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Weight loss-no appetite-not drinking fluids-night sweats and chills

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Fri Feb 12, 2021 12:59 pm

Joe.... this concerns me very much . As an ileostomy person , our foods come out quickly as does our liquids. The only thing since your having many issues ...is to only take care of you this time . Only producing gas is not a good thing . Are you vomiting when you eat or drink ? I had found when I lost 40 lbs while I was recooperating and wouldn't eat or drink was to constantly nibble on saltines and drink only water. I mean nibble, not eat too much . Our bodies need to heal internally and without food and drink they are lost. Even with snow, you need to get back to the dr ASAP. Do you still have your visiting nurse that has training with an Ostomate ? 
please stay strong ...things will improve , you just need know, healing takes time . 
ritz....

Fri Feb 12, 2021 1:58 pm
JoeCal1952 wrote:




Joe,

Hydration is ESSENTIAL.  You must drink fluids regularly.  Water, Ensure, broth, soups, anything...  It's possible that your depression, lack of energy are due - in large part - to dehydration.

If you don't hydrate, you will end up in the hospital on an I.V. drip.  Neither are good if you can avoid it, but will be necessary if you don't act NOW.

I agree with Puppy & Ritz:  you also need to eat.  At this point, anything that sounds good.  If nothing sounds good, then force yourself to consume SOMETHING...anything. 

You say your wife is in the healthcare field, and is in contact with your physicians, is fully informed?  Well, YOU need to tell her of your condition, how you're feeling, physically, mentally, emotionally.  Groceries need to be purchased and brought home.  Food needs to be prepared.  A medical health professional - your GP, your psychiatrist - should be contacted.  And the earth will still be spinning if some of the chores are done later. 

If your wife is unable, unwilling to get food into your home and prepare it, contact your county's Senior Services division/office.  They have resources to assist.  Your situation sounds dire, so do it now, Joe.

Lily17~ 

Fri Feb 12, 2021 2:55 pm
Ritz wrote:

Joe.... this concerns me very much . As an ileostomy person , our foods come out quickly as does our liquids. The only thing since your having many issues ...is to only take care of you this time . Only producing gas is not a good thing . Are you vomiting when you eat or drink ? I had found when I lost 40 lbs while I was recooperating and wouldn't eat or drink was to constantly nibble on saltines and drink only water. I mean nibble, not eat too much . Our bodies need to heal internally and without food and drink they are lost. Even with snow, you need to get back to the dr ASAP. Do you still have your visiting nurse that has training with an Ostomate ? 
please stay strong ...things will improve , you just need know, healing takes time . 
ritz....


I don't have a nurse any more. I just lay here all day. It hurts to walk. Seems I developed pain on my bottom on the cheeks, not the incision and it has me concerned

Fri Feb 12, 2021 2:57 pm
Ritz wrote:

Joe.... this concerns me very much . As an ileostomy person , our foods come out quickly as does our liquids. The only thing since your having many issues ...is to only take care of you this time . Only producing gas is not a good thing . Are you vomiting when you eat or drink ? I had found when I lost 40 lbs while I was recooperating and wouldn't eat or drink was to constantly nibble on saltines and drink only water. I mean nibble, not eat too much . Our bodies need to heal internally and without food and drink they are lost. Even with snow, you need to get back to the dr ASAP. Do you still have your visiting nurse that has training with an Ostomate ? 
please stay strong ...things will improve , you just need know, healing takes time . 
ritz....


No vomit at all. Just no desire to eat

Fri Feb 12, 2021 3:04 pm
Lily17 wrote:


Joe,

Hydration is ESSENTIAL.  You must drink fluids regularly.  Water, Ensure, broth, soups, anything...  It's possible that your depression, lack of energy are due - in large part - to dehydration.

If you don't hydrate, you will end up in the hospital on an I.V. drip.  Neither are good if you can avoid it, but will be necessary if you don't act NOW.

I agree with Puppy & Ritz:  you also need to eat.  At this point, anything that sounds good.  If nothing sounds good, then force yourself to consume SOMETHING...anything. 

You say your wife is in the healthcare field, and is in contact with your physicians, is fully informed?  Well, YOU need to tell her of your condition, how you're feeling, physically, mentally, emotionally.  Groceries need to be purchased and brought home.  Food needs to be prepared.  A medical health professional - your GP, your psychiatrist - should be contacted.  And the earth will still be spinning if some of the chores are done later. 

If your wife is unable, unwilling to get food into your home and prepare it, contact your county's Senior Services division/office.  They have resources to assist.  Your situation sounds dire, so do it now, Joe.

