TMI.. Maybe.. but I am curious....

dmj101 · June 2012

My cancer was very low in my rectum on the fringe of my anus.. so I wound up with a colostomy... permanent..

Am I alone in this here...

I never hear anyone talk about this... to me the cancer stuff and meds seem easy to deal with though side effects are hard... it is the physical changes that interupted my life.. and was hard to come to terms with.. though I told no one that... but you now....

I attend a support group for the colostomy but they aren't cancer patients so psychologically they don't understand my feelings and the fact that they are all probably 20-25 yrs older than me, retired and don't work and don't really have a care in the world I cannot relate to them.

I always wonder if you others see changes occur regarding their colostomy when doing chemo - and my drs.. seem to not really understand what I am talking about.. Maybe i am alone.. but I don't think so..

I would really like to hear from others that are going through this this way... If you are out there and don't want to chat on board.. please PM me..

Doc_Hawk · June 2012

Not TMI
I think that it's important here to be able to discuss things like this, so no way it's TMI. My primary tumor was even lower, I was putting Preparation H on it, thinking it was an inflamed hemorrhoid. My surgeon told me there was no way I was going to get away without having a colostomy. Being incredibly OCD about washing my hands, the thought of having to clean out and take care of a bag for the rest of my life scared the (pardon the pun) crap out of me. I got lucky and was granted a miracle: radiation knocked that tumor down so far that chemo was able to take are of it and there was no need for surgery.

I know that this doesn't address your main concern, just know that you have my respect for dealing with this as well as you have as well as my support and love.

Doc/Ray

idlehunters · June 2012

Doc_Hawk said:
Not TMI
I think that it's important here to be able to discuss things like this, so no way it's TMI. My primary tumor was even lower, I was putting Preparation H on it, thinking it was an inflamed hemorrhoid. My surgeon told me there was no way I was going to get away without having a colostomy. Being incredibly OCD about washing my hands, the thought of having to clean out and take care of a bag for the rest of my life scared the (pardon the pun) crap out of me. I got lucky and was granted a miracle: radiation knocked that tumor down so far that chemo was able to take are of it and there was no need for surgery.

I know that this doesn't address your main concern, just know that you have my respect for dealing with this as well as you have as well as my support and love.

Doc/Ray

DMJ....
You talk about your "pooper" ANY TIME you feel the need. Me and Doc don't have poopers like yours but we sure don't have a problem talkin bout what we DO have. I am sure the ones like you will join in. This subject has been brought up many times in the past so it will surface again. Take care.

Jennie

steved · June 2012

Stomas
I had a low rectal tumour removed that was just high enough to allow for a reversal to be done after a year with a stoma. I had 6 months chemo during that time and looking back actually found the stoma may have been a bit of a blessing. I had a lot of diarrhoea with the chemo and didn't have to rush to loo in the same way as if I was normally plumbed but still had to empty it a lot. After my reversal I took a long time to settle down to a reasonable (won't say 'normal' as forgotten what that was) bowel hait and at times missed the convenience of the stoma.
Yes, it is a huge adjustment and physically changes your body, needing quite a large psychological adjustment too. But I pushed myself to do that- forced myself to still go swimming and to the beach where my stoma was on display to some degree. Still did a lot of sport and found it was not an impediment for thet. IT took some getting used to between me and my wife physically but again it seemed to become 'normal' in time.
I am constantly amazed what we can ultimately get used to as our 'new normals' inthis process. So many things are different than they were pre-cancer- my body, my mind, my relationships etc. However, the changes don't need to destroy those things and given time the changes simly become the 'new normal' and I seem to forget what it was like before. It takes time though and when the changes are big eg a stoma, it takes even longer. I also perhaps sense that you feel like you are going through these changes feeling very alone and that can make the adaptations even harder. However, there are many here who can understand what you are experiencing and I hope reduce that sense of isolation.

steve

Lovekitties · June 2012

Don't ever hesitate!
Don't ever hesitate to ask about ANYTHING associated with this disease and how it has affected you.

I had a rectal tumor which caused surgery to include removal of rectum and anus, among other things. I too have a perm colostomy.

I guess I fall into the range of being 20 -25 years older than you, am retired, but can't say I don't have a care in the world. I am 65. I am not on chemo.

