I have had a proctocolectomy 11 months ago. I am 62. I lost my colon.............6 years of UC brought on by chemo for a blood cancer. I tried several biologics. In the UK, surgery is still preferred...
Make sure you have a WOCN (nurse that specializes in ostomey care) at your beck and call when you come home from the hospital. She/he will be a invaluable resource. Purchase a waffle cushion on line...
I use Eakin seals; have never had a leak when using them. I also use Coloplast Brava adhesive remover (spray can). When I remove my appliance I wipe the stoma area with a Viva paper towel, spray and...
Last ditch option to surgery.............have you tried Entyvio? New hot UC drug. Did not work for me, but seems to be helping other UCers. Facebook has a great closed group called Entyvio Warriors;...
SuperBlanks, I have been following your posts on this site for the past few months; you are wise beyond your years. I am coming to the same conclusion that you suggested. The whole issue could be...
Superblanks, my grandparents are from Cork; maybe it is in the genes; but I think you nailed it. I just overdid it. It takes me very little to get full since I returned from my grand adventure. I am...
I agree with you that a stomach bug does not usually last two weeks, but let just hope the docs are right. I was going gangbusters until two weeks ago. On the other hand, my GI track is still trying...
I am 3 months out from a proctocolectomy. It has been essentially uneventful until the last two weeks. I took a one week vacation to NYC, flying in from San Francisco. The night before I left I...
I decided to have proctocolectomy surgery when after 5 years of pancolitis, I started failing the available drug therapies. I was on Entyvio for 5 months; this drug takes a long time to kick in; but...
I am 10 weeks post protocolectomy. Walk, walk, walk and walk some more. I am doing 10,000 steps daily (kept track of by my I phone). In the last couple of weeks, I have found no need to nap on the...
Consider buying a waffle cushion; protects the anus wound when sitting or driving. I also packed my wound with a small amount of gauze (2inch by 2inch) for six weeks, changing the gauze about every 8...
Why can a person not rent a car until age 25? The brain is very slow to develop; and pediatric neurology holds on its patients a little longer than other pediatric disciplines. Pediatric migraines...
Thanks Susie. The issue I am trying to explore I whether TOS and NDPH are related in my son's case. Causation possibly? E's docs have opind that that NDPH is an overreaction by the brain to the TOS...
My 21 year old son, E has NDPH. When he was 18 years old, E developed Thoracic Outlet Syndrome; not a candidate for surgery; in March 2014, we finally found the right TOS doctor and E was able to...
You will do fine. Just think, you do not have to worry ever again about colon cancer. I have had two blood cancers. No fun. The bag is kind of a "trip." I am not one bit turned off by my new...
I am nine weeks out. First, make sure you have a very experienced surgeon. I really did not have any significant butt pain; I attribute this to a very skillful doctor. A waffle cushion is a must for...
Do you folks all use two piece appliances? I am still pretty new, but am using Coloplast one pieces with Eakins barrier, and for hygiene purposes I am changing every three days (neurotic). I shower...
As for air, just burp more often. U can sneak off and do that anywhere. Filters stop working in about 24 hours; so do not depend on them. Regarding the uniform issue, I am a lawyer by trade. If you...
I love organic cornflakes with blueberries/stawberries and almond milk. Have not problems and very satisfying. I find oatmeal unapetizing and am frankly sick of rice based anything. Lived on rice...
I had a protocolectomy in June. I was very lucky to have an extremely experienced and skilled surgeon who is also a professor at our local university hospital. She performed the entire procedure...
I find gym clothes to be a great fashion solution . Are you female? Tops from Athleta with runching or tops with slightly flared hems do a great job of hiding my bag combined with Ostomy Secrets...
Six months is a good amount of time to recover. I had laproscopic surgery with an additional bikini incision 8 weeks ago. I am 61 years old; no spring chicken; but prior to surgery I walked and hiked...
I am now almost 8 weeks out. In the first weeks, I felt pressure when my stoma was active; not painful but very sensitive; I am sure that was due to swelling and the surgical site being so new. It...
I am 5'6 and weighed 114 after surgery. I am 8 weeks out and now weigh 122 morning weight. My goal is 126-130. I have indulged in plenty of ice cream and cheese and salty carbs; let's just say I have...
My ostomy nurse recommended a waffle cushion from http://www.ehob.com/. It worked perfectly; do not buy from Amazon; only purchase from the website as the product comes preinflated; Amazon has had...
Superblanks, am going to NYC for a week 3 mos post op (end ileo); of course to celebrate. Will be traveling cross country from SF, CA. Any tips on air travel? How did your bag react in flight...
Three weeks after surgery, my docs instructed me to take Benefiber up to 3 times daily. Add two tsps to 8 ounces of OJ each morning. Seems to do the trick. I am now 7 weeks out. I find cooked...
Yesterday, I tried using the Brava Barrier Strip as an alternative to belt (caused itching). I am 5'6 but am narrow hipped with a short waist. I found by adding 3/4 of a curved strip to the top of...
Susans53, funny you should ask. Went for a 2 mile walk Sunday mid morning; came home; had lunch and then took a 20 minute snooze. Seems to be the pattern. I am back to my daily routine (client work,...
I am also still pretty new to this game; 7 weeks post ileo surgery for UC. I was frequently rinsing out my one piece Coloplast convex drainable prior to my last bag change; created a leak; even with...
Amazing stories. I had surgery with a permanent ileo 6 weeks ago. I agree that we are never the same after these replumbing events. That said my ileo is "The Little Train that Could". It has adapted...
I do not think one can generalize how immunosuppressants affect patients; there is an individual response factor akin to chemo. Also, drugs differ on how and to what degree they suppress. In other...
NYD (Not My Daugher's Jeans) which is very popular in the States is now offering a skinny jean without a wasteband/zipper. Some folks I know wear maternity jeans; can't quite go there after having...
You might try University of California San Francisco. I had an illeostomy procedure 5 weeks ago perfomed by the chief of colorectal surgery, Mika Varma. Simply an amazing doctor. If she is any...
I had "Barbie Butt" surgery about a month ago. I developed UC on account of treatment for different blood cancers I was diagnosed with in 2000 and again in 2003. I can relate as my IBD was preceded...