Frustrated with the Dr.s

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Carl_Renee
Carl_Renee Member Posts: 84
edited March 2014 in Colorectal Cancer #1
Hi me again. Ok when Carl was released the first time after surgery he was discharged and told regular diet no modification necessary. Common sense told us some modification and have stayed away from beef, fats, simple carbs etc. His last breakfast before discharged was eggs, bacon and french toast is what was brought. He started slowly after getting home and kept to mostly liquids or soft things as that breakfast he felt was really heavy. By last Saturday he was back in the hospital diarrhea, vomiting and dehydrated as a result released and again told regular diet.

Get out Sunday and started slow again stuck to mostly liquids, lentil or minestrone soups, bouillons etc and gradually increased. This past Friday night had a bland chicken taco salad more salad than anything. Yesterday was informed he needed to increase his fiber to about 25g/day. Today upon release was informed by Dietician the salad probably is causing these obstructions and told to lay off the fiber....so which is contradictory to things to date. She said let her go call the dr. so she understood better what was going on. He apparently told her he had some concerns about Carls gall bladder...first time we heard this!

So now 3 weeks in and we hear radiology not inform us the CT scan did show a small spot on one of the lungs, a few days later find out not from the dr. but the dietician that there is concern over his gall bladder...as you can see we are not off to the best start in all this and feel like we can't trust the drs. the ones we are suppose to be working with for months to come! We do have a 2nd opinion 2 hours away on Monday.

So the point of all my ranting here...WHAT diet are you on or were you on after surgery...was it permn if not how long before you could eat some things w/o fearing any kind of relapse. Right now he is so fearful to eat anything. Everything he has ever known and we did he is now being told no fresh fruits/veggies except banana and avocado. That the fresh ones are too hard on the body for digesting. We don't mind if this is the case but frustrated they couldn't just say that in the beginning.

OH also...night sweats he is having some awful ones...is this the body regulating since surgery or is it something we need to watch?

Thanks in advance,
Renee and Carl

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  • RickMurtagh
    RickMurtagh Member Posts: 587 Member
    #2
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    Low residue
    I was on a low residue diet for about two months after surgery when my ileostomy was created. No seeds, skins, non-soluble fiber or anything even remotely resembling fresh and everything had to be overcooked to mush. Okay, it was not quite that bad, but it seemed so at the time. Chewing thoroughly was stressed. It was low impact on the GI tract, which was good because my insides were acting like they had never seen food before. Pasta worked really well for me.
  • classicman
    classicman Member Posts: 34
    #3
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    After my colon/rectal
    After my colon/rectal surgery i was placed on a lo sodium low residue , limited fiber diet, i couldnot eat raw veges/salads, nothing with skins, or seeds, and limited amounts of beef. and i stayon it for 8 months, i did have an ileostomy ans sported the latest fasionable flange and pouch, and in March 2010, i did the reversal, and basically i still follow the same diet, with some raw foods added as i feel i can handle them, my main problem foods are nuts and tomatoes, snd i really watch the sodium intakeMy dr basically told me to eat what ever i felt i could handle.
  • classicman
    classicman Member Posts: 34
    #4
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    RickMurtagh said:

    Low residue
    I was on a low residue diet for about two months after surgery when my ileostomy was created. No seeds, skins, non-soluble fiber or anything even remotely resembling fresh and everything had to be overcooked to mush. Okay, it was not quite that bad, but it seemed so at the time. Chewing thoroughly was stressed. It was low impact on the GI tract, which was good because my insides were acting like they had never seen food before. Pasta worked really well for me.

    Pasta and rice, banannas,
    Pasta and rice, banannas, and tapioca pudding was my maindiet right after my ileostomy, and i did notice i became somewhat lactose intolerant if i over did any sort of dairy products, besides cottage cheese.
  • geotina
    geotina Member Posts: 2,111 Member
    #5
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    Low Residue
    When George came home from the hospital after his transverse colon resection, we were instructed to do a low residue diet for a short time slowly, slowly, adding in foods. He was never sent home on a liquid diet. He did very well with this and was back to a regular diet in a few months. Maybe your hubby was having problems from going from liquid to too much fiber. With low residue, you stay away from fiber, etc. like other posts have said until the guts get working properly. No raw stuff, any veggies must be thoroughly cooked, no salads. George did not have an ilio/colostomy.

    Tina
  • maglets
    maglets Member Posts: 2,576 Member
    #6
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    geotina said:

    Low Residue
    When George came home from the hospital after his transverse colon resection, we were instructed to do a low residue diet for a short time slowly, slowly, adding in foods. He was never sent home on a liquid diet. He did very well with this and was back to a regular diet in a few months. Maybe your hubby was having problems from going from liquid to too much fiber. With low residue, you stay away from fiber, etc. like other posts have said until the guts get working properly. No raw stuff, any veggies must be thoroughly cooked, no salads. George did not have an ilio/colostomy.

    Tina

    diet
    Renee I found there really was no good advice about diet. I had a large colon surgery and then a massive liver re-section....no one mentioned that my gall bladder was gone. I asked in hospital for diet advice....and when i got home I again I asked to see a dietician.

