I have a colostomy (as a result of surgery for diverticulitis and peritonitis), and I am still getting used to it. In a few weeks, I'll be well enough to begin exercising and changing my diet habits for the long-haul.
I was wondering whether anyone else here was living with an ostomy, and if you had any suggestions for exercise and diet? My colostomy will be reversed in a few months, and I'd love to be as healthy as I possible can before going into surgery. I'd also like to find new ways to live more comfortably and actively with my condition.
Well I think you are my first fellow ostomist on this board which is saying something considering how many people use it Anyway, I have an Ileostomy due to a ruptured bowel caused by Ulcerative Colitis. I don't know, bowels are more trouble than they are worth My ostomy is a permanent one, but I am always thrilled when I hear stories of other people who can have theirs reversed. It's hard to get used to having one, but it must make it easier knowing it isn't permanent.
Anway to answer your question about exercising, for the longest time I couldn't exercise at all, even walking was a chore, but I have had 3 years with 3 major surgeries and LONG recoveries. This year though I have been surgery free and in January I started walking whenever I could, and in June I felt ready to take on more structured exercise and I bought a Tony Little Gazelle Rider. It is awesome, such good fun, and no strain whatsoever on the abdominal muscles. I have lost 61 lbs in 16 weeks and I am sure that a lot of that is down to the Gazelle. I really would recommend it. That and plenty of walking
The diet I follow is a weight watchers one which is great because if you find that something gives you extra wind or something you don't have to eat it like on some diets where you can only eat certain foods.
I think it's a brilliant idea of yours to lose weight before you are due to have more surgery because the lighter you are the easier the recovery!! Good luck,
Ammi, thank you SO much for your kind reply! I have been home from the hospital for almost three weeks, and I expect my incision area will be completely closed (although still 'fragile') in another week or so. Only in the past few days have I felt like I had enough energy and regained strength to start planning in a concrete way to lose weight and get more fit.
I was very very lucky, in that I developed a severe bout of diverticulitis that led to peritonitis -- the lucky part was the medical care I received, from my primary physician who fought my insurance to get a CAT scan and who had me in the hospital right away, to my surgeon, the best in the hospital, they say. Two nurses spoke of how the surgeon performed surgery on their children. I reckon you can't get a greater endorsement than that. I'm also lucky that the healing has been so smooth. In one month, I went from 106 degree (41 celsius, I think) fevers to being here online. The colostomy has been a challenge, but it's tempered by gratitude, and as you say, I am lucky that it will be reversed. ... With time, to my surprise, it's becoming a natural (sort of) part of me, and I'm not nearly so freaked out by its presence. Hence my thoughts of exercise and diet.
I hope that for you the ostomy has reduced or eliminated the ulcerative colitis. I'm just sorry you had so many surgeries. Congratulations on being one-year-free -- that must be a great relief. And then to turn your return to health to a chance to become even healthier is Wonderful!
I, too, am going to join Weight Watchers. I hadn't thought about how the flexibility will help me, but you're absolutely right. I am supposed to avoid seeds, nuts and corn, so I'm going to need some flexibility. There is debate as to whether these foods affect diverticulitis, but given my recent 2-weeks in hospital, I'm not chancing it.
And as for exercise, right now my only plan is to walk. No crunches in my near future -- but do you do any muscle-toning work that you could suggest? and any fiber tips? Is fiber something you have to pay attention to, also?
Wow that is brilliant that in just another week it will be a month and you expect your incision will be healed. In all of my surgeries I have had terrible problems with healing, in fact 3 years on from my first one I still have a wound that isn't 100% healed
I am glad to say though that my UC has completely gone, it went with the bowel removal, so at least I dont have to suffer with that.
I currently don't do any muscle toning exercising, when I am ready for that I will check with my GP first and then join a gym. I won't do anything that involves using my abs, but anything else they can suggest when I join up and have an induction I will be ready and willing to try anything
As for my diet, as an ostomist you hear all sorts of stuff like don't eat popcorn, corn, nuts, peas etc. Now if I remember correctly seeds etc will effect your diverticulitis, so this is probably not going to make a difference to you. But I have found I can eat anything I want, including the so called 'no no' foods. You just have to remember to chew everything really really well.
I have to make sure I get enough salt in my diet, but other than that, and watching my WW points intake, my diet is pretty much as it was before. I don't have to have more fibre, but then I have an Ileostomy, which always produces a very loose consistency. I think colostomists can actually get constipated, but not ileostomists. Oh and I need to drink a LOT, not only because of the problems we suffer with dehydration, but because I am thirsty ALL the time.
