I am 42, I have (had) Crohn's disease, I have had three surgeries, one emergency surgery after a perforation because of a colonoscopy. Lived with a loop ileo for 2 years. Gave me my life back. Had a...
Oh you brought me right back to the first few weeks after both my surgeries! I said to my husband, "I am never going to be able to leave the house again!" She was so noisy! I went from a loop to a...
I sure will. She has a Facebook page you can follow if you like. Gianna-Lynn, age 8, needs a liver transplant. I am not on HW very often anymore......way too much drama but I will let you know...
This little sweetie lives in the same small community outside of Ottawa that I do. She attends brownies with our neighbor. The damage is indeed from Crohn's disease. Our community is doing everything...
Cupcakespinkgal, I am not on here very often anymore but am happy to help you. You can email me anytime (in profile) My story is long......emergency surgery after perforation from a scope, temp loop...
Blue, flip me an email at the address listed. Not on here often anymore but would like your advice on the wound. K...
Well, Polish Dan knows my feelings on the CBT or Friars as I call it. It's the only thing I use and have ever used since Dan was kind enough to help me out. I am surprised by NCOT's comments...
Hi everyone! Haven't been around much....been busy living life, working and getting ready for the holidays! Hubby and I have started some woodworking using pallets and making wine racks and signs...
Everyone is a little different but yes, I can eat all of those things you mention - not sure what a slim Jim is tho? If I eat nuts I chew them until they are paste! Salad causes me to have very...
Ugh, the packing was awful. My home are nurses were pretty good but it totally grossed me out. I would lay on my bed and either hold my breath or do deep breathing. I never wanted to look at it. My...
Last September when I had my stoma moved to the other side, it took a long time to close all the way.....like 4 months. Now it's healed but sometimes it twitches or something and I can feel it and...
The only time I have ever had a leak is with the Mio. I use the Sensura line and love it....
I am wondering if the Bezoine Tincture compound would help too??? It's sticky, and will help the skin heal but it will burn like a b$tch when you apply it to your sore skin. But it will work. It may...
Ahhh, blueglass, I needed to hear that from you. You are such an inspiration. Thank you. This is the first time in this journey where I have felt lost, discouraged and completely sad. I can't seem to...
I have never been sewn up....just left open to close with daily packing of Silvercel and promogram....
Still waiting on a surgery date. They are going to open it up again and then do the vac. All the nurses seem to think that the vac will help. I dunno. I think I am slightly depressed and scared about...
Oh Bania, been there done that......and the only times it has happened to me was when I was using the Mio, in fact my only leaks in three years were with the Mio. I don't think that adhesive likes...
I had one with my loop but not my permanent ileo....
RansiPlick, I surely hope that you aren't serious.....stay home??? Are you for real? Why in heavens name would we stay home and not go to a gym, pool, track, restaurant just because we have an...
I sooooo know what you mean. My first sto a was a loop and I had what my Dr and Surgeon described as a fistula or tunnel where my stoma met my skin. I had output that would come out of there and...
Thanks Equestrian Mom! I appreciate your insight and advice. Yes, I have read that pain meds are a must.....will be insisting on it. Will keep you posted....
Cpc56, please don't stress yourself! You will be fun and have zero problems. Just follow the suggestions and everything will be fine! You will wonder why you were so worried! Have a great trip!...
That's what the surgeon said too....she said, "You had Crohn's in that area for 21 years....it's not going to be gone overnight!" Touché! Lesson learned. Recovery is a long, slow, patience testing...
I have flown across the Atlantic twice, to Cuba, the Dominican and across Canada. No issues ever. In fact I have even stopped telling the airport security about my ostomy because 1. They have no idea...
Surgeon thinks two glorious weeks (😁😁😁). This will be the third attempt to get this thing closed. I will be asking for pain meds to take before they do the changes....... Guess I won't have to...
So this darn butt wound is being stubborn and tunnelling. So surgeon is going to go in and clean it all out and then use a wound vac. So, tell me about your experiences....I want the good, the bad...
Congrats!!!! I had to take four tests before I got a positive too! Stay well!!!...
Pat, most pouches come in different sizes. Coloplast has the "midi" and the "maxi". Call them and ask for a larger pouch size. They are always happy to oblige. I wear the midi....the maxi is way too...
Yep, if he doesn't want you with your ostomy bag, he's not worth it. I was already married when I had my emergency surgery and it's been a long three years for both of us. With my revisions surgery...
Part of my wound opened up too......it wasn't fun and I was devastated. But it does heal. Make sure you are eating a ton of protein....I know it's hard to think about eating when you are leaking...
Congrats on your decision! It will make a huge difference for you! October 14 is only a month away! It will go quickly' I empty my ostomy pouch (no j-pouch for me) every time I pee. I prefer to have...
Brent, email me (my email is in my profile). Perhaps we can set up a FaceTime or Skype chat. I am happy to walk you thru whatever you need. Kelly...
Here is a thread where his routine is quoted! http://www.healingwell.com/community/default.aspx?f=33&m=3018829...
Hi Tom, In case Dan doesn't pop in today, I know all he (and I) uses is the Compound Benzion Tincture under his wafer. He was very good to me and emailed me several times when I was starting to use...
I have never used a convex so not sure what they look like. You are entering the "try it and see if it works for you" stage!!! Request all kinds of samples, try them out, see how they feel, how your...
6-7 days in between changes for me unless like Polish Dan, we are heading out somewhere for a few days then I will do a change before we go. I haven't had a leak in many months so I don't wait for a...
I don't use any of the ostomy powders or barriers....I only use Compound Benzoin Tincture (Friars) under my wafer and around my stoma. My skin is always healthy and no irritations. I remove my wafer...
I will still see my GI every 9 months to a year....more at my insistence than his but perhaps after a few years I will feel I don't need those appts. My fear is, however, if I let him go, I will...
Good luck!!!! Say goodbye to being sick and hello to your new life!!! A piece of advice that someone gave me before my surgery....don't measure your progress each day but rather evaluate how far you...
Answers, is your Friars sticky when you put it on your finger? Does it only wipe off with alcohol? If so then that's the right stuff....
Nope, no powder.....just the tincture and your wafer. Hope it gets better soon for you!...
Keep using the tincture around the stroma too. I apply it everywhere under my flange with two swipes around the stoma itself. I never have any problems! Hope it continues to get better for you!!...
13 weeks after my first emergency surgery, we went to Frankfurt for five days and then Paris for a week. We walked, and walked, and walked. I never felt so good in my life. Then in February (3 months...
The wound was constantly draining and not closing at all. Sorry, sleepy today. Will try and write later. K...
Silent, I don't know much about j-pouches but wanted to send you some healing thoughts and best hopes for some answers soon. Keep on pressing for answers. K...
Home from the hospital......the aenestiologist (sp) couldn't find a vein for love or money...the finally gassed me out and then found a vein. So, the wound...... There was a sinus on each side of the...
The only reason I have gained weight is because I have enjoyed the sheer joy of being able to eat without doubling over in pain and running to the bathroom. Now that I have splurged and enjoyed...
Woot woot!!! Awesome!!!! So happy you are getting out and enjoying life!...
AnnaIvy is right......the stoma nurses only know what they are shown......the last one I had, I taught her more than she taught me....... What works for one may not work for another so don't be...
Blue, loved your article!!!! Thank you for that. It's even the small things that we need to think about. I will likely be up and walking more than I imagine right now as I have a hard time staying...