I have to have chemo for 7 more treatmetns...once every 2 weeks. So by October I will be thru. I am trying different appliances, and hae found, so far, that i like the 2 piece the best, as you can "burp" it. How do I access my profile to tell a little about me? I don't know how to do that...or leave my email address so that people can email me? I have malabsorption, so diarrhea is a biggy for me. I take tincture of opium, get sandostatin shots once a month, and take panocaps with each meal. But it doesn't seem to be working most of the time. :o( My biggest concern is my weight. which is really low. I need to gain about 15 pounds. I am trying everything short of TPN.
Hi BadBagGirl and Peggy!
It is so good to meet people that have the same problems! Bless you Both!!! I just had a birthday....June 21...I turned 62. I had OVARIAN CANCER when I was 29. I went thru 6 weeks of radiation treatment, followed by 18 months of chemotherapy. The radiation treatments did permanent damage to my whole digestive tract, burning and scarring my small and large intestine. Consequently I had chronic diarrhea, and as I got older it got worse; so much so that I had to quit my job....I mean...where can you work sitting on a toilet?! Well My gastorenterologist told me that I was a very good candidate for colon...4 years after my last colonoscopy, I had another colonoscopy and VOILA! Colon cancer...sigh. Well I am very fortunate because when I had Ovarian Cancer, the docs told me then that I would probably only live maybe 6 months! That was almost 33 years ago! Like you BadBagGirl, I am very small....I am trying so hard to gain weight! My one downfall is coffee....but I have cut way down on it....Immodium doesn't work for me. Lomotil used to, but even it doesn't anymore. So the only thing that sometimes works is Tincture of Opium which slows down the gut. I will try the foods you suggested THANK YOU! BLESS BOTH OF YOU LADIES!
Try switching to decaf, and I bet the immodium may help along with 1/2 banana before breakfast and the other 1/2 with or after breakfast. That helped when I decided to try to eliminate some of the immodium I was taking -- read about the caffeine trick somewhere and decided to try it. Whoah-La! It worked. Coffee kills the appetite too for me -- but I love my morning decaf latte --- at least I get my calcium!!!
Does the tincture of Opium work for you w/o making you groggy or goofy? Just curious...
Has the numbness worn off of your tooth yet? Does it hurt? Hope it feels better than it did before it was pulled.
Isn't it funny that some of the drugs that they give us to resolve D actually gives us D?!! Hmmmm... Flagyl is one that I've taken recently for a bacterial/viral thing in my intestine and it always kills my gut. All the memories of taking it when my CD was active came flooding back!! So, I have to take 1/2 a pill every 2 hrs with food each time rather than 1 pill every 4 hrs. But it works for me.
I make my own decaf lattes every morning, before I leave for work. Cheaper than Starbucks by a long shot.
So you have an illiostomy....And you work too! WOW! What kind of work do you do? Ummmmmm when the doc removed most of my colon, he removed a large portion of my small intestine too. It was severly damaged, paralyzed, scarred, burned....etc! Bad, in other words. So he took it out too. I suppose down the road I could maybe have this colostomy reversed? But why would I want too? I mean, now I do have some freedom and a life....where before I couldn't go anywhere and had to stay home near the bathroom. Besides my surgeon said that I now have "short gut" syndrome....so without the colostomy, I would have constant diarrhea.
This may sound crazy or forward, but it would be so cool if amybe a bunch of us could maybe meet? and maybe have lunch? That is presuming that we all live fairly close to one another. Hahaha...probably we are all over the United States or World! My doc told me that there are at least 1,000,000
people with ostomies in the United States. That is impressive!
My good ness you are amazing! Working, and having had this for 24 years! GOOD FOR YOU!!!
Shaz that posts on this forum has me beat as do a few others on here.
Yeh, I work only part time now but not due to the ileostomy in a clerical position. I am fortunate enough to be able to work my own schedule which is early mornings, like 7:00 - noonish, sometimes 1 or 2 p.m. I usually only work Mon thru Thur now then go out to the site where we are building our home. I just got done putting over 50 outlets in, 28 (7 sets of doubles) in our detached garage; plus the rest in our basement and living level. Today we installed our smoke detectors and part of the security system. Almost time to start laying some tile and wood floors. Never a free moment --- I did sleep in and be lazy earlier today and this evening.
If you still have some of your colon and rectum, maybe your dr. is thinking about possible reconnection down the road. It would be a hard decision if you are pain free and feeling well. Personally, I don't have that option. My ileo is permanent. But it would be a no-brainer decision for me since my CD constantly returned after some resections I had done prior to the removal of all of my colon.
Sure, I would vote for a get-together but I know most of our folks that are posting are from Austrailia, OH, FL, NY, NC, MN, etc. Kind of all over the place. I would love to get together and meet everyone.