Hey guys, I am new to this site. My q is at the bottom of my post. I had surgery for UC, and have an ileotsomy. I was going to get the J, but decided not to. So, I have 25% of my colon floating in my pelvis, a fistula that bleeds when stressed because of proctitis in the rectum. However, I have a question, I am always so conscience about my ileotsomy, especially while going to a gym. I use to lift alot, model, and play sports. My sport life is over. I am too nervous to swim, go on roller coasters. I have developed OCD, Anxiety disorder, and almost thought about suicide after my surgery. I looked in the mirror and my muscle built frame, was a shell of itself. I refused morphine in the hospital and endured the pain. I developed a DVT, and one night my blood pressure dropped below 45, and my temp was 102.9, they had no idea what happened. Anyway, I dont want to bring anyone down, please my experience is different. My family divorced after my surgery. However, I see others with an ileostomy and they changed their life, they are doing great. I say to myself," Gosh why cant I be like them." I went back to school, but dropped cause of anxiety, I am 5 classes away from an A.S.
I just wanted to give you a brief history of me, and introduce myself. Now my question. I want to get back into the gym. However, the gym I go to is a roid gym. Everybody is huge and is on steroids or mass supplements. I would have been down for that about 3 years ago( before my surgery ). However, I get nervous, to go because I dont know what to wear to cover my ileostomy while working out. What do you guys suggest I wear? All I wear, when I go oout is hoodies and collar shirts( button downs ) because they cover the bag. However, in the gym, it gets too hot to wear that stuff. I cant wear a t-shirt cause these are the kind of guys that would look at you weird. What do you guys wear while working out at the gym, or what would you suggest. I dont expect anyone to understand why i just dont wear at-shirt, I just have tremendous anxiety. Trust me, it took me over 2 years to be really inimate with my g/f. It's just I was always known for weight lifting, with my friends, school mates, and people who knew about me. I just dont know what to wear. Thanks

Hi, I too was a gym rat for years before I developed UC, and immed had to get the jpouch surg,what a shock, I was 6' 225lbs and worked out everyday for at least an hour and a half,after major complications, two years later I was 118lbs. I now have a perm ileo and today I weigh 190lbs, i can now start lifting again, I bought a belt online it makes a huge difference you can wear loose muscle shirts, I created one by cutting out the arms and making a vneck out of an old t shirt.Good luck, and just be confident in yourself you will be fine!!

I'm so sorry you are having such trouble adjusting. I'm one of the ones who went to an ileo after failed j-pouch and am doing great. I think part of the reason is that my j-pouch didn't work so the ileo was a huge improvement. If you didn't see a huge improvement in your health wtih the ileo, that may be why you are having trouble accepting it. Or, it just takes some people longer.

As for the gym issue, I have a few thoughts. There are ostomy belts (the PHoenix is one I think that gives all over support) that look very much like back braces. You could wear it and if anyone said anything could say it was for back support. You could get the ostomy underwear that has a pocket inside to tuck the bag, then you could wear what you want.

Another thought is, try a different gym for a few months till you get comfortable. Maybe even one of the one on one places (in MA they are called Fitness Together). This would give you a chance to work things out and to build yourself back up a bit before entering the hard core environment you mentioned.

Believe me I know it is hard, but if it were me, I'd just do what I want to do. Who cares what these people think about you? YOu've been through a horrible experience and survived. That is something to be admired. Maybe you should start seeing a therapist to work through some of these issues; I saw one for 18 months and it helped a lot. Now when I go to the gym or a public pool, or any place else, I just let my bag hang out in the changing area. It's part of who I am and I don't really care what people say or think about it.

Over time I hope you can get past your anxieties and get back to enjoying things. I go on roller coasters, water park rides, swim whenever I can, use the hot tub whenever I can. I had a baby 2 1/2 years ago and am about to have another one in 15 days (not that I'm counting!). I hiked 7 miles to Ramona Falls at Mt Hood 4 months after my pouch was removed, kayaked 5 hours through Central Florida 8 months after.

It really is just a matter of getting out and doing it. Choose people to go with you who know your situation and your anxiety about doing things and then try. YOu might not get there the first try, but over time, you'll figure it out. Good luck and let me know if I can help.

Hi Crazy, first of all I am not a weight lifter nor have we gone through the surgery yet (my 17 year old daughter is going for step 1 on Thursday).

I think that you need to stop comparing yourself to who you were before you got sick. Start from today and slowly work up to the best you can be, a little each day. Maybe you need to find a different gym, if only for awhile. Maybe it would be easier to go someplace where people don't know you. Try a gym that isn't so body conscious. Many out there are more for getting people to be the healthiest they can be rather than weight lifting. That would be a great start.

I am sure that when you were weight lifting you gave yourself challenges to reach (amount to lift, number of reps, etc). Give yourself small challenges to start. Don't worry so much what others are thinking. You have an excuse for being "out of shape" so to speak. I, on the other hand, eat too much and am too lazy!

I also think that you may need to speak with someone (a therapist or someone) to help you accept what you have gone through. You have gone through a big change but your life isn't over. It's just different. You have nothing to be ashamed of. As the one who is not going through the illness and surgery, I am always in awe of what my daughter has had to go through and how strong she can really be when faced with this challenge.

Also there are several posters on here who are weightlifters. One I remember is a poster named Curious. He went through being very sick, surgery, having to rebuild his muscles. He had a youtube video where he should himself lifting 600+ lbs. It was very positive and gave us alot of hope for a post-surgical life (even though weightlifting is not an issue for us it showed that the surgery may be a diversion but it won't be a roadblock). Here is the link to the video. http://www.youtube.com/watch?v=EDoujZ1K8ww (I guess you may have to copy and paste it). You can also try to PM him.

Don't give up hope. Good luck.

I am in agreement about changing gyms. After years of working out in a gym that was dominated by men and women with different goals than mine (meat market + body building) I changed gyms to a non-chain, privately owned facility. What a difference in experience! My new gym is just used by normal people who are trying to maintain good health. My mentors are the 80 year olds who work out every day with the goal of keeping fit. No one is hung up on looks or physique; it's a very supportive and congenial environment with zero competition.

Sue

Hey Crazy,

First of all, you're not (crazy). Thought I would throw that in.

I agree with Bennie - that somehow you have to be willing to lose what/who you were during this process. Remember that who we are externally will always change - that is what UC and surgery taught me. Our bodies are bound to change and to fail as we go through life. I know, however, when you're in your 20s that's a hard thing to accept. If you can, you will go a long way to getting through the anxiety and stress of this all.

I didn't lift, but I did swim regularly. Imagine... bag on stomach, and wanting to swim. I realized either I had to get a lot of looks for the bag, or I could wear some long shorts and get some looks for wearing them up over my belly button like all the old farts in the pool (ever notice the old guys like to wear their suits up high?). So, I would put on a short, closed, bag and tape it down as best I could. Then I would wear my racing suit (knee length) and put on a long swimsuit over it - pulled up to the top of the ostomy bag. When i got in the lane, I would ditch the big suit and swim. I figured the only people who could really see the bag would be other swimmers, and no one was ever bold enough to ask except the guys I sometimes would swim with. They understood.

I hope that helps.

Steve