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08-01-2014, 04:46 AM   #1
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Having a stoma makes being on a gastro ward much easier

I'm currently on a hospital ward with a bathroom shared between me and three other lovely ladies. One is a 93 year old, and moves very slowly, so she takes a very long time in the bathroom. One currently has a very upset stomach. The other is doing a prep for a colonoscopy.

I am so glad I have an ileostomy, since when my bag starts filling up, it does so slowly, so I can easily wait an hour or two before emptying, and I can wait without any pain or discomfort; totally different to when I went to the toilet the "normal" way. It takes me all of five minutes to empty; again - so different to the two or three hours I used to take in the bathroom pre-ostomy.

I hate to think how much more unbearable this hospital stay would have been if I didn't already have my stoma. This hospital just didn't take into account how many bathrooms would be needed on a gastro ward!

Even when I had an NG tube which was upsetting my stomach so much that, for the first time with my ileostomy, I had such watery output that I was getting multiple leaks, a leaking stoma bag is far preferable to ordinary diarrhoea (at least, with the rectal problems I had pre-ostomy, a leaking stoma bag is preferable).
08-01-2014, 07:21 AM   #2
Lisa
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Sorry to see you are in the hospital - but glad you have a bright side to having hte stoma! I can't imagine having 4 people share a bathroom in a gastro ward...someone definitely was NOT thinking right with that set up!
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08-01-2014, 08:11 AM   #3
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Scopes are a walk in the park. No pain, no sedation; I don't even need prep anymore.
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08-01-2014, 08:21 AM   #4
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Scopes are a walk in the park. No pain, no sedation; I don't even need prep anymore.
Yeah, yeah...rub it in!
08-02-2014, 08:10 AM   #5
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Funnily enough, I had two scopes while I was in two different wards of the same hospital, and they did the prep quite different.

Despite the scope being performed in the same place, one ward prepped me the night before by drinking 2 litres of prep in 4 hours (not easy, even if you mix it with squash), while the other gave me 1 litre with no time limit 4 hours before the procedure

Needless to say, both had the same results, just don't see why one ward should make it so much more difficult (maybe the nurse didn't like me).

Incidentally, why do they have to make that stuff so unpalatable.
08-02-2014, 09:17 AM   #6
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Incidentally, why do they have to make that stuff so unpalatable.
I thought this drinking contrast for an MRI the other day. I was supposed to drink a litre, but since I'm missing some digestive tract, they let me get away with 600ml. It was still awful, and acts as a laxative even though it wasn't being used for that purpose. That was beneficial though, because I thought I'd feel full and sick after drinking all that, but it just ran straight through. I was also glad to have a stoma for that - no running to the toilet, I could empty it all out in my own time. I did worry my bag was going to overfill and burst all over the expensive MRI scanner though, but luckily it held out.

The worst think I've had to drink - which I've had both this hospital stay and a previous one - is a dissolvable phosphate supplement. The only good thing about the NG tube was that it could be flushed straight down the tube. Once the tube was out, I started refusing to drink it, it was too hard to get it down. But then someone told me it was available in pill form, and I've no idea why no one told me that a lot earlier. Unless someone is unable to swallow pills for some reason, I don't see why anyone would want to drink the dissolvable one. Even mixed with squash or juice it was horrible.
08-02-2014, 09:33 AM   #7
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I thought this drinking contrast for an MRI the other day. I was supposed to drink a litre, but since I'm missing some digestive tract, they let me get away with 600ml. It was still awful, and acts as a laxative even though it wasn't being used for that purpose. That was beneficial though, because I thought I'd feel full and sick after drinking all that, but it just ran straight through. I was also glad to have a stoma for that - no running to the toilet, I could empty it all out in my own time. I did worry my bag was going to overfill and burst all over the expensive MRI scanner though, but luckily it held out.

The worst think I've had to drink - which I've had both this hospital stay and a previous one - is a dissolvable phosphate supplement. The only good thing about the NG tube was that it could be flushed straight down the tube. Once the tube was out, I started refusing to drink it, it was too hard to get it down. But then someone told me it was available in pill form, and I've no idea why no one told me that a lot earlier. Unless someone is unable to swallow pills for some reason, I don't see why anyone would want to drink the dissolvable one. Even mixed with squash or juice it was horrible.
You really don't want to paying for a new MRI because you broke the last one

One thing I've found about having a stoma - both been told and see for myself - that missing part of your degestive system can mean you don't necessarily process tablets. When I was in hospital last week a doctor stopped me taking one of my tabs as he said they just come straight out the stoma virtually untouched and therefore useless.

