Talk Cancer

Question:

Yes, Codeine phosphate was the only thing that worked for me. I tried all those thickening drugs e.g. Imodium, Lomotil, but none of them worked. I tried Cholestyramine on 4 different occasions. At one stage I was taking 6 sachets a day. My output was still up to 30 times a day. Codeine keeps me down to 12/14 (approx) times a day. The unfortunate part of taking Codeine is that it removes it as a painkiller. Codeine and Paracetamole combined together (Panadeine Forte) were a big help to me when I was at work and trying to cope with CD. But now for severe pain I have to rely on a Pethadeine Inj. Although it’s not often and generally only associated with a blockage. Having said that I’m now down to 4 (30mg) tabs a day. Six years ago after my proctocolectomy I was taking 8 tabs a day. My small bowel has taken a long time to "take up" in it’s new role. I’ve got SBS but I gather from my surgeon that I have quite a lot of small bowel left, it’s just that there are several parts that are "cobblestoned" Sorry, I seemed to have got myself side-tracked. But like Mark said Codeine is very good. But when your ileostomy is reversed you will proberly have to start reducing the Codeine. It’s a narcotic and you become addicted. But don’t be too put off by the "a" word. Your Doc should be able to help you by slowly reducing the Codeine. John H(I) "Mark Barber" <mark.bar…@blueyonder.co.uk> wrote in message

news:%fBy7.15594$hK4.2098290@news1.cableinet.net… – Hide quoted text — Show quoted text -> codeine phosphate was what worked for me, it’s a very strong pain killer > that causes constipation in normal circumstances but for you will just > thicken up the output, you will need to get it on prescription though > Mark > www.altsupportostomy.com > "Stephen Gruner" <sgru…@erols.com> wrote in message > news:9qc72o$gh9$1@bob.news.rcn.net… > > Thanks to a dose of rectal cancer, I have a recent ileostomy.  It will be > > reversed once a six-month course of chemotherapy and recovery are both > > complete. > > I have more or less managed to attach a pouch so that it will stay without > > leaking for three or four days.  However, the problem is that the pouch is > > constantly filling up.  Even if I just drink a glass of water, within a > few > > minutes it seems to go straight to the pouch.  I have to empty the pouch > > every couple of hours, and sometimes several times an hour if I try to > sate > > my thirst. > > The oncologist has me on eight imodium a day.  It hasn’t cured the > problem. > > The surgeon suggested a powder called cholestyamine but the insert says > that > > it promotes nausea — I am nauseated most of the time, so I’m afraid to > try > > the powder. > > Any suggestions?  I am at my wit’s end with this. > > Thanks!

Response:

I have an ileostomy and it is supposed to work constantly. The problem ileostomates can have is finding a quiet time to change their pouch. When you eat it stimulates the digestive system. That is normal. If you are having very watery output, you can thicken it by eating bananas, rice, potatoes, etc. If your output is close to the consistency of toothpaste or thick soup this is normal. For several months after surgery you will experience an active stoma with watery output but this does calm down once the small intestine starts to do some of the job your large intestine used to do (absorb fluids). What you are going through sounds normal to me. For those of us that have had surgery due to UC the bathroom trips are very much reduced, but you have had a sudden change to your normal routine with the cancer. Hang in there. I’m sure things are temporary barring any more complications. — Susan R.  VA "Mark Barber" <mark.bar…@blueyonder.co.uk> wrote in message

news:%fBy7.15594$hK4.2098290@news1.cableinet.net… – Hide quoted text — Show quoted text -> codeine phosphate was what worked for me, it’s a very strong pain killer > that causes constipation in normal circumstances but for you will just > thicken up the output, you will need to get it on prescription though > Mark > www.altsupportostomy.com > "Stephen Gruner" <sgru…@erols.com> wrote in message > news:9qc72o$gh9$1@bob.news.rcn.net… > > Thanks to a dose of rectal cancer, I have a recent ileostomy.  It will be > > reversed once a six-month course of chemotherapy and recovery are both > > complete. > > I have more or less managed to attach a pouch so that it will stay without > > leaking for three or four days.  However, the problem is that the pouch is > > constantly filling up.  Even if I just drink a glass of water, within a > few > > minutes it seems to go straight to the pouch.  I have to empty the pouch > > every couple of hours, and sometimes several times an hour if I try to > sate > > my thirst. > > The oncologist has me on eight imodium a day.  It hasn’t cured the > problem. > > The surgeon suggested a powder called cholestyamine but the insert says > that > > it promotes nausea — I am nauseated most of the time, so I’m afraid to > try > > the powder. > > Any suggestions?  I am at my wit’s end with this. > > Thanks!

Response:

Thanks to a dose of rectal cancer, I have a recent ileostomy.  It will be reversed once a six-month course of chemotherapy and recovery are both complete. I have more or less managed to attach a pouch so that it will stay without leaking for three or four days.  However, the problem is that the pouch is constantly filling up.  Even if I just drink a glass of water, within a few minutes it seems to go straight to the pouch.  I have to empty the pouch every couple of hours, and sometimes several times an hour if I try to sate my thirst. The oncologist has me on eight imodium a day.  It hasn’t cured the problem. The surgeon suggested a powder called cholestyamine but the insert says that it promotes nausea — I am nauseated most of the time, so I’m afraid to try the powder. Any suggestions?  I am at my wit’s end with this. Thanks!