Lily17~ 

 

M y wife works for the hospital that treated me and now they are threatenening to fire her because she took time off to care for me.

The hos spiral kicked me out Adweek before time because of the riding vivid numbers so she had to be with me. I think that's why I am depressed. She loses her job, we lose everything.

Fri Feb 12, 2021 4:23 pm
JoeCal1952 wrote:



Joe,

Read this very carefully:  contact your doctor, NOW.

From what I am reading in your responses today, you are not comprehending the advice you are being given... or the seriousness of how ill you truly are.

Call your doctor now.  Or, call 911.  You need help.  You need to help yourself.  Do it NOW.

Lily17~

Fri Feb 12, 2021 4:59 pm
Lily17 wrote:

Joe,

Read this very carefully:  contact your doctor, NOW.

From what I am reading in your responses today, you are not comprehending the advice you are being given... or the seriousness of how ill you truly are.

Call your doctor now.  Or, call 911.  You need help.  You need to help yourself.  Do it NOW.

Lily17~

 

I contacted Myra already...no response. We are buried in snow here and many people stayed home. I comprehend very well. I have pain which prevents me from walking a lot. The pain isn't from the incision. It is the cheeks of my butt. I am doing what I can.

Thanks

Fri Feb 12, 2021 5:31 pm
JoeCal1952 wrote:




Joe please call 800-273-8255 ASAP .. it is a National help line . Maybe they can help.

Fri Feb 12, 2021 9:00 pm
JoeCal1952 wrote:




Joe ..l could not sit for months normally . I know it hurts , it's the worst . Try sitting on the side of your but bone and with your hands squeeze the biputt crack closed . I stuffed a soft pillow to keep me from falling . I had to sleep on my side on the sofa for 4 months . It will get better ...it just takes much time . You'll find a comfortable way . Me being in a vehicle I sat on the bone on a thick fluffy pillow for 6 months . It really does take a long time , but you'll be happy that part of the surgery is done . I love that my butt was done at the same time the ileostomy was done and closing my internal empty cavity ( guys don't have that part ) . Baby steps my friend...baby steps

Sun Feb 14, 2021 2:25 pm

Joe, Please let us know if you saw a doctor or the ER we are all worried about you and let us know how it went please. 

Sun Feb 14, 2021 2:34 pm
cmannine wrote:

Joe, Please let us know if you saw a doctor or the ER we are all worried about you and let us know how it went please. 


Yes Joe .... please let us know how you are today ? 

Tue Feb 16, 2021 12:37 pm

Joe,

Just checking in on you:  How are you getting along?  Inquiring minds want to know...  : )

Lily17~

Tue Feb 16, 2021 12:52 pm
Lily17 wrote:

Joe,

Just checking in on you:  How are you getting along?  Inquiring minds want to know...  : )

Lily17~

Hi Lily. I didn't forget y'all. My daughter brought over some gator ade and smart water and I have been drinking that but eating light. I feel ok and I have been walking around the house and lifting light 2.5 lb. Weights to help strengthen my forearms. 2 days ago wasn't so good. The stoma put out 5 times during the night and 5 more after I got out of bed. Not fun.Today I think I messed up a bit. I had some English muffins but craved orange marmalade. My body can't take oranges and now I feel sick. Can't get water down let alone lunch. All in all I feel better. Thanks for asking



Tue Feb 16, 2021 6:44 pm
JoeCal1952 wrote:




Joe,

Thank you for letting us know that you're still on this side of the turf!  It's wonderful news, and I know I was worried for you.

Also great that your daughter is nearby and brought over hydrating fluids.

It sounds like you may have had a bit of a blockage before you went to bed that finally broke free to pass into your pouch overnight?

Keep up the hydration, and I suggest avoiding those orange-products.  ; ) 

One day at a time, Joe.  Continue to make sensible, needed choices on your diet, fluids, activities, and medical care, and let us know how you're doing, all right?  Even if you just want to "talk".  : )

Lily17~

 

Wed Feb 17, 2021 7:02 am
Lily17 wrote:


Joe,

Thank you for letting us know that you're still on this side of the turf!  It's wonderful news, and I know I was worried for you.

Also great that your daughter is nearby and brought over hydrating fluids.

It sounds like you may have had a bit of a blockage before you went to bed that finally broke free to pass into your pouch overnight?

Keep up the hydration, and I suggest avoiding those orange-products.  ; ) 

One day at a time, Joe.  Continue to make sensible, needed choices on your diet, fluids, activities, and medical care, and let us know how you're doing, all right?  Even if you just want to "talk".  : )

Lily1

Thanks Lily,

I am currently working with my PCP and oncologist and also a nutritionist real soon. Trying to figure out a way to get me to clinic for another blood work up.