How would you describe how the physical changes have interrupted your life? Are you having difficulty with the colostomy itself? Are you having issues with intimacy? Is the colostomy keeping you from doing things you want to do?

If you don't mind sharing the particulars, we will try to help or point you to a resource which might.

Hoping we can help you with these feelings.

Hugs,

Marie who loves kitties

dmj101 · June 2012

Lovekitties said:
Don't ever hesitate!
Don't ever hesitate to ask about ANYTHING associated with this disease and how it has affected you.

I had a rectal tumor which caused surgery to include removal of rectum and anus, among other things. I too have a perm colostomy.

I guess I fall into the range of being 20 -25 years older than you, am retired, but can't say I don't have a care in the world. I am 65. I am not on chemo.

How would you describe how the physical changes have interrupted your life? Are you having difficulty with the colostomy itself? Are you having issues with intimacy? Is the colostomy keeping you from doing things you want to do?

If you don't mind sharing the particulars, we will try to help or point you to a resource which might.

Hoping we can help you with these feelings.

Hugs,

Marie who loves kitties

Thanks you all....
I don't really have issues doing things.. I have learned to handle the colostomy.. what I have noticed since I started the Ireotecan the last month is that my stoma is easier to bleed and the initial five days after the infussion it actually seems to be quite a bit I almost thought I was bleeding inside till I noticed if I held the stoma it seemed to cease somewhat.. but of course you cannot constantly hold that baby as eventually you now.. It isn't sore and it doesn't seem inflamed.. but the skin around the stoma is slightly irritated from some leaking but not excessive just more acidic than than normal.
Also I constantly now have very loose stool and nothing i try to tighten it up helps.. and i cannot live on white carbs solely and even that hasn't helped.. the only med the dr tells me to take is immodium and it seems wrong to pop that constantly especially as it seems to have no effect.
I am seeing dr again on tuesday and discuss with her this again.. but I have a trip planned june 22 where I will be flying and i am worried this will turn into full blown diarehea.. oh and did i mention the gas from the irenotecan is almost musical.. so I have sort of sworn off of diary products which I need for protiens since I also had a gastric bypass prior to cancer and diary used to work well for me over other proteins.
It has been a year since my resection.. and i don't really let it stop me from doing anything... though I am constantly aware of it..
Maybe i am worried over nothing..
BTW Marie you are only about 16 years older than me..I know everyone has something they worry about so I really wasn't slighting anyone older than me.. sorry.. I have a brother your age..I don't consider him old at all.. but he won't talk to me about my condition as it means coming to term with his own mortality and he lives for today and always has.

Lovekitties · June 2012

dmj101 said:
Thanks you all....
I don't really have issues doing things.. I have learned to handle the colostomy.. what I have noticed since I started the Ireotecan the last month is that my stoma is easier to bleed and the initial five days after the infussion it actually seems to be quite a bit I almost thought I was bleeding inside till I noticed if I held the stoma it seemed to cease somewhat.. but of course you cannot constantly hold that baby as eventually you now.. It isn't sore and it doesn't seem inflamed.. but the skin around the stoma is slightly irritated from some leaking but not excessive just more acidic than than normal.
Also I constantly now have very loose stool and nothing i try to tighten it up helps.. and i cannot live on white carbs solely and even that hasn't helped.. the only med the dr tells me to take is immodium and it seems wrong to pop that constantly especially as it seems to have no effect.
I am seeing dr again on tuesday and discuss with her this again.. but I have a trip planned june 22 where I will be flying and i am worried this will turn into full blown diarehea.. oh and did i mention the gas from the irenotecan is almost musical.. so I have sort of sworn off of diary products which I need for protiens since I also had a gastric bypass prior to cancer and diary used to work well for me over other proteins.
It has been a year since my resection.. and i don't really let it stop me from doing anything... though I am constantly aware of it..
Maybe i am worried over nothing..
BTW Marie you are only about 16 years older than me..I know everyone has something they worry about so I really wasn't slighting anyone older than me.. sorry.. I have a brother your age..I don't consider him old at all.. but he won't talk to me about my condition as it means coming to term with his own mortality and he lives for today and always has.

No slight taken
Have you talked to an Ostomy nurse about your stoma bleeding? He/she may have some suggestions.

