lizzie. Last Thursday was her consult with the adhesion specialist in Cincinnati. The...
Sarah, I have not brought up SMA. I don't see how it could be that since she did ok for awhile after the feeding tube was removed. If the feeding tube was holding a portion of her small bowel open,...
Hi Everyone, Please excuse any glaring spelling/grammar issues...first attempt posting from my phone. I am asking you all for extra prayers for Lizzie. She is not doing well at all. The vomiting...
Hi Everyone, I need all the fresh eyes and opinions possible on this one for Lizzie. To recap, she has had seven major abdominal surgeries; primary diagnosis was colonic inertia, then rectal...
Hi Everyone, I usually post in the ostomy group, but I need some fresh eyes and all the opinions possible on this one. My best friend has had seven major abdominal surgeries; primary diagnosis was...
Hi Everyone! So sorry it has been awhile since I have been on. I went and took 6 classes (definitely a "what was I thinking?!" moment), most of them sciences, so that took every last bit of time I...
My best friend has been having bladder/kidney issues. She has had 7 major abdominal surgeries due to colonic inertia and rectal inertia (total colectomy, loop ileostomy, reversal, K-pouch and...
Hi everyone! Rosemary, hope you're over that bug! Marisa, unfortunately there aren't any meds left for me to try for the gastroparesis. I am horribly allergic to Reglan...found that out the hard way...
Hi Everyone! Boat, way to go! I am so glad to hear things are going so well. It took me a good 4-5 days to even be coherent, and my bowel didn't even hint at moving until day 8 or 9. I'm impressed...
Boat, with your test results, it sounds like you're good to go! Sorry for the delay in reply...it was one busy week of midterms. Now that it's over, I hope to get to bed before 5AM! To answer your...
Hi All! Marisa, I am so glad to hear the Domperidone is working for you! This is such great news, as Reglan truly is a dangerous drug. Lizzie and I both had the same reaction to it- tardive...
Haha! Rosemary, Boat...you two make me laugh! Surgery on St. Patty's day and tipsy docs...too funny! Boat, congrats on having a surgery date. I think you will do really well- you're young, you will...
Boat, you do have a couple questions for your surgeon, but your defecography was normal, you pushed the balloon out, etc. I haven't seen much that would indicate you have a rectal or pelvic floor...
I think four is about the average. That's what my surgeon said, and that's what I saw published too. Because you don't have any rectal/pelvic floor problems, I think you will do really well! A...
Hi Everyone, Just quickly checking in... Boat, sounds like things are progressing for you to have your surgery! Great news! Just to toss more numbers into the mix, immediately post-op I started out...
Keep the prayers going for Lizzie! Placing the tube went well, but she is still having a lot of pain. They are transitioning her from 24/7 feeds to just running the feeds at night (higher volume...
Hey Gang, Lizzie's G-J tube placement went off without a hitch! Interventional radiology was able to place it Friday morning...no open surgery required :) They have feeds going through it now, and so...
Here's the update on Lizzie: She was admitted to the hospital in Michigan on Monday night. She was in so much pain that she could barely stand and could honestly not take it anymore. Last week she...
Boat, I'm not 100% sure, but I think it depends on your insurance. I think HMOs require a referral, but with PPOs you can go see whoever you want. That's how it is with me...I'm on my dad's PPO, so I...
Willow, 20 years of suffering...life is too short, my dear! I had surgery when I was 21. It should have been done when I was 18, but being so young, everyone is scared to death to do that kind of...
Hi boat, I am not starving myself, although I know it looks that way from what I am able to eat. I literally cannot eat any more than I am. We're talking physically unable to do it. Even the amounts...
Lots of prayers for sweet Lizzie, please!!! She was admitted late last night- throwing up and then dry heaving the pain was so bad. Thankfully, social work is going to make sure that she gets all the...
My surgeon was very willing to perform a total colectomy on me. By the time I had a consult with him, I had seen countless gastroenterologists (many of whom threw up their hands and didn't know what...
Hi Everyone, My goodness you all move fast...couple days of not logging in and I'm pages behind in reading on here! I have been buried with school, so that's why there was a delay. Mr. Boat, welcome!...