When I first had rhe stoma 6 weeks ago, it took me ages to realise that the round, hard things coming out of the bag were tablets. Maybe I would have done but by that time they were no longer white
08-02-2014, 12:59 PM   #8
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I've heard that too, but I've never noticed any pills failing to have an effect that did before, and I do take a lot of pills. I've never seen any coming out the stoma unchanged either. Food on the other hand.... I just don't seem to absorb calories properly. Is that something that happens with an ileostomy? I might have to start a thread on this, because doctors just can't work out why I have to eat so much to gain any weight.
08-02-2014, 01:07 PM   #9
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I've heard that too, but I've never noticed any pills failing to have an effect that did before, and I do take a lot of pills. I've never seen any coming out the stoma unchanged either. Food on the other hand.... I just don't seem to absorb calories properly. Is that something that happens with an ileostomy? I might have to start a thread on this, because doctors just can't work out why I have to eat so much to gain any weight.
I was told that even though I'm eating loads, that I'm not putting on much weight because I was losing it all through my stoma. However, we were discussing that when I had been hospitalised due to dehydration because my stoma output was so watery. I think, with good firm output, that calorie absorbtion should be more or less normal. That may depend on how much bowel was removed I guess, but I'm no medic.
08-02-2014, 05:39 PM   #10
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Scopes are a walk in the park. No pain, no sedation; I don't even need prep anymore.
I don't know about no pain. My ileoscopy was quite uncomfortable - like really bad gas pains.
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08-02-2014, 05:55 PM   #11
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I don't know about no pain. My ileoscopy was quite uncomfortable - like really bad gas pains.
Thats awful. I didn't even have gas pain. Maybe it's because I don't have much left.
08-02-2014, 06:26 PM   #12
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Thats awful. I didn't even have gas pain. Maybe it's because I don't have much left.
No idea what makes the experience different from one person to the next. The further in my GI went, the more it hurt. Totally worth it if you're interested in seeing your insides in full HD 😊
08-02-2014, 06:52 PM   #13
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08-03-2014, 03:36 AM   #14
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I was told that even though I'm eating loads, that I'm not putting on much weight because I was losing it all through my stoma. However, we were discussing that when I had been hospitalised due to dehydration because my stoma output was so watery. I think, with good firm output, that calorie absorbtion should be more or less normal. That may depend on how much bowel was removed I guess, but I'm no medic.
Thanks. Yes I know it seems a long shot that my stoma is the problem given my output is pretty normal the majority of the time. But I'm clutching at straws since my doctors just can't find an explanation. My surgeon thought I may have some muscle wasting condition, especially since, despite being so underweight, I'm relatively healthy - good blood tests, blood pressure, heart rate, etc. and although of course I get exhausted much more easily than a healthy young person, I can walk much further and have much more energy than another very underweight patient on the ward. Only the very last part of my small intestine was removed.
08-03-2014, 04:05 AM   #15
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Thanks. Yes I know it seems a long shot that my stoma is the problem given my output is pretty normal the majority of the time. But I'm clutching at straws since my doctors just can't find an explanation. My surgeon thought I may have some muscle wasting condition, especially since, despite being so underweight, I'm relatively healthy - good blood tests, blood pressure, heart rate, etc. and although of course I get exhausted much more easily than a healthy young person, I can walk much further and have much more energy than another very underweight patient on the ward. Only the very last part of my small intestine was removed.
If your surgeon can't figure it out, I don't stand much chance. The best thing for me (!) is that having lost so much weight during the 10 months having a bowel tumour and unable to eat, having had tne bad boy out, being told to put weight on is terrific - i'm eating pretty much anything I want and using it as an excuse to eat out all the time. It's not often anyone gets told to put on weight, so I'm making the most of it.
08-03-2014, 06:07 AM   #16
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I lost 22 pounds while in the hospital after having my ileostomy placed. For me, the weight loss is due to food passing out of my system so fast. It took about 4 months after stoma surgery before my system slowed down and I started to gain some back. However, even now, 2-1/2 years later, I can eat everything I want and never get over 120 pounds. It's fun! I love to see the look on people's faces when I eat like a pig, get stuffed, and 30 minutes later I'm back to snacking while they are still miserable from overeating.
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08-03-2014, 06:20 AM   #17
Tricky Dicky
 