I will be ok but I need to know why I wake up nauseous.

Also, when I was in the hospital they prescribed me Flomax.  to help with urination. I am down to 1 pill and I don't know if I am supposed to stay on it. The Dr. Was a resident so I asked my PCP TO fill it and I wrote to my surgeon asking if I need to remain on it.

You have been a huge help to me so please don't go away. If I am not around for awhile I am probably busy working on taxes or something

 Joe



Thu Feb 18, 2021 2:25 pm
JoeCal1952 wrote:




Hi, Joe~

You're sounding better, emotionally, mentally.

Keep up the hydration as it's crucial.  I can not overstate this fact.

With the pain in your backside, and the nausea, along with possible depression, you need to see your surgeon and/or primary care physician.

I know there's another hard winter storm bearing down on your region, but reach out to your medical professionals NOW to see what your care options are.  Don't presume anything: "Oh, well...  I shouldn't call because they/there might be...(???)."  They may have ways to meet with you and options for your care that you and/or your wife have not considered.

Be wise.  Be well.

Lily17~

Thu Feb 18, 2021 2:48 pm
Lily17 wrote:


Hi, Joe~

You're sounding better, emotionally, mentally.

Keep up the hydration as it's crucial.  I can not overstate this fact.

With the pain in your backside, and the nausea, along with possible depression, you need to see your surgeon and/or primary care physician.

I know there's another hard winter storm bearing down on your region, but reach out to your medical professionals NOW to see what your care options are.  Don't presume anything: "Oh, well...  I shouldn't call because they/there might be...(???)."  They may have ways to meet with you and options for your care that you and/or your wife have not considered.

Be wise.  Be well.

Lily17~

My surgeon called me today because she was concerned more about the nausea and constipation than she was about the pain. However, she is setting up an appointment next week to take a look, draw blood, and see what's going on. She is hoping there is no blockage but I do have gas passing so I think I am just constipated. I moving fast on this so if anything is going on, we have it early..

Take care and I will update you here

Joe

 

 

 



Thu Feb 18, 2021 3:11 pm
JoeCal1952 wrote:




Joe,

You may very well have a blockage.

Consider taking the following steps, taking your own personal health into account.  Don't just do these because I "recommend" them, okay?

Now, with a blockage, you may find that your GI tract rejects anything you sip or eat, which can spur the nausea and/or induce vomiting.  (If it can't go through, it has to go back up, right?)

Stay hydrated, but also sip on a cola beverage.  I recommend Coca-Cola:  the acid in it can help break down a blockage.

Sipping on warm peppermint tea can help settle the stomach. 

If you have a heating pad or hot water bottle, warm it up - but not too hot.  Place a towel over your abdomen, then the heating pad/water bottle on top of it so you don't burn your skin or stoma, and a blanket over all that to help retain the heat.  This heat can help relax the GI tract and the abdomenal muscles associated with it, perhaps allowing the blockage to move on.

Try walking around a bit:  gravity is often helpful in moving the contents of the GI tract through it.

Lily17~

Thu Feb 18, 2021 3:51 pm
Lily17 wrote:


Joe,

You may very well have a blockage.

Consider taking the following steps, taking your own personal health into account.  Don't just do these because I "recommend" them, okay?

Now, with a blockage, you may find that your GI tract rejects anything you sip or eat, which can spur the nausea and/or induce vomiting.  (If it can't go through, it has to go back up, right?)

Stay hydrated, but also sip on a cola beverage.  I recommend Coca-Cola:  the acid in it can help break down a blockage.

Sipping on warm peppermint tea can help settle the stomach. 

If you have a heating pad or hot water bottle, warm it up - but not too hot.  Place a towel over your abdomen, then the heating pad/water bottle on top of it so you don't burn your skin or stoma, and a blanket over all that to help retain the heat.  This heat can help relax the GI tract and the abdomenal muscles associated with it, perhaps allowing the blockage to move on.

Try walking around a bit:  gravity is often helpful in moving the contents of the GI tract through it.

Lily17~

Thanks for those tips. I have a heating pad and cola.ill update you

Joe



Thu Feb 18, 2021 7:09 pm
JoeCal1952 wrote:




Hang in there Joe. Good to know that you are drinking and moving around. I feel your pain my main thing is the sensitive skin right around the stoma and the skin tears don't know how they got there. But I also feel cerain burning pains when I eat different foods or the bag comes loose. My surgeon gave me medical cannabis so I went to the dispensary that might help with the nauseau and eating etc if you live in a state that offers it. 