I am not sure if you have found any ostomy support groups, or if you even want to find one, but when I knew I had to have surgery I found a wonderful site, without all the wonderful people on there I know I couldn't have dealt with the surgery and life with an ostomy as well as I have. Anyway if you want to check the site out its http://st80.startlogic.com/~ostomate.../yabb2/YaBB.pl That will take you to the message board, but once there you can click on all sorts of links that will take you to other sections of the site to learn more about ostomies, supplies, etc. I have learned more on that site than any doctor, or stoma care nurse could ever have told me
One thing I learned which is a GODSEND and I share it with any ostomists I can is Hydrogen Peroxide 3% makes the BEST ostomy deoderant there is. You just put a small amount in your bag when you change it, then when you empty or change it there is NO smell!!! I would NEVER be without half a dozen bottles of the stuff in my house LOL.
Take care, and I hope your recovery continues to go as well as it has been,
You have no idea how reassuring it is to talk with someone who also has an ostomy. I haven't talked with anyone -- just browsed a few websites I googled and the convatec site. Time and again, what you write strikes a chord. For one, I'm terrified of abdominal exercise, and probably should be. The incision may be healing, but that doesn't mean all is mended, especially internally with all that stitching I can't see. And the hydrogen peroxide suggestion -- thank you thank you thank you! I've been struggling with that issue. I'll go to the store tomorrow to pick up the peroxide.
Three years later, you still have a wound from one of your surgeries? That's terrible! I can't imagine how hard these few years must have been. I'm just glad to hear that you no longer suffer from UC. I've heard of the pain and problems it can cause.
My illness and recovery have been this Oz-like whirlwind experience. I went into the hospital on the 14th of July, spent the next few days in a feverish blur, and had surgery on the 19th. I was home on the 26th, and I've just been taking it easy and slowly taking on tasks. The second week home, I started changing the pouch myself. And loading and unloading the dishwasher. lol. Who knew such a common task could be a painful challenge and then a benchmark to wellness?
My main challenge now, is that my stoma is inverted and lies just slightly above and to the right of my navel (ie, in the curve of my soft waistline). I have NOT been able to keep a pouch on for more than 24 hours without breaking the seal, at least not until this last application -- where it lasted 48 hours. woo hoo. So I've tested every system convatec makes, plus a few made by other companies. I've mainly changed the pouch daily, sometimes twice and three times. ... Still, strangely enough, I'm getting used to even that. I just don't know how I'll get back to work with the worry about breaking seals.
I'd really like to join a gym for the treadmill and eliptical. I don't know about toning though. So much involves your abdominals, from crunches (of course) to leg lifts to certain arm toning. It's going to be a big day when I start all that, I reckon.
It's good to hear of someone else who is eating everything fine without trouble. Several of my family members have diverticulosis and eat what they like. and the Mayo Clinic says there's no evidence supporting the seed/nut/corn theory. Still, my doctors are emphatic, and my memories of the hospital are still very fresh, so I'm being safe for now. and beyond the diet, like you, I'm drinking Lots of water to avoid blockage problems.
I tried the support site link you sent, but it didn't come up. Could you send it again?
I don't mind writing here at all, but there is so much more I could say in an email. I see you don't have your private message function turned on, but I do, so if you want to send me a private message and send me your email address I would love to be able to write to you. In case you don't know how to PM, just left click on my name on the left, a drop down menu will come up and you can just choose send Ammi a private message. Click on that and a new page will open. In the mean time though lol, to reply to your last message.
First of all that link I gave you was ok, I clicked on it and it took me to the site. So all I can suggest is that you put Shaz's Ostomy Pages in your search engine and I am sure the site will come up. Sorry that the link didn't work.
Ok I am going to be like a walking advertisement now, but have you tried Coloplast Easiflex bags yet? AND, have you tried any with a convex base plate (flange/wafer/seal or whatever you prefer to call it). You mentioned having a slightly inverted stoma, well the convex flange is designed to make sure the stoma is 'directed' into the bag properly. I don't wear those, my stoma has a gorgeous spout But I have read about the base plates, and I know lots of people on Shaz's wear them. I do however wear the Coloplast Easiflex bags. I have a dip between where my stoma is and my belly button, and no other base plate of any other bag by any other company, not even Coloplast's old base plates would stay on. They would come off where the dip is. But the easiflex extra base plates are soooooo soft and flexible, they fit the dip and they stay stuck. I use a two piece system, but a friend uses the one piece and we both swear by how fantastic they are. I would really really give one a try. Most companies are happy to give free samples, and maybe your stoma care nurse may be able to get you some to try. I know all about the worry about going anywhere and worrying that you will have a 'leak' in fact before I got Easiflex my bag even came right off three times in bed and I had quite a few near misses when I have been out. I don't think the worry ever goes, but at least with a good bag with a great seal the worry isn't so great!