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I lost 22 pounds while in the hospital after having my ileostomy placed. For me, the weight loss is due to food passing out of my system so fast. It took about 4 months after stoma surgery before my system slowed down and I started to gain some back. However, even now, 2-1/2 years later, I can eat everything I want and never get over 120 pounds. It's fun! I love to see the look on people's faces when I eat like a pig, get stuffed, and 30 minutes later I'm back to snacking while they are still miserable from overeating.
I know I'm only 7 weeks post-op, and that was after 10 months of not eating, but my body seems to have changed. I eat and eat and don't seem to get full at all, then all of a sudden I instantly feel stuffed. i guess my body is still adjusting to the input volume increase after so little for so long.

On friday evening I ate out with friends. Even before I was ill, I would only eat a starter and a main course, never a dessert, but on Fri I ate 3 big courses. When
I got home shortly after, I started eating crisps ! It's quite strange.

I am a good cook, and several times I've cooked too much and I think
I'll put it all on my plate and leave what I can't manage - of course, I end up eating it all.

I'm not complaining, eating freely without pain is fantastic - having been cleared of cancer is even better. Have a stoma for a few months is nothing by compsrison.
08-03-2014, 07:22 AM   #18
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If your surgeon can't figure it out, I don't stand much chance. The best thing for me (!) is that having lost so much weight during the 10 months having a bowel tumour and unable to eat, having had tne bad boy out, being told to put weight on is terrific - i'm eating pretty much anything I want and using it as an excuse to eat out all the time. It's not often anyone gets told to put on weight, so I'm making the most of it.
Most of my life I've been being told to put on weight. If it wasn't for the fact I can't leave hospital until I do, it wouldn't be bad. Also I don't enjoy food at all when I'm having so much of it, I hate the feeling of eating when you're already stuffed. Hospital food doesn't help at all either.

I hope you're recovering well now.
08-03-2014, 07:25 AM   #19
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I lost 22 pounds while in the hospital after having my ileostomy placed. For me, the weight loss is due to food passing out of my system so fast. It took about 4 months after stoma surgery before my system slowed down and I started to gain some back. However, even now, 2-1/2 years later, I can eat everything I want and never get over 120 pounds. It's fun! I love to see the look on people's faces when I eat like a pig, get stuffed, and 30 minutes later I'm back to snacking while they are still miserable from overeating.
I've become something of a tourist attraction in the hospital. Nurses come and read my food and fluid records, and even other patients are amazed how much I'm eating, with such slow weight gain.

I think it would be fun if I were at home and eating what I feel like, when I want, without the pressure of weigh-in days when I learn how quickly (or otherwise) my weight is going up and I'll stand some chance of going home.
08-03-2014, 07:38 AM   #20
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Most of my life I've been being told to put on weight. If it wasn't for the fact I can't leave hospital until I do, it wouldn't be bad. Also I don't enjoy food at all when I'm having so much of it, I hate the feeling of eating when you're already stuffed. Hospital food doesn't help at all either.

I hope you're recovering well now.
I'm doing well, thsnks. The op may have only been 7 weeks ago, but, stoma apart I'm recovering from that well and feeling good. Admission for dehydration taught me a bit last week, won't let that happen agsin.

This is all a learning curve really. I can live with the stoma - not what I was thinking a few weeks ago - but it's not nice. It never occurred to me before that
I'd be managing something like this in my life. I know it's there for a reason, the op to remove the tumour was far more important than just being inconvenienced for a few weeks with a bag

All in all doing pretty well. I do have to attend dialysis 3 times a week preventing me returning to work, but one thing at a time.

I think you're in the UK, yes ? Then the hospital food is probably not good. Ours in Brighton was just about edible, but even when the stuff was ok, there was very little of it. How they expect people to get better in it, I don't know, at precisely the time when you need to be well fed to get better.

We have a Subway on site, the only accessible food other than the hospital stuff. It may not be the healthiest thing, but I used thst outlet quite a bit. I did find out there are a couple of cafes within a few minutes walk, so hext time, I'll be heading there.
08-03-2014, 09:33 AM   #21
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Yes, I'm in the UK. The food is appalling. I'm here specifically to gain weight, and the hospital does not provide a low-fibre diet (which I need because my stoma blocks very easily). I've been in other hospitals before, and getting a low-fibre menu was never a problem. I couldn't believe that they don't provide one, nor that my dietician and consultant here do not seem at all concerned that I don't get any main meals, usually having to make do with a plate of rice which I add mayonnaise to for calories, or bread and butter, or food from home. There are coffee shops in the hospital, but that's about it.

You may well get used to the stoma. I had a lot of time to prepare for mine, so the mental adjustment was not an issue. But it takes a while to find all the products, routine, diet, etc. that works for you. But your's is temporary? Do you have a date for a reconnection surgery?
08-03-2014, 09:56 AM   #22
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Yes, I'm in the UK. The food is appalling. I'm here specifically to gain weight, and the hospital does not provide a low-fibre diet (which I need because my stoma blocks very easily). I've been in other hospitals before, and getting a low-fibre menu was never a problem. I couldn't believe that they don't provide one, nor that my dietician and consultant here do not seem at all concerned that I don't get any main meals, usually having to make do with a plate of rice which I add mayonnaise to for calories, or bread and butter, or food from home. There are coffee shops in the hospital, but that's about it.

You may well get used to the stoma. I had a lot of time to prepare for mine, so the mental adjustment was not an issue. But it takes a while to find all the products, routine, diet, etc. that works for you. But your's is temporary? Do you have a date for a reconnection surgery?
That is quite appallng that they cannot provide you with an appropriate diet, and I must say, quite surprising. You should complain. While it shouldn't be necessary, but maybe you should also arrange for suitable food to be brought in to you. If I was closer, I'd bring you food and suuplies.

I had no time to prrepare for mine. When they were explaining the planned op, I know it was mentioned as a possibility, but they didn't say it was likely, so I never gave it any thought. The op turned out to be more complicated and the stoma necessary. When I woke, I didn't really know what a stoma was.

They initially said 4-6 months. As I don't need chemo, I gather it could be earlier. I have a gastro appoitment in 2 weeks, so I think reversal will be a discussion subject.
08-03-2014, 02:28 PM   #23
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I hate to hear your still in the hospital. I read on another post you have been there over a month. I feel for you . I was in the hospital for over a month in traction due to a broken femur bone. I remember one of the hardest things for me was to see all the other patients come and go . I was diffently the veteran of the room . Anyway I hope you can get the weight needed to get sent home .
08-04-2014, 03:26 AM   #24
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That is quite appallng that they cannot provide you with an appropriate diet, and I must say, quite surprising. You should complain. While it shouldn't be necessary, but maybe you should also arrange for suitable food to be brought in to you. If I was closer, I'd bring you food and suuplies.

I had no time to prrepare for mine. When they were explaining the planned op, I know it was mentioned as a possibility, but they didn't say it was likely, so I never gave it any thought. The op turned out to be more complicated and the stoma necessary. When I woke, I didn't really know what a stoma was.

They initially said 4-6 months. As I don't need chemo, I gather it could be earlier. I have a gastro appoitment in 2 weeks, so I think reversal will be a discussion subject.
I mostly am having food brought in now. Occasionally the hospital not only has something on the menu I can eat, but actually delivers the meal I've ordered and not something random, but I now have some back-ups in the ward fridge and the nurses have kindly let me use the microwave in the staff kitchen.

I shared a ward with a woman after my first stoma surgery who I kept in touch with. She was in a similar situation to you and had her stoma reversed after a few months and is very happy, and fine now. I hope yours goes as smoothly as hers has.
08-04-2014, 03:29 AM   #25
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I hate to hear your still in the hospital. I read on another post you have been there over a month. I feel for you . I was in the hospital for over a month in traction due to a broken femur bone. I remember one of the hardest things for me was to see all the other patients come and go . I was diffently the veteran of the room . Anyway I hope you can get the weight needed to get sent home .
Thanks. Yes, I've been on the ward longer than anyone else. Last week the dietician said she thought I'd be here another month yet, but I hope it's not going to be as long as that. I think I'm getting kind of resigned to it now. At first they told me it would be a two week stay, and at that point two weeks seemed impossibly long. Now I've already done four, so I guess I'll get through it somehow. I just wish I had more confidence that I will get out of here somehow. Up til now it had been all really nice patients on the ward, but now one has moved in who's making it really unpleasant and disruptive.
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