Something you might try for the skin around the stoma...it is called karaya powder. I use it when changing the appliance and after cleaning. It can be used both to help prevent weeping skin as well as on weeping skin. It has helped me to keep the surrounding skin in good health.

Some here have mentioned that their doc has said they can up the immodium well over recommended dosage. Perhaps you can ask your doc about upping the dosage to see if it helps.

Also, have you tried any probiotics? Some have also had success with them.

Another option instead of dairy might be to try coconut milk...again some have had success with this for diarehea. Soy milk wouuld also be a good protein substitute.

Hope that you have an easy flight with no issues.

Marie who loves kitties

tootsie1 · June 2012

Hi
I do not have a colostomy, so I can't speak to that, but I would offer a bit of advice. Please don't think you can't learn from or relate to others who are not exactly your same age. Even much older or much younger people have lots to offer, and everyone has their set of cares and woes.

*hugs*
Gail

dmj101 · June 2012

tootsie1 said:
Hi
I do not have a colostomy, so I can't speak to that, but I would offer a bit of advice. Please don't think you can't learn from or relate to others who are not exactly your same age. Even much older or much younger people have lots to offer, and everyone has their set of cares and woes.

*hugs*
Gail

I wasn't saying that.. at
I wasn't saying that.. at all..
the actual issue is that they cannot relate to me either..

dmj101 · June 2012

Lovekitties said:
No slight taken
Have you talked to an Ostomy nurse about your stoma bleeding? He/she may have some suggestions.

Something you might try for the skin around the stoma...it is called karaya powder. I use it when changing the appliance and after cleaning. It can be used both to help prevent weeping skin as well as on weeping skin. It has helped me to keep the surrounding skin in good health.

Some here have mentioned that their doc has said they can up the immodium well over recommended dosage. Perhaps you can ask your doc about upping the dosage to see if it helps.

Also, have you tried any probiotics? Some have also had success with them.

Another option instead of dairy might be to try coconut milk...again some have had success with this for diarehea. Soy milk wouuld also be a good protein substitute.

Hope that you have an easy flight with no issues.

Marie who loves kitties

alternatives.
I cannot do soy milk as it interferes with thyroid med.. I have tried coconut and it gave me diarehe.... but lactaid and cheese and yogurt are usually my friend till now...

The wound nurse a the hospital speaks at decible so loud they can hear her in Uraguay that I told her to leave me alone..

I had upped the immodium but it is makimg no difference.. which is why i am concerned..

I do have a stoma powder I use and yes it helps..

But as I said these are changes that have occurred in just the last month since starting Folfiri so I am concerned it will escallated as I get further into the treatment plan...

I just don't like having a plan in place..

tommycat · June 2012

dmj101 said:
Thanks you all....
I don't really have issues doing things.. I have learned to handle the colostomy.. what I have noticed since I started the Ireotecan the last month is that my stoma is easier to bleed and the initial five days after the infussion it actually seems to be quite a bit I almost thought I was bleeding inside till I noticed if I held the stoma it seemed to cease somewhat.. but of course you cannot constantly hold that baby as eventually you now.. It isn't sore and it doesn't seem inflamed.. but the skin around the stoma is slightly irritated from some leaking but not excessive just more acidic than than normal.
Also I constantly now have very loose stool and nothing i try to tighten it up helps.. and i cannot live on white carbs solely and even that hasn't helped.. the only med the dr tells me to take is immodium and it seems wrong to pop that constantly especially as it seems to have no effect.
I am seeing dr again on tuesday and discuss with her this again.. but I have a trip planned june 22 where I will be flying and i am worried this will turn into full blown diarehea.. oh and did i mention the gas from the irenotecan is almost musical.. so I have sort of sworn off of diary products which I need for protiens since I also had a gastric bypass prior to cancer and diary used to work well for me over other proteins.
It has been a year since my resection.. and i don't really let it stop me from doing anything... though I am constantly aware of it..
Maybe i am worried over nothing..
BTW Marie you are only about 16 years older than me..I know everyone has something they worry about so I really wasn't slighting anyone older than me.. sorry.. I have a brother your age..I don't consider him old at all.. but he won't talk to me about my condition as it means coming to term with his own mortality and he lives for today and always has.

