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Dutches
New Member


Date Joined Jan 2008
Total Posts : 17
   Posted 2/26/2008 6:50 PM (GMT -6)   
How do we survive living with an Ileostomy when my food absortion is so poor I cannot keep weight on. I drink Ensure 4 times a day. Food makes me sick. I am struggling here with this and would like to know if anybody else has the same problem. Would like to hear from you. Need all the help I can get.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 2/26/2008 7:15 PM (GMT -6)   
Dutches --- is your output really watery? That would be my first of many questions? If it is, adressing the output and slowing it down will help the weight issues and probably help you to not be quite as nauseous. Are you taking any meds that could be attributing to the upset stomach?
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 2/26/2008 7:26 PM (GMT -6)   
hi dutchess. how long have u had ur ileostomy? have u spoken to ur doctor about this? does he not have u on any immodium? i too had lots of watery output right after my surgery, but the doc also put me on 5 imodium a day to slow it down. I hope someone here can give u better answers. i'm sorry ur not feeling well
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 
Temp Ileostomy performed 1/29/08
Still Adusting
 
Healingwell.com has been my Godsend...Thank you


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 2/26/2008 9:04 PM (GMT -6)   

As long as your terminal ileum isn't damaged you shouldn't be continuing to lose weight.  When did you have your surgery and for what reason?  What are you eating along with your Ensure?

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Dutches
New Member


Date Joined Jan 2008
Total Posts : 17
   Posted 2/27/2008 5:25 PM (GMT -6)   
Peggy113 Thank you for your help. I appreciate it. There doesn't seem to be an answer as what is really wrong with me. Have seen the doctors and had tests done. Just can't find the answer. I continue to be sick and lose weight. Time will tell which way this is going to go. nono

Dutches
New Member


Date Joined Jan 2008
Total Posts : 17
   Posted 2/27/2008 5:31 PM (GMT -6)   
praying4healing said...
hi dutchess. how long have u had ur ileostomy? have u spoken to ur doctor about this? does he not have u on any immodium? i too had lots of watery output right after my surgery, but the doc also put me on 5 imodium a day to slow it down. I hope someone here can give u better answers. i'm sorry ur not feeling well
Hi: Thank you for your input on this. I have had this since 2005. I take immodium too. But I just cannot absorb food. Vomiting all the time. Have several medications for this. It just won't stop. The doctor said they have done everything they can do.

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 2/27/2008 7:42 PM (GMT -6)   
dutches,

as i said i dont have your problem, but PLEASE do not accept that the doctors have done everything they can do! even if you have to go to visit a different doctor. You can't go on the way you are now or u will start to deteriorate. You say uv had urs since 2005? so i take it it hasnt always been this way? What changed in your life, diet, meds mayb when this started?

I honestly, and this is jmho, would tell the docs, if theres nothing they can do then they need to reverse it. The purpose of this surgery is supposed to be to bring relief and make us more healthy. I dont know how you were feeling b4 the surgery, but I can't see how the situation ur in is making you any more healthy. Please get a second opinion, or stay on ur docs, just don't accept life this way
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 
Temp Ileostomy performed 1/29/08
Still Adusting
 
Healingwell.com has been my Godsend...Thank you


Dutches
New Member


Date Joined Jan 2008
Total Posts : 17
   Posted 2/28/2008 11:48 AM (GMT -6)   
praying4healing said...
dutches,

as i said i dont have your problem, but PLEASE do not accept that the doctors have done everything they can do! even if you have to go to visit a different doctor. You can't go on the way you are now or u will start to deteriorate. You say uv had urs since 2005? so i take it it hasnt always been this way? What changed in your life, diet, meds mayb when this started?

I honestly, and this is jmho, would tell the docs, if theres nothing they can do then they need to reverse it. The purpose of this surgery is supposed to be to bring relief and make us more healthy. I dont know how you were feeling b4 the surgery, but I can't see how the situation ur in is making you any more healthy. Please get a second opinion, or stay on ur docs, just don't accept life this way


Thank you for your concern Have seen the doctor numerous times now and he says there is nothing more that can be done. I saw a specialist as well. Same answer. So, I feel I have no choice anymore. I know I won't live long this way. But there is no cure for me that they know of.

Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 2/28/2008 2:04 PM (GMT -6)   
Dutches,

I feel your pain....my doctor has said the same thing to me.... i will soon have a surgery to have my whole colon and rectum taken out. after that, we will pretty much be at the end game. My doctor is good too, he is the director of the Inflammatory Bowel Disease center at Cedars-Sinai in LA, so I know it isn't just that he doesn't care or is a bad doctor, he is being honest with me.

However, you seem to be more than a bit worried about it, and I think you should talk to the doctor about your feelings and see if you can get some anxiety meds to help when you feel really down....even if it is just something you take on occasion like xanax or ativan or something....

then you need to find some more people you can talk to about how you feel, i mean really talk to. for me, just being able to tell my good friends, "my crohn's is killing me right now, and it just plain sucks!" can be so helpful.

i wish you good luck and hope you can get out of the hopelessness you are stuck in right now...

Nat
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 2/28/2008 2:05 PM (GMT -6)   
oh, one more thing....try adding salt to your diet, like eating salty french fries, or TV dinners or canned soup high in sodium, the sodium increase water retention, and will slow down your fluid output....
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?


Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 2/28/2008 4:03 PM (GMT -6)   
Dutches,

Have had ileostomy for two months and am having a horrible time putting on weight. Like you I have tried anything and everything.

I too use insure. Try blending it with a banana and adding protein powder. I thing this has helped me. I try to drink two a day. Hope this helps.
Jan,

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 2/28/2008 5:25 PM (GMT -6)   

Dutches,

Jan gave you a good suggestion with the banana/protein powder blended with the Ensure. 

I was down to 82 lbs after I had my surgery and was very nauseous.  My body was adjusting.  I barely broke 90-95 lbs for several years.  But just in the last couple of years I've finally gained a few pounds.

Keep asking and reading and trying different things.  Have hope.  There has to be something to help.


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Dutches
New Member


Date Joined Jan 2008
Total Posts : 17
   Posted 2/28/2008 8:14 PM (GMT -6)   
Hi Peggy: What kind of protein powder do you use? The name of it would be helpful. And what exactly do I mix with the banana and powder? Please advise. Thank you.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 2/28/2008 8:37 PM (GMT -6)   

Jan - what protein powder do you use?

Dutches - here's a link to a product that I used for years to help maintain my weight.  The only thing is that it is pretty high in fat so adding the banana helps to slow transit time IMO.   Also, I was able to mix it with milk since I was not lactose intolerant.  And it tastes pretty good, esp if you stick it in the freezer for an hour or so.  The only other hint about it would be to mix like the night before you want to drink it so it has a chance to dissolve welll.

http://www.axcan.com/scandishake_us.php?lang=1

Hope this helps.  It has several vitamins/minerals in it as well and doesn't taste like it.

And it is 600 calories mixed in 8 oz of whole milk.

Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 2/28/2008 9:56 PM (GMT -6)   
Peggy and Douch,

I have been useing Bx Essentials advanced protein. I just put a bottle of ensure plus, a banana, and protein powder in blender and blend for a coulple min. and drink it. K eep the ensure oi the ref. It has 450 calories in it. That twice a day gives me 900 calories.

Lost 15 lbs. this time in the hospital. Was down to 89 lbs. when I came home Jan. 7, 08. Have put on 10 lbs. in 2 months. But have really worked at it.

Dutch we all need someone to talk to. I only have my husband. So I'm so glad to have found all of you guys. I don't feel so alone.

Jan,

Dutches
New Member


Date Joined Jan 2008
Total Posts : 17
   Posted 2/29/2008 11:15 AM (GMT -6)   
Jan625 Thank you for that info about the powder. I will make sure to get some. Last night I made a smoothie with Boost and a banana and strawberries. The powder will certainly help. Take care.

Jan625
Regular Member


Date Joined Feb 2008
Total Posts : 115
   Posted 3/28/2008 10:47 PM (GMT -6)   
Dutch,
Was wondering how you were doing as. Hope you are putting on some weight and getting out aroung other people more as it is hard when we don't have anyone to talk to.

As I said before I only have my husband to talk too. Seems like everyone forgot me after I got sick. He has been wonderful threw all of this and goes to the store and everywhere else to take care of things.

This has been going on for eight months for us. I don't really go anywhere but to the Dr. or the hospital. But hopeing that will change soon.

Just wanted to say hi and let you know we are thinking of you.

Jan,
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