Sat Feb 20, 2021 9:09 am

JoeCal1952 wrote:Hi Lily17

I have some output now after the heating pad and cola.

Not a lot but there is promise. I still have discharge from my bottom and that concerns me. How long does that go on? I called the Dr yesterday but due to snow the clinic was closed. It has been since 12/30 since surgery and still dis charge?

Also, having a tough time keeping this bag clean. There wasn't much out put but I wanted to clean it out. I tried rinsing the bag and it is worse.i just changed this bag and hate to waste it. It's all filled with a bit of nasty liquid and I can't drain it. What a mess I am. It smells even with flaps closed

Joe





Sat Feb 20, 2021 10:30 am
JoeCal1952 wrote:




Joe ... I hate to tell you , but I had discharge after my anal resection for 6 months . The cavity left will slowly fill with tissue and eventually stop. It's all in the internal  healing process , then as this cavity closes , so will your outer wound . Wear a thin pad to protect your clothing and just wipe gently with a baby wipe . Your poop will smell with what you ingest , similar to a non Ostomate. I survived on water , creamed soups , saltines nibbling , applesauce. But it's the WATER with added electrolytes that's the key . Ileostomy needs to have salt , sodium , potassium..,this is very important. There is a list of foods that will be on here .or look up your local chapter of Ostomy support groups . There you can obtain this list . I'll try to photo and paste my ileostomy list on here . Walk gently with your diet and keep moving . Each day will be better . I do not rinse my bag , but I do use a lubricant/ deodorant in it when needed . It helps tremendously. Take toilet paper when you empty and open the edge and wipe it out before closing . Then your good to fold and it won't smell . I thought I smelled for those 6 months , jyst be patient. You just had major double surgery at the same time . 

Sat Feb 20, 2021 10:34 am
Ritz wrote:


Joe ... I hate to tell you , but I had discharge after my anal resection for 6 months . The cavity left will slowly fill with tissue and eventually stop. It's all in the internal  healing process , then as this cavity closes , so will your outer wound . Wear a thin pad to protect your clothing and just wipe gently with a baby wipe . Your poop will smell with what you ingest , similar to a non Ostomate. I survived on water , creamed soups , saltines nibbling , applesauce. But it's the WATER with added electrolytes that's the key . Ileostomy needs to have salt , sodium , potassium..,this is very important. There is a list of foods that will be on here .or look up your local chapter of Ostomy support groups . There you can obtain this list . I'll try to photo and paste my ileostomy list on here . Walk gently with your diet and keep moving . Each day will be better . I do not rinse my bag , but I do use a lubricant/ deodorant in it when needed . It helps tremendously. Take toilet paper when you empty and open the edge and wipe it out before closing . Then your good to fold and it won't smell . I thought I smelled for those 6 months , jyst be patient. You just had major double surgery at the same time . 


To add Joe , I consume at least 1 gallon of plain water a day , plus my coffee, tea.... soda makes my bag swell . 
stay well and positive... it's just a process . Eat tiny amounts 6 times a day ...this also helps .

ritz Cathi 

Sat Feb 20, 2021 10:43 am
Ritz wrote:


Joe ... I hate to tell you , but I had discharge after my anal resection for 6 months . The cavity left will slowly fill with tissue and eventually stop. It's all in the internal  healing process , then as this cavity closes , so will your outer wound . Wear a thin pad to protect your clothing and just wipe gently with a baby wipe . Your poop will smell with what you ingest , similar to a non Ostomate. I survived on water , creamed soups , saltines nibbling , applesauce. But it's the WATER with added electrolytes that's the key . Ileostomy needs to have salt , sodium , potassium..,this is very important. There is a list of foods that will be on here .or look up your local chapter of Ostomy support groups . There you can obtain this list . I'll try to photo and paste my ileostomy list on here . Walk gently with your diet and keep moving . Each day will be better . I do not rinse my bag , but I do use a lubricant/ deodorant in it when needed . It helps tremendously. Take toilet paper when you empty and open the edge and wipe it out before closing . Then your good to fold and it won't smell . I thought I smelled for those 6 months , jyst be patient. You just had major double surgery at the same time . 

Hi Ritz. If the discharge lasts that long, let it, as long as there is nothing wrong. I use depends for now but I still have pain in both cheeks and the depends kind of hurt that cheek area

.No discoloration, just pain. 

When I said the poop smells, I meant after I cleaned the bag and refoldrd the tabs. I still smelled it until I cleaned it like 3 times. I am holding on pretty goid. Just an inconvenience.