When I had my ileostomy,
When I had my ileostomy, after I got out of the shower I would press some paper towels on my stoma to get it very dry and curb any leaks.
Then, I would take my blow dryer and put it on "cool" and dry the abdominal area before putting on the seal.
It really helped stopping the burning skin problem.
This is all I have to offer i.e colostomy, but it helped me~
Tommycat

Varmint5 · June 2012

dmj101 said:
I wasn't saying that.. at
I wasn't saying that.. at all..
the actual issue is that they cannot relate to me either..

Folfiri
My daughter is on Folfiri and in the beginning had terrible diarrhea but it has lessened now and isn't as bad. She started taking Culturelle some time back. We don't know if it really helps anything, but can't hurt. She was taking up to 12 Imodium a day.

Could it be that the diarrhea is inflaming your stoma and making it bleed? There is a good ostomy web site: www.c3life.com . You might get more information there. Everybody there has a stoma. Good luck with this.

Sandy

Helen321 · June 2012

dmj101 said:
alternatives.
I cannot do soy milk as it interferes with thyroid med.. I have tried coconut and it gave me diarehe.... but lactaid and cheese and yogurt are usually my friend till now...

The wound nurse a the hospital speaks at decible so loud they can hear her in Uraguay that I told her to leave me alone..

I had upped the immodium but it is makimg no difference.. which is why i am concerned..

I do have a stoma powder I use and yes it helps..

But as I said these are changes that have occurred in just the last month since starting Folfiri so I am concerned it will escallated as I get further into the treatment plan...

I just don't like having a plan in place..

Obviously I'm too new at
Obviously I'm too new at this to even consider chiming in, I clicked on it for the TMI part, I thought that was funny as I've posted that I'm bleeding profusely, having BMs every two hours, and having gas. lol Sorry for laughing but let's face it, I'm 42 discussing my bowel movements with people I just "met". On that end, modesty is going right out the window for me! Today 5 people looked into my butt at once and I got a front seat view with the camera, table, cheeks, entry and inside. Yeah camera! He could have turned it on when he got in there. I'm responding to this mostly because I also have a thyroid disorder and recently switched my diet. I gave up dairy and switched to almond milk with no sugar added and I added brocolli sprouts which are supposed to be a great cancer fighter. Downside, they can severely affect your thyroid, cause swelling. I called my endocronologist when I read that and he said you don't change your foods to accomodate your medication, you adjust your medication to accomodate your new food issues. You fight the cancer with the foods and you make your thyroid work still. Also what time of the day you drink and when you take your thyroid meds has to be timed. So as with cows milk, you can't drink it before you take your medication. So I'm eating the foods for a month and then having my thyroid levels tested and adjusting my synthroid accordingly. Then I'll go back in a few months and have them tested again. If I have any swelling, I'm supposed to stop. So you may be able to do the soy milk or almond milk without sugar if you're allowed almonds after checking with your endocronologist.

danker · June 2012

dmj101 said:
Thanks you all....
I don't really have issues doing things.. I have learned to handle the colostomy.. what I have noticed since I started the Ireotecan the last month is that my stoma is easier to bleed and the initial five days after the infussion it actually seems to be quite a bit I almost thought I was bleeding inside till I noticed if I held the stoma it seemed to cease somewhat.. but of course you cannot constantly hold that baby as eventually you now.. It isn't sore and it doesn't seem inflamed.. but the skin around the stoma is slightly irritated from some leaking but not excessive just more acidic than than normal.
Also I constantly now have very loose stool and nothing i try to tighten it up helps.. and i cannot live on white carbs solely and even that hasn't helped.. the only med the dr tells me to take is immodium and it seems wrong to pop that constantly especially as it seems to have no effect.
I am seeing dr again on tuesday and discuss with her this again.. but I have a trip planned june 22 where I will be flying and i am worried this will turn into full blown diarehea.. oh and did i mention the gas from the irenotecan is almost musical.. so I have sort of sworn off of diary products which I need for protiens since I also had a gastric bypass prior to cancer and diary used to work well for me over other proteins.
It has been a year since my resection.. and i don't really let it stop me from doing anything... though I am constantly aware of it..
Maybe i am worried over nothing..
BTW Marie you are only about 16 years older than me..I know everyone has something they worry about so I really wasn't slighting anyone older than me.. sorry.. I have a brother your age..I don't consider him old at all.. but he won't talk to me about my condition as it means coming to term with his own mortality and he lives for today and always has.

dmj101
Ask your doc for LOMOTIL It is stronger than imodium and has worked well for me in controlling diarrhea. A friend with a colostomy
for the last six years says it is easier to live with than an ileostomy.. LOL

dmj101 · June 2012

Helen321 said:
Obviously I'm too new at
Obviously I'm too new at this to even consider chiming in, I clicked on it for the TMI part, I thought that was funny as I've posted that I'm bleeding profusely, having BMs every two hours, and having gas. lol Sorry for laughing but let's face it, I'm 42 discussing my bowel movements with people I just "met". On that end, modesty is going right out the window for me! Today 5 people looked into my butt at once and I got a front seat view with the camera, table, cheeks, entry and inside. Yeah camera! He could have turned it on when he got in there. I'm responding to this mostly because I also have a thyroid disorder and recently switched my diet. I gave up dairy and switched to almond milk with no sugar added and I added brocolli sprouts which are supposed to be a great cancer fighter. Downside, they can severely affect your thyroid, cause swelling. I called my endocronologist when I read that and he said you don't change your foods to accomodate your medication, you adjust your medication to accomodate your new food issues. You fight the cancer with the foods and you make your thyroid work still. Also what time of the day you drink and when you take your thyroid meds has to be timed. So as with cows milk, you can't drink it before you take your medication. So I'm eating the foods for a month and then having my thyroid levels tested and adjusting my synthroid accordingly. Then I'll go back in a few months and have them tested again. If I have any swelling, I'm supposed to stop. So you may be able to do the soy milk or almond milk without sugar if you're allowed almonds after checking with your endocronologist.

Hi Helen,
I have to say I
Hi Helen,

I have to say I disagree with your doc..
I have been on thyroid meds since 2007 due to thyroid cancer..
I had the hardest time getting the correct dosage.. possibly because I don't absorb it well due to gastric bypass.. but when taking thyroid med you have to be very careful too much or too little will make you feel really lousy..
I have found soy at any time of the day confuses the med.. cow milk i tollerate well with lactaid.. nut milks give me diarahea..
you need to take thyroid med on an empty stomach.. and no soy or walnuts for at least 3-4 hrs as well as no other meds.
I learned thru trial and error..
I eat about 30 minutes after the med and some will say you should wait 1 hr.. we are all different..
But once my colon was replumbed.. it all changed regarding how and when and what I ate..
I rarely eat nuts and dairy I have to watch.. those nut milks are completely out. and what I miss the most is fruits and vegetable.. I have really watch which I each, how they are prepared and the volume..
I can do berries and banana's, but apples wil constipate me for 2 days.. I can do most salad.. no pineapple or grapes..
before I started folfiri.. dairy was managable.. not now i get scared by it..
irenotecan casuse gas so brocolli is a no most of the time and I have a whole freezer of brocoli,,. also potatoes that I was using to tighten bowel movement is not digesting the way it used to.. so that isn't working.. hard to find a happy medium any longer..
Not feelin any uncomforable distress and it appears I am digesting somethings but they are exiting a lot quicker now than they were just 4 weeks ago..
Someone mention Culterelle so I bought that today and will try that.. maybe that will have some effect. but I also read about irenotecan and it messes with the enzymes in the intestines so.. that is probably what i am experiencing. but will this get worse.. I don't know.and I really don't know how this will effect my colostomy.. I have no intestinal issue with Folfox .. but the neuropathy is a sorryfull side effect I never realized could be so devistating..
I have some how remained calm about this but it is really starting to get to me as it is interfering in what and when I eat and where I go.. as I really don't want to have a gass or diarehea bout somewhere I am not comfortable. and god forbid be with someone who doesn't get it.. I mean I was at a wake about a month ago and I went to the ladies room and 2 people came into check on me.. because they thought I was gone too long.. but with the colostomy if it needs changing I can't just rip it off and go.. especially depending on what you are whering. and that day.. I was really trying to keep my outfit nice... so sometime it gets me annoyed.. i mean they meant well.. but god forbid I touch my side because the colostomy starts talking and I am trying to muffle it.. some of my friends right away say are you ok.. there intentions are good.. but there concerns make me more conscieous and a little awkward feeling.

dmj101 · June 2012

Varmint5 said:
Folfiri
My daughter is on Folfiri and in the beginning had terrible diarrhea but it has lessened now and isn't as bad. She started taking Culturelle some time back. We don't know if it really helps anything, but can't hurt. She was taking up to 12 Imodium a day.

