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Post by Cathy T on Sept 12, 2003 12:21:18 GMT -5
Its been almost 5 months for me now (although I was in the hospital the first 2) and it still seems my whole life revolves around my stoma, bag, changing, worrying about making noises (flatulence noises in public, which my stoma almost always makes when releasing) etc.
Does this EVER get any better?
I mean every day almost i find out something else I can't digest properly, oops one more food off the list of things I can have. I really miss cheese. I can have a bit but over indulge and I spend a whole day feeling like I've got a complete bowel blockage (severe cramps and not passing anything)... and risk going back in the hospital.....
Ice cream....I can take it IF I water it down with cola or milk (can't tolerate dark colas, only sprite or 7 up) but if I eat ice cream straight, no cramping, but I just vomit the ice cream up about 2 hours later....., One reason I'm not gaining the weight my doctors want is I used to eat ice cream every day, and I can't now. I just don't care for it watered down as much as 100 percent you know?
Does anyone else have a big problem with red meat? I don't seem to be able to digest it very well at all and I'm so sick of chicken I could scream. I fix my husband rib eye steaks and I take a couple of bites but any more and, well, I get nauseated. I get nauseated after one bite of a hamburger too, which I used to love. At leasst that one gives me a warning not to eat it eh?
Due to all my other physical problems I can no longer cook, so I mostly eat TV dinners and take out and I pretty much have to stick to the Uncle Ben's rice and pasta bowls or Chicken alfredo.....I love chicken alfredo but every day? Geez.....I do seem to be able to tolerate some of the frozen "salisbury steaks" but everybody knows there's not much real meat there, taste wise.
Will this get any better? I mean, will my digestion ever "improve" or is this as good as its going to get? Remember I had a colon resection, illeostomy and colostomy (stoma on left side 1/2" outie.) Also I have a nephrostomy, but I've had that before in the past and it doesn't create any of these problems, it just creates alot of pain.
Cathy
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Post by Jason_D on Sept 12, 2003 15:43:48 GMT -5
Hello There. Ohhhh dear. It sounds like thing are pretty crappy at the moment Cathy. Sorry to hear that.  The colostomy stoma shouldnt make that much difference - if any - to the actual stomach digestion of food. It can ofcourse effect the stool output, gas output etc because of the fact youve a lot less bowel than usual. I remember in your last post you mentioned the chemo radiation was eating your insides away and that was why you had a colostomy. I am wondering if its the chemo specifically causing this, and not the ostomy itself. I would bet my house on it, and cos this is a colostomy board and website and not a cancer / chemo scpecific website theres only a tidgy amount of info specific to that I can offer you. Because of the sheer number of problems you've got its very difficult for us ostomists with no medical qualifications to give you exact information on your condition - esp with the double kidney nephrostomy which to be honest is something I'd never heard of til your first post. :/ Im sure with time things will get better somewhat, but it does certainly look like pinning down your diet is going to be a big part of the scheme to get things feelin better and finding the cause of the vomitting, digestion issues etc would then help too. Im sure you've prolly already seen a doc about it, but if you havent, please do go asap to get a medical opinion on what you can do for the digestion. Im pretty sure controlling digestion will be the key to a quieter more stable colostomy stoma. You do sound quite depressed and unhappy, which anyone would, and Im wondering if you are on any anti-depressants? Those might make you feel a wee bit better morally speaking if not physically, and thus give you more energy to face the problems and continue to fight them as well as you have done so far? If already on them, maybe they can try a slighty higher dose. My shrink took months to find a dose right for me. Sorry this is such a crappy answer, but maybe someone here who has had major chemo will be able to offer you some specific advice. Take care Cathy - hope things soon pick up and that you feel a wee bit better. And in the mean time we're always here for ya. ;D Buh bye now, Jase. |
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corvus
Posted a few msgs
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Post by corvus on Sept 14, 2003 22:35:53 GMT -5
jason is right about the digestion as far as I know, it took my bowles about 6 months to calm down but I had not recovered from the previous operation which removed some large and small intestion, I was admitted avery sick with paratinitus, bacterial infections and perferations though no cancer and no radiation treatments. meat is the only thing I process well, vegtables create gas and beans smell plus gas, grains are ok along with potatoes eggs and all milk products seem to be ok with little smell or gas produced, hope this helps, hang in there it will get better
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aunt
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Post by aunt on Oct 25, 2003 16:28:57 GMT -5
I also am a double winner with a colostomy and a urostomy. The operation alone was traumatic to my body. It took me at least 5 months to start to feel normal physically again. Then the emotional thing hit. I and my husband were emotionally exhausted. The situation with the wafers and bags and urine and feces and leaks was enough all of itself. There are always complications too that have to be taken care of. I became intimate with my medical support team and the local pharmacy I used. By the time life started to become normal, we had used up all of our emotional resources. I was happy to be able to do things again but I didn't really care about them for months. I was told that this was normal. That helped. I just kept putting one foot in front of the other and it got better over time. I found wafers that worked for me and I got faster at using them and they lasted longer and I have almost no leaks anymore--usually if I leave a wafer longer than I know I should. I carry a change of wafers in my purse and a change of clothes in my car. I don't really use them but they are there. It's been a year and a half now and life does seem normal. I've kept a food diary to find out what upsets my system and creates gas. I eat the gassy stuff only if I'm going to be home the next day. I work a normal job and lead the same life I lived before. I have not tackled irrigation yet because everything is going so well and I don't want to commit to the time it would take. Give this thing time and give yourself patience--it got better for me little by little--like a headache going away. Every once in a while I look down and think, "Gee, I've got two bags hanging there" and wonder if I'm wierd. Most the time, it doesn't even occur to me or the people around me. That's a big change from it being the be all and the end all. I wish you well and just bet that you'll take it in stride in time.
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Post by julima on Oct 30, 2003 3:45:48 GMT -5
Hi Aunt! Your post just did me the world of good  . I also got the double whammy (colostomy + urostomy) seven months ago, and although things are pretty good physically, the emotional side has caught up with me in the last few weeks, and I've been getting quite depressed.  Some of you may have noticed I haven't been around on the boards very much of late. It's kind of like I'm in denial, and tired of being an ostomate, and having my life revolve around it.  So I've been concentrating on other things. But it's good to read your post and see that it IS possible for life to get back to some semblance of normality with two bags (at least we're "balanced" people, eh?  ) Well done and thank you, aunt! Julie XXX |
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aunt
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Post by aunt on Oct 31, 2003 9:54:22 GMT -5
Hey!! So glad to hear from you! I have something to add about depression. At about 9 months my depression hit. My medical support team told me it was normal and right on time (I tell them everything that's happening out of the ordinary!!). That alone helped. It appears to be gone now--that was back last winter. I am now perky enough to try a vetetarian (almost vegan but my system can't handle all those beans) diet. Big upheaval and lots of effort but I'm up to it today. I couldn't have even thought about it in January!! This too shall pass! Love ya!
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So I've been concentrating on other things.
) Well done and thank you, aunt!