    Honestly hon none of it really helped. I am not sure if I ever found anyone who knew really what to advise. So come here, try things, research on the net....go to the library and read....sorry but it's the best tip I have....

    I am almost 2 years out after second liver resection and I still have to be super careful about diet,,,I have eliminated all fat from animals...really mostly vegetarian works for me...good luck the pair of you

    mags
  • RickMurtagh
    RickMurtagh Member Posts: 587 Member
    #7
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    classicman said:

    After my colon/rectal
    After my colon/rectal surgery i was placed on a lo sodium low residue , limited fiber diet, i couldnot eat raw veges/salads, nothing with skins, or seeds, and limited amounts of beef. and i stayon it for 8 months, i did have an ileostomy ans sported the latest fasionable flange and pouch, and in March 2010, i did the reversal, and basically i still follow the same diet, with some raw foods added as i feel i can handle them, my main problem foods are nuts and tomatoes, snd i really watch the sodium intakeMy dr basically told me to eat what ever i felt i could handle.

    Eating
    After about a month post takedown, my surgeon stated I could eat whatever I wanted as long as I was willing to live with the consequences!
  • kristasplace
    kristasplace Member Posts: 957 Member
    #8
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    Trial and Error
    Hello Renee and Carl! I agree with Mags. Everyone's body is so different, no "one" diet works for everyone. I learned that i can not tolerate high fiber foods unless i want to be in agonizing pain, stuck in the bathroom all night. The only advise i can give you that may help is to add probiotics to your husbands diet. They have helped me IMMENSELY in times of desperation. I don't know what part of the country you're in, but i think most grocery stores these days sell Kefir. I prefer Kombucha myself, if you can get your hands on that. Even yogurt could help, but the Kefir is higher in probiotics.

    It will be a long learning process to find which foods he will be able to tolerate, and it's difficult to know what's causing what when the diet is so varied. It took me three meals with beans in it to discover they were the culprit in many a late night diarrhea fest.

    Much luck, and many hugs!
    Krista
  • janklo
    janklo Member Posts: 23
    #9
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    lettuce
    My daughter's colon surgeon said lettuce is the worst thing you can eat after a resection. He said that one little tiny piece of lettuce can be the biggest problem for his patients, so I would definitely not eat a salad until further out from surgery and that kind of food can be reintroduced into the diet.
  • HollyID
    HollyID Member Posts: 946 Member
    #10
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    kristasplace said:

    Trial and Error
    Hello Renee and Carl! I agree with Mags. Everyone's body is so different, no "one" diet works for everyone. I learned that i can not tolerate high fiber foods unless i want to be in agonizing pain, stuck in the bathroom all night. The only advise i can give you that may help is to add probiotics to your husbands diet. They have helped me IMMENSELY in times of desperation. I don't know what part of the country you're in, but i think most grocery stores these days sell Kefir. I prefer Kombucha myself, if you can get your hands on that. Even yogurt could help, but the Kefir is higher in probiotics.

    It will be a long learning process to find which foods he will be able to tolerate, and it's difficult to know what's causing what when the diet is so varied. It took me three meals with beans in it to discover they were the culprit in many a late night diarrhea fest.

    Much luck, and many hugs!
    Krista

    Excellent post, Krista
    I too am different, like everyone else, but have noticed that probiotics made the biggest change in the way I feel. My oncologist advised me to eat what I did before. I have changed a bit and am not eating a lot of red meat, but I am eating more fruit and veggies, but sometimes, end up in the bathroom all night. There isn't one thing I can point out that does this to me. There are times I have to do the immodium thing, but not a lot. I use Phillips Colon health for my probiotic. It had many more bacteria that my old one I was using.

    Good luck with your journey. It's an interesting one. :)
  • Carl_Renee
    Carl_Renee Member Posts: 84
    #11
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    thank you
    thank you for the input. would have been nice to have been told this after the first go round.
  • geotina
    geotina Member Posts: 2,111 Member
    #12
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    Carl_Renee said:

    thank you
    thank you for the input. would have been nice to have been told this after the first go round.

    Carl-Renee
    Yep, they should have been more specific with you regarding diet right after surgery. Any questions you have about anything, just post away and someone will be on to tell you their experience. You learn along the way what to ask but just out of the gate when George was diagnosed, I had no idea what to ask and not ask and how to ask questions now I keep a list and ask away, it was a learning process.

    Good luck in this journey - Tina
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #13
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    Diet
    Wow that is a hard one. My doctor told me to eat anything that agreed with me after my reversal surgery and had no restrictions. Nothing really seems to bother me, but still am doing a lot of clustering (going a little at a time). It's really hard to figure out what is going to set one off vs. setting someone else off because we are all different. Just try to introduce foods a little at a time. It will take some time to get back to normal.

    Kim
  • khl8
    khl8 Member Posts: 807
    #14
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    Renee and Carl,
    I don't remember if Carl has a illeostomy or not. But low residue here as well for a while after surgery. Also, I too feared food and this took awhile. Whipped yogurt works well.
    Also, if he seems to be getting down please don't hesitate to call the doc and talk about anti depressents, this helped me feel better and helped my appetite too.
    Kathy

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