Could it be that the diarrhea is inflaming your stoma and making it bleed? There is a good ostomy web site: www.c3life.com . You might get more information there. Everybody there has a stoma. Good luck with this.

Sandy

cutlerelle
I am going to try this..

I didn't care for that site.. I have been on it.. I can't post there for somereason and I have had my account reset and even created a new account.. it won't work from this computer or my work computer that I just stopped going there..

dmj101 · June 2012

Varmint5 said:
Folfiri
My daughter is on Folfiri and in the beginning had terrible diarrhea but it has lessened now and isn't as bad. She started taking Culturelle some time back. We don't know if it really helps anything, but can't hurt. She was taking up to 12 Imodium a day.

Could it be that the diarrhea is inflaming your stoma and making it bleed? There is a good ostomy web site: www.c3life.com . You might get more information there. Everybody there has a stoma. Good luck with this.

Sandy

cutlerelle
I am going to try this..

I didn't care for that site.. I have been on it.. I can't post there for somereason and I have had my account reset and even created a new account.. it won't work from this computer or my work computer that I just stopped going there..

dmj101 · June 2012

danker said:
dmj101
Ask your doc for LOMOTIL It is stronger than imodium and has worked well for me in controlling diarrhea. A friend with a colostomy
for the last six years says it is easier to live with than an ileostomy.. LOL

I will ask for that...
I will ask for that... thanks

Doc_Hawk · June 2012

dmj101 said:
I will ask for that...
I will ask for that... thanks

Lomtil and Shakespeare
My doc says to alternate between lomitl and immodium. For me, lomitl only is the best route and it works faster than when I alternate. The last time I tried to alternate was about three months ago when I was staying with my on-again-off-again lady friend in Arizona. I spent about two or three hours having what I call a "Shakespeare evening". I'd jump up and head for the bathroom saying "Once more unto the breach!" where it was "Much Ado About Nothing" (or very little anyway) until finally after three doses of two lomitl it was "All's Well That Ends Well."

Helen321 · June 2012

dmj101 said:
Hi Helen,
I have to say I
Hi Helen,

I have to say I disagree with your doc..
I have been on thyroid meds since 2007 due to thyroid cancer..
I had the hardest time getting the correct dosage.. possibly because I don't absorb it well due to gastric bypass.. but when taking thyroid med you have to be very careful too much or too little will make you feel really lousy..
I have found soy at any time of the day confuses the med.. cow milk i tollerate well with lactaid.. nut milks give me diarahea..
you need to take thyroid med on an empty stomach.. and no soy or walnuts for at least 3-4 hrs as well as no other meds.
I learned thru trial and error..
I eat about 30 minutes after the med and some will say you should wait 1 hr.. we are all different..
But once my colon was replumbed.. it all changed regarding how and when and what I ate..
I rarely eat nuts and dairy I have to watch.. those nut milks are completely out. and what I miss the most is fruits and vegetable.. I have really watch which I each, how they are prepared and the volume..
I can do berries and banana's, but apples wil constipate me for 2 days.. I can do most salad.. no pineapple or grapes..
before I started folfiri.. dairy was managable.. not now i get scared by it..
irenotecan casuse gas so brocolli is a no most of the time and I have a whole freezer of brocoli,,. also potatoes that I was using to tighten bowel movement is not digesting the way it used to.. so that isn't working.. hard to find a happy medium any longer..
Not feelin any uncomforable distress and it appears I am digesting somethings but they are exiting a lot quicker now than they were just 4 weeks ago..
Someone mention Culterelle so I bought that today and will try that.. maybe that will have some effect. but I also read about irenotecan and it messes with the enzymes in the intestines so.. that is probably what i am experiencing. but will this get worse.. I don't know.and I really don't know how this will effect my colostomy.. I have no intestinal issue with Folfox .. but the neuropathy is a sorryfull side effect I never realized could be so devistating..
I have some how remained calm about this but it is really starting to get to me as it is interfering in what and when I eat and where I go.. as I really don't want to have a gass or diarehea bout somewhere I am not comfortable. and god forbid be with someone who doesn't get it.. I mean I was at a wake about a month ago and I went to the ladies room and 2 people came into check on me.. because they thought I was gone too long.. but with the colostomy if it needs changing I can't just rip it off and go.. especially depending on what you are whering. and that day.. I was really trying to keep my outfit nice... so sometime it gets me annoyed.. i mean they meant well.. but god forbid I touch my side because the colostomy starts talking and I am trying to muffle it.. some of my friends right away say are you ok.. there intentions are good.. but there concerns make me more conscieous and a little awkward feeling.