Jen, with your gastroparesis (I also have a GP diagnosis), has anyone ever tried or mentioned Domperidone? It's a gastroparesis med that has not been approved by the FDA, but it is used frequently...
Just got back from the appointment with my surgeon...I feel like it went well and that I got some good information and questions answered. On my concerns with the complications with a loop ileo, he...
Sarah, hopefully one of these days we will both get to cross Russia off our "to-do" list! Hodaya, Rosemary, and Sarah, thanks for bring up the possible nerve damage issue when the rectum is removed....
Hi Ladies, I need to go back and do some catch-up reading, but I just wanted to give you the update on Lizzie before hitting the sack tonight. So sorry for the delay...I have more classes starting...
I hope it can help get everyone in the same spot again! Rosemary, I read somewhere that there's a possibility of a future cruise to Russia. If that happens, and I hope it does, I will need to see...
Hi All! Since our old TC room/thread seems to have gotten buried over the holidays, maybe we all start fresh here with the new year. I know we all scattered a bit...hopefully this will fix that. Keep...
Rosemary, Thank you so much for your sweet post! Lizzie and I did not know each other prior to communicating on this site, facebook, and by phone. That friendship is such a gift, and I truly believe...
Rosemary, I will ask her about it and see if I can find anything on this type of MRI on Cleveland's website. Because I don't check in on HW everyday, feel free to email me at:...
Hi Everyone, It has been awhile...sorry about that. Between Christmas, doctors, school, and general running around, it has been busy. I was able to go visit Lizzie, which was so wonderful. I was in...
Hi everyone, I need ALL the input I can get! I am 24 years old and I was diagnosed with a "global" motility disorder (stomach, small bowel, colon, and rectum are all affected) six years ago at Mayo...
Hi All, Lizzie was discharged from Cleveland on Wednesday. After she and her mom made the drive home, she quickly spiked a high fever. They called Cleveland, and they said she needed to go to the...
Hi Everyone, The past couple days have been rough for Lizzie. They did finally get her pain under control, but she then had the signs of an overdose of pain meds (fever, vomiting, depressed...
Hi everyone, Lizzie's surgery went well. It was a pretty long and difficult one, though. Her surgeon found a lot of adhesions, lots of scar tissue. He is not 100% sure, but he thinks that the scar...
Hi Everyone, Lizzie has been scheduled for surgery Monday morning at 10:00 AM in Cleveland. Please pray for a flawless surgery and smooth recovery that is free from ANY complication. Pray also for...
Hi Everyone, Just wanted to give you all the update on Lizzie. She is having surgery this coming Monday, November 29. Dr. Stocchi will move her stoma to the left side to stop the constant leaking she...
Hi everyone, Hope you all are enjoying the weekend! Here is the update on Lizzie...just to recap a little, she was admitted to Cleveland one week ago with horrible pain, distention, and no output....
Hi Everyone, Wanted to give you all an update on Lizzie...She has been having trouble with obstructions lately. They have been increasing in frequency and severity. She was admitted to Cleveland...
Sarah, I am so sorry that you are feeling so horrible. Have you had an abdominal CT with contrast (both oral and IV) to take a look at your liver and the vessels? Or a HIDA scan? Have they ever done...
Andrew - Normal small bowel transit time is great news! So glad to hear that. My entire colon was long, "torturous and redundant," as the path report read. Mayo Clinic found my pelvic floor and...
Hi Everyone, Please keep praying for Lizzie. Her surgery is coming up very soon- Wednesday, November 17th. She has been very sick with the flu and a stomach bug, and even though she feels like the...
Sarah, this latest development and false diagnosis break my heart. Is there any way that you could return to Italy to see the specialist there again? Or does the good neuro-urologist know of anyone...
From what my doctors have said, the majority of the population has low vitamin D. This is due to the shift from a culture of farming and being outside all the time to working desk jobs and being...
Busy place around here! I am so sorry to read of everyone's struggles...I would love to reply to everyone, but I know that post would go on for days. Sarah, many prayers, and thank you for posting...