Stay well and thanks

Joe



Sat Feb 20, 2021 10:45 am
Ritz wrote:


To add Joe , I consume at least 1 gallon of plain water a day , plus my coffee, tea.... soda makes my bag swell . 
stay well and positive... it's just a process . Eat tiny amounts 6 times a day ...this also helps .

ritz Cathi 

I can't drink more than a liter of smart water. It's enough to keep me going. 

Thanks



Sun Feb 21, 2021 8:49 pm

Hi Joe, 

I had a rough road after my ileostomy was created about 7yrs ago and reaching out to others on a different forum, similar to this one, made a huge difference for me. I felt totally lost. My home care nurse told me about online ostomy support groups. I had a total proctocolectomy as well and that thing drained for years. Real bummer! But now it only causes me problems if I eat gluten (odd, but true). I had a lot of blockages for a long time. Drinking grape juice sometimes helped with blockages, don't know why. Also, hot weak tea. Taking hot showers and moving around helps. Another one of my home care nurses told me that a GI doc she worked for used lorazepam to treat difficult blockages because it relaxes the muscles. I still rely on powdered protein, vitamin and mineral supplements that I can drink and absorb better. Also gummy vitamins are good. I learned from a few docs that sugar causes bacterial and fungal imbalance and therefore made my output too watery. Also digestive enzymes help if they are taken just before eating. I find that if I eat high fat and protein foods my output can really be offensive (no matter how many matches I use) and taking enzymes has helped with this. I am never without electrolyte powder that can be mixed with water when I am feeling dehydrated, that's #1 most important. Hang in there, you'll figure out what works for you. Phoenix magazine, published by UOAA (United Ostomy Associations of America), has a lot of good articles too. Hoping maybe some of this is useful for you. 

 

Tue Apr 06, 2021 11:44 pm

When I first came on this site I remember Bill telling me "chew, chew, chew!!"  He was so right!! The times I did get a blockage it was because I did not chew thourghly.   I have had a therapist even before my two emergency surgeries.  I had the first one and it strictured so 7 months after the first ileostomy,  I was rushed into emergency surgery a second time. My therapist was a lifeline for me.  I lost almost all my hair from having two surgeries so close together.  She was wonderful and got me through the depression stage and then after that, I ended up divorcing my spouse of 15 years.  She helped me through that too.  I was in the Military and have PTSD from being beaten up by a client in my other job so my therapist has been very helpful.  It will get better...please believe that. Just give it some time and give yourself permission to heal! May God bless you!!

Tue Apr 20, 2021 3:43 pm

Hi Joe,    I read your post and all the replies with interest.    Unfortunately, I don't have  " an easy answer for you"..   I' have my ileostomy for over 55 yearss,, and despit the early trauma of illness and surgery, ,  then marriage, childbirth,   r aising two children, and then divorce....I look back and believe I had a good life.  I'm appreciative for  all that the ostomy allowed me to  do.    Unfortunately, we don't always get what we want..   I've had one debilitating ailment, after another over the last 5-10 years.     My positive outlook is very tarnished, and I've been on new meds for depression....and even in intense out patient " 'mental heallth" programs..  I just couldn't reconcile my ongoinng ailments with an active and productive life.....and I ultimately let depression move in..    How to dig out.....not so easy.     First and foremost,    as with most things, t here are " wants and needs".    I have a serious Gastro issue, like IBS that  easily leads to dehydration.    One doesn't always know if your dehydrated,   but this last time,  I had my self rushed to the hospital because I couldn't keep down water.   My postassium level was so high, that I was put on the cardiac floor..    So, for us ostomates.....drinking water ( not soda & coffee, is a  need, not a want)    Through the last year of therapy,  I came to realize  that much of my depression was situational...    Medical issues, personal & family issues,  financial issues,   the pandemic & isolation......all added to my feeling that at my age ( 72)   the good years were over, and there was no purpose to life.    .I whined and cried like a baby,   ( to my therapist, myself and my sister).   I gave up social connections,    and became resistant to leaving the house (  fear  of the virus)?    Cooking which I always loved to do, seemed without purpose, and so I started to rely on  fast food,  or no schedule..   One son and his family live in Australia, and the other is in Pa..    But since we were in shut down....visits were all virtual...I'm not going to belabor this.  I think you understand..    So what changed?    Noothing much...     I got my first vaccination last month, and the  second 2 weeks ago.    I made a conscious decision, to change my thinking.......and start to  believe in " healing"    of the mind, spirit and body..     Say yes   more..   Drink Water more.   Connect with friends more..    Think happier thoughts.....And so on.  I'm sure I'll still have some bad days, but for now , this is a thought.....and action.    I hope it  helps you.    Best regards   Marsha

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