I have several friends that
I have several friends that have asked me every day how I am. have politely been saying okay enough but to my real friends I've been saying zip it! Everyone is catching on except one person so I've stopped responding to her, I go right to another subject, don't pick up her calls, don't respond to her texts. My family was loving me to death so I told them that they don't have to worry about cancer because I'm being loved to death. They've finally stopped saying it. I'm willing to call your friends and tell them to back off along with mine! I'm feeling the power, I can be your polite backoff already sidekick.

All those food changes must be very hard. I've changed just the basics and I'm feeling sluggish. Trying to tweak it all so I've decided to see a nutritionist. Giving up sugar has been hard and I'm trying to find replacement energy. I'm going to talk to the medical oncologist about the synthroid, hopefully he'll be more knowledgable. I've always taken my synthroid at night on a semi full stomach so I must absorb it well. I'm sorry you can't eat so many things. Good that you can still do cow's milk. How do you make sure you are getting enough nutrition and vitamins?

dmj101 · June 2012

Helen321 said:
I have several friends that
I have several friends that have asked me every day how I am. have politely been saying okay enough but to my real friends I've been saying zip it! Everyone is catching on except one person so I've stopped responding to her, I go right to another subject, don't pick up her calls, don't respond to her texts. My family was loving me to death so I told them that they don't have to worry about cancer because I'm being loved to death. They've finally stopped saying it. I'm willing to call your friends and tell them to back off along with mine! I'm feeling the power, I can be your polite backoff already sidekick.

All those food changes must be very hard. I've changed just the basics and I'm feeling sluggish. Trying to tweak it all so I've decided to see a nutritionist. Giving up sugar has been hard and I'm trying to find replacement energy. I'm going to talk to the medical oncologist about the synthroid, hopefully he'll be more knowledgable. I've always taken my synthroid at night on a semi full stomach so I must absorb it well. I'm sorry you can't eat so many things. Good that you can still do cow's milk. How do you make sure you are getting enough nutrition and vitamins?

Diet,, Diet, Diet
Don't be surprised if you med onc knows very little about syntroid..
With thyroid cancer they give alot of synthroid to surpress the human TSH.. whem my original onc saw how low my TSH was it was .5 she was sending it to my endo to correct that.. I had to educate her and tell her it was supposed to be as close to 0 as I can get it.. as we don't want any TSH as that might be cancerous... she had no clue...

Diet is how I get nutrient ... and some supplements.. I take iron , vit D and Vit B 12, and occassionally I will do a protien suppliment if I feel sluggish.. but I try to eat a balamce of foods... grains, berrie, chicken, fish, beef, tomatoes(at least once a day), I do some veggies( just have to live with the gass and bloating as you need some for fiber and others for vitamins and mineral)

I am a coffee fiend.. I must have coffee everyday.. and for sugar I use stevia or splenda..to kick the sweetness needs. and chocolate..

I have had no luck with nutritionists.. I am a special case and none that I met are able to see ourside the box.

I think my friends are starting to catch on but its taken a year for them to understand I will let them know when I am in distress.. and that I don't need to be coddled..
and the funny thing is my family won't see me.. all I am going thru scares them too much... though I perfer to think of that as their weakness and personality flaw as I good never just ignore a family member and what they are going thru..

TMI.. Maybe.. but I am curious....

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