It's funny when it comes to what an ostomist is supposed to eat and not eat, and how one doctor will say it doesn't matter, whereas another will say it does. My hospital obviously were either ignorant to an ostomists 'rules' or didn't agree with them because the first meal I had when I was allowed to eat again, was some horrid concoction, like a casserole, but it was full of sweet corn and peas!!!!! I didn't eat it because I was too afraid, but over time I have learned I can eat what I want, and that's what I do.
I have had one partial blockage, which actually are more often than not caused by adhesions internally, and OMG it wasn't nice at all. But thankfully after a few hours old stomey errupted like a volcano and the relief was just like when you finally have your baby after being in labour for hours I haven't had a blockage again, so I guess it was just one of those things!!
With the exercise issuse, I too have been thinking that even some arm toning exercises will pull on my abs, it's probably one of the reasons I have put off and keep putting off joining a gym. I have to tell you though that the Gazelle Rider I have got is fantastic, it doesn't work the abs at all, well unless you want it to, but the basic gliding motion doesn't, and yet it's a good aerobic exercise which is helping me lose weight.
Walking, well the furthest I have walked is 5 miles which was on my birthday and when the weather is good I guess I walk 2 miles once a week at the beach, plus I walk to the shops whenever I can, which is about a mile. I think you, especially so soon after surgery just need to take short walks until you get your full strength back. Think how hard it was to fill the dishwasher, and I bet the first time you got into the bath, or out of it, or washed your hair in the shower you were worn out. I know I was.
As for my wound not being closed fully, it's because it's under my stomach, so the weight of it keeps pulling on the very week scar tissue and it opens, but not like a hole, it looks more like an area of very pink skin, kind of like a burn. It's not nice, and it's one of the reasons I have to get this weight off. The doc says I can have a tummy tuck on the NHS (free) once I have the weight off because the hanging skin will still cause the same problems my fat tummy did. So although I don't want more surgery, it will be worth it to finally have a flat tummy and NO wound anymore
How are you feeling post surgery, I am guessing the ostomy was a complete shock to you, and I have heard that in instances like that people do suffer more with depression after surgery. Though that said, I knew I was having mine, it just happened sooner rather than later because of my bowel peforating, and I still ended up with depression. Though I guess it didn't help that I had two more surgeries and MRSA along with them, and then the non healing wounds!!! Oh well at least I don't have UC anymore and I tell you there were times when I was suffering with that when I wish I would die. It was horrendous!!
Glad the hydrogen peroxide tip was welcome. Make sure it's only 3% though because more than that could cause problems. I have been using it, and many others have too for years, and one ostomate on Shaz's even poured it directly onto his stoma to test that it didn't do any damage. He is a nurse and only did it after extensive research of course, he isn't stupid. But I guess before he was going to suggest it to the board, using the HP as a deoderisor, he wanted to be able to assure people it's safe. I use so much in a month that it got a bit expensive, so I now get it on prescription which I don't pay for because of the ostomy. So if my doctor is happy for me to use it and the guy on the board proved it's safe, well it makes me safe. Use a capful or more depending on how it works for you, some people need a couple of drops, others need quite a lot more. I guess it's just a case of trial and error. Good luck, and enjoy knowing that you will be one of the few people in the world that can say their poop doesn't smell LOL
Ok I have rambled on long enough now, good job I am not shy about all this sutff huh, lol. Take care, and don't forget to let me have your email address, we can get down to the nitty gritty of everything that way
Thanks for the invitation to email -- it's great to have someone to talk with about the ostomy. I wasn't online much today -- sort of a low day as I struggled a bit with the pouch Again -- and it's too late to write much today, so I'll send an email tomorrow. I know what you mean about the depression that comes with managing a health condition. I'm actually much better with this than I have been with a few boyfriend breakups and other similarly less important things. lol. Still, it's a drain sometimes.
Tomorrow, I'm graduating from walking the local shops to walking the track at the college. Not pushing it, but strolling with purpose.
Thanks for your amazing post! I'll write more tomorrow.
Autumny
Ostomy, exercise and diet
Anyway, I have an Ileostomy due to a ruptured bowel caused by Ulcerative Colitis. I don't know, bowels are more trouble than they are worth 
My ostomy is a permanent one, but I am always thrilled when I hear stories of other people who can have theirs reversed. It's hard to get used to having one, but it must make it easier knowing it isn't permanent. 
and I had quite a few near misses when I have been out. I don't think the worry ever goes, but at least with a good bag with a great seal the worry isn't so great!