Anyone out there with an ilioanal anastomosis or ostomy...

K

KTsMom

Member
Hi!
I am new to this forum, but have been using Cathe's dvd's for a while, thanks to my favorite sister. Is there any active person in this forum who either has an ilioanal anastomosis or ostomy and is able to lead an active and full life? I am recovering from a second surgery, and may in the future need to have an ostomy. I would love to talk to someone who is able to stay active and positive, and has gone through this successfully.
I am the Mom of an amazing 20 month old!
Thank you in advance!
KTsMom
 
I have had crohn's disease for 26 years and about three years ago underwent a left hemicolectomy. Unfortunately, my bowel perforated and a ileostomy was required temporarily. I am now in the best health of my adult life. I would be happy to try to answer any questions you might have.
 
RE: Anyone out there with an ilioanal anastomosis or os...

Wow! I can't believe anyone responded to this one! What is a hemicolectomy? Your ileostomy was reversed? Are you able to eat normally? Were you able to eat normally when you had the ileostomy? Was the tissue around it raw? Is the bag disposable? How did you empty it and how often? Were you able to exercise rigorously? Any leakage? Was it hard to conseal under your clothes?
I am currently not able to eat veggies, fruit, grains, seeds, nuts and when I do eat, I am in the bathroom 20 plus times a day and can't leave the house afterward. I have no energy, but force myself to workout several times per week, while my daughter takes a nap. Before all this happened, I was a workout-aholic!
Thank you so much for responding! Do you have a favorite Cathe dvd?
 
RE: Anyone out there with an ilioanal anastomosis or os...

I had a stricture in my colon, most likely scar tissue from years of disease. They took the left side of my colon out (left hemicolectomy). A temporary ileostomy was created in order to allow the bowel to heal and rest after the perforation. A third surgery allowed a reconnection so now my plumbing is "normal". The stoma (bowel connecting to outside of abdomen) should always be pink but not painful. If you have leakage, then the skin can get raw around the site. There are products that help prevent this. When the ostomy is created, they have a clinical nurse specialist who will come and teach and assist until you are comfortable. Since I am an RN myself, I just had to be "checked off". Emptying is required when the bag is full and depends on what and how much you eat. If you need to have this surgery done, noone but you will know unless you wear something tight fitting. In retrospect, I am very glad that I underwent this proceedure. I am so much healthier now, do not have to take any medications, and only have minimal pain. After years of restricting my diet, I am trying to reprogram myself by eating a wide variety of foods. I hope this helps. Please feel free to write again or write to me directly. I would be happy to help in any way I can. Also, there is a Crohn's and Colitis website- www.ccfa.org I think. The have an ask-the-doc forum that is very good. I don't have a favorite Cathe. I like them all, but I prefer cardio over weights.
 
RE: Anyone out there with an ilioanal anastomosis or os...

Hi,
I don't have an ostomy but I have had Crohn's diseases for 15 years, I have had 2 small bowel resections but my Crohn's does not affect my large intestines as yet. I am currently on medications because after the surgery my Crohn's came back. I exercise because it makes me feel good, and there are some things I have to watch when I eat. I just wanted to post to let you know if you need to talk or anything feel free to post.

Phyllis
 
RE: Anyone out there with an ilioanal anastomosis or os...

Thank you so much for responding! A fews years back, I became a Hydro-therapist and Massage Therapist. Some of my clients had Crohn's disease, and benefited greatly from colonics. Crohn's is very painful. Exercise does make us feel GREAT!!! Sometimes I am in too much pain, which then gets me down. :(
Do you have a favorite Cathe dvd? I am 4 weeks post-surgery, and have to wait another 2 weeks to do Cathe dvd's. It feels like a very long six weeks, especially with bathing suit weather upon us. I had purchased a Precor Elliptical machine a few months back and am able to do 10 minutes really slow.....woopie.... I know I should be grateful. It is better than nothing. If anyone living in the Boston area wants a great deal on a new Precor, let me know.
 
RE: Anyone out there with an ilioanal anastomosis or os...

I can sympathize with your pain. It is a very difficult disease to live with. It probably took me at least a year before my body really felt normal. (Remember, though, I had multiple surgeries in a short time and was not too healthy to begin with.) Maybe you should try walking for a bit before you really dive into videos again. It would be easier on your incision and may not make your intestines churn so much (just a thought). Or you could just modify your workout. Now, my favorite video is Cardio w/weights. The only real reason I like it best is because the last cardio portion has you stepping to "Build Me Up, Buttercup". My 7 year old starts singing, and it is a hoot! Makes her want to get and dance, too. Anyway, my advice is to give yourself time- your body will tell you what you can do on a given day. Try not to push yourself too hard (I know it's frustrating what you can't do...) and try to eat the healthiest foods that you can tolerate. Do you have a favorite dvd? They are all good. My daughter learned to count backwards before she could count forwards thanks to Cathe (four more,last three...)!
 
RE: Anyone out there with an ilioanal anastomosis or os...

Hi KTsMom,

I cannot give advice regarding your condition but you have my thoughts and prayers. I think you seem so positive though, trying to continue to keep up with a regular workout routine. I know quite a few people who would be all over that excuse not to excercise!!! We all know the type...... "My doctor told me to avoid exercising because it makes me sneeze......." or "My doctor adivsed me to avoid exercising because I sweat too much"!!! etc., etc.!!!

Anyhow, I did notice you mentioned about knowing where to get a deal on a precor. I would love to eventually own one to have in my workout room at my house. Can you give the name of the type you have? You must LOVE having one at home - - how great to be able to just hop on when you want a bit of cardio variety!!

Good luck with your recovery.

Freckles
 
RE: Anyone out there with an ilioanal anastomosis or os...

Freckles, thanks for the chuckle!!! You are so funny! I bet you keep all of your friends in stitches. I bought Precor Elliptical EFX 5.33. You can look at them at precor.com. I talked the salesman down about $600. plus I asked him to throw in the sweat mat. It's like buying a car. You can negotiate. I love it and I know I will be using it well into my 80's!!! FYI - people I refer to him will get the same deal, plus 0% financing.
I can actually use it with my 20 month old in the room and there is a key that locks the pedals in place for child safety. On a funny note, everytime my daughter reads a page from a sesame street book about monsters exercising, she points to the Precor and says "Mommy". :)
 
RE: Anyone out there with an ilioanal anastomosis or os...

Your daughter sounds so cute!!! My baby sits on my belly when I do the abs section of Cathe dvds. It makes me laugh so hard. Laughing must burn calories, right? It is good for the soul, anyway! Thank you for the great advice. It may take more than 2 more week to get back into Cathe's dvds. I will try to be patient. Thank you for your words of wisdom.
 
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