Response:

> have to empty the pouch >every couple of hours, and sometimes several times an hour if I try to sate >my thirst.

This is not a specific answer to your question but I know the folks here will be able to help you. This has been discussed before and you will probably find lots of info if you search this newsgrioup at google.com. I have a question for the group…I had a history of IBS and took FiberCon and it worked wonderfully at "regulating" things. This would not work with an ileo as fiber tends to work it’s magic in the colon? Best, Crash

Response:

Stephen Gruner <sgru…@erols.com> wrote in message

news:9qc72o$gh9$1@bob.news.rcn.net… – Hide quoted text — Show quoted text -> Thanks to a dose of rectal cancer, I have a recent ileostomy.  It will be > reversed once a six-month course of chemotherapy and recovery are both > complete. > I have more or less managed to attach a pouch so that it will stay without > leaking for three or four days.  However, the problem is that the pouch is > constantly filling up.  Even if I just drink a glass of water, within a few > minutes it seems to go straight to the pouch.  I have to empty the pouch > every couple of hours, and sometimes several times an hour if I try to sate > my thirst. > The oncologist has me on eight imodium a day.  It hasn’t cured the problem. > The surgeon suggested a powder called cholestyamine but the insert says that > it promotes nausea — I am nauseated most of the time, so I’m afraid to try > the powder. > Any suggestions?  I am at my wit’s end with this. > Thanks!

That’s so tough, Stephen, I’m sorry to hear you’re going through this.  A lot of the posters/lurkers here had cancer also.  You should get a lot of knowing support and advice from them. Because your ileostomy is recent, it doesn’t know it’s acting as your colon, so to speak.  The ileum normally stays active in the body and there is continuous bile and mucous and stuff working in there.  There are better medically correct explanations, however: as soon as the glands in your mouth register that food/drink is present, the rest of your GI tract gets in gear to "digest", which includes the gastric juices working.  (I never use Lifesavers or gum, it makes my body think food is coming in to be digested.) It can be normal to have to empty when you eat or drink something.  It depends how high up they made the ileostomy.  Ostomates with a lot of small intestine left don’t have to empty so often.  And can eat/drink and carry on normally and not worry about where the next bathroom will be.  Maybe yours is set high up in the small intestine, leaving little transit time.  Many of us here have that no-gut or short-bowel syndrome so we empty around the clock. Once your small intestine gets used to being that kind of plumbing it may slow down some for you.  For this six months maybe your drs can prescribe Lomotil or something more effective than Imodium.  If I had a dime for every surgeon who….well, never mind.  Just explain what does and does not work for you.  I don’t know how recent your surgery was but if it’s been in the last month, that nausea isn’t unusual.  Although your drs need to be kept informed. During this time you need all the nutrition and fluids your body can get, so this is hard on you, I know.  And it’s a big bother having to empty the pouch all the time.  There are foods to help slow the process, I’ll find those and list them here today sometime.  Bananas is on that list, but with nausea I found that ANY raw food that required so much digestion added to the nausea.  Try a bite of things as you go, if they work out okay, that’s great. If they don’t, you won’t have much discomfort to get over from a small portion or a bite. If I may, stay away from fiber.  Anything you’d normally think of as fiber is not good, for now. Especially foods that swell in liquid.  Wheat products, GRAINS, raw vegetables, nuts.  I’ll find that list people post here, and websites about foods and other ostomy info. As you probably noticed, you feel worse NOT eating.  You need food/nutrition more now than ever.  (Did you see the Ensure post? Under "Open Wound" thread?) And nothing will drag you down quicker than being dehydrated. Between foods and meds, I hope things settle down for you and the six months race by.  Keep us posted.  There is so much help here. NewzD…@yahoo.NOSPAM.com remove NOSPAM to reply —–=  Posted via Newsfeeds.Com, Uncensored Usenet News  =—– http://www.newsfeeds.com – The #1 Newsgroup Service in the World!  Check out our new Unlimited Server. No Download or Time Limits! —–==  Over 80,000 Newsgroups – 19 Different Servers!  ==—–

Response:

codeine phosphate was what worked for me, it’s a very strong pain killer that causes constipation in normal circumstances but for you will just thicken up the output, you will need to get it on prescription though Mark www.altsupportostomy.com "Stephen Gruner" <sgru…@erols.com> wrote in message

news:9qc72o$gh9$1@bob.news.rcn.net… – Hide quoted text — Show quoted text -> Thanks to a dose of rectal cancer, I have a recent ileostomy.  It will be > reversed once a six-month course of chemotherapy and recovery are both > complete. > I have more or less managed to attach a pouch so that it will stay without > leaking for three or four days.  However, the problem is that the pouch is > constantly filling up.  Even if I just drink a glass of water, within a few > minutes it seems to go straight to the pouch.  I have to empty the pouch > every couple of hours, and sometimes several times an hour if I try to sate > my thirst. > The oncologist has me on eight imodium a day.  It hasn’t cured the problem. > The surgeon suggested a powder called cholestyamine but the insert says that > it promotes nausea — I am nauseated most of the time, so I’m afraid to try > the powder. > Any suggestions?  I am at my wit’s end with this. > Thanks!

Response: