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I could use some help...

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lindaJG

Guest
Hello there. My mom has had CD for at least 30 years now. She had a flare up in the 80s but she had a resection and she's been pretty well kept under control since then. But in the past year, she has gotten really really ill. She has lost over 30 pounds and cannot keep food in. She is down to 70 pounds and everything she eats goes right through her instantly, so she barely eats anything anymore because of that. She is also in constant pain, which makes everyday tasks impossible. She was finally checked into the hospital on Monday, but after running numerous tests (xrays, scopes, ultrasounds, catscans) the doctors claim that they see no obstruction or anything that should be causing the pain or problems with eating and keeping food in. So, because of this, the doctors released her. My whole family is really at a loss of what to do. She is at a very dangerous weight and she really really needs to put on weight if she wants to live much longer. I'd love some support or suggestions, or anyone's stories if they went through the same thing and how they got through it...thanks.

-Danielle
 
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smarttbone

Guest
Well, I don't retain weight well either. But I normally eat mostly carbs. They are very easy to digest, they put pounds on the body, and they are plentiful. Protein goes straight through me, so if your mom eats mostly that, that could be a problem, and of course that protein doesn't add much weight
 

mikeyarmo

Co-Founder
Welcome lindaJG ,

I am truly sorry to hear about the situation your family and mother are now in. I can understand how this is a scary time for you and how you feel out of options. I will first advise that anything you read here is just opinion and not medical fact. We all want to help you as much as we can, but we do not have the formal education or the ability to provide you a "prescription" so to speak on what should occur. I just want to make sure you do not take what is written here as anything more than opinion.

Obviously if your mother is not eating anything or absorbing much of what she is eating, she is going to lose weight. I think you may want to try a diet of a nutritional shake like ensure, boost or resource. These contain a vast assortment of vitamins and minerals, and if taken in large enough quantities, provide enough calories to maintain or gain weight (especially when taking the plus calories version). These may be absorbed better by your mother, or at least not cause as much trouble as solid foods.

I think the only problem with this is that it does not have enough fibre in it to be had totally alone. It can be a short-term fix though, so maybe speak with a doctor or dietician about it. Just make sure your mother drinks each can slowly (one should take 15-30 minutes) as drinking them too fast can cause digestion pain as the liquid is rather dense.

If you have any specific questions about anything PLEASE ask them.
 
Well it seems that maybe she should be put on a high dose of prednisone with some Imuran as back up or maybe Remicade, I only started gaining weight back with the Prednisone (makes you ravenously hungry) but other than that, I have also heard that the liquid diets such as Ensure are easy on the stomach and add poundage.
 
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lindaJG

Guest
...

well she has already gone the steroid route and it didn't work. she's been on remicade for over a year and that also hasn't worked. she tried drinking boost about a year ago, but it made her sick and her dr told her not to drink it, so she stopped. i've been trying to get her to start drinking it again, but she doesn't seem to want to. i'm looking into contacting other treatment centers and i've been trying to make sure she eats at least two meals a day plus some snacks in between, as much as she can handle without getting really nauseous or in a ton of pain. i'm trying everything that i possibly can!
 
Hi
Ask her Dr. about TPN. Feeding through IV.
I was on it for 8 months at one time and gained 30 lbs
I'm small and tiny to begin with.I was down to 70 lbs once.

Goodluck
 
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lindaJG

Guest
thanks

I did ask her doctor to do the TPN, but he refused, saying that it could damage her liver. But right now, I'm more concerned with her getting to a healthy weight, so I couldn't understand why they wouldn't do it. But thank you for the suggestion, I do really appreciate it!
 
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ruthymg

Guest
Hi, I too put some weight on with the pred but then stayed at a certain weight and couldn't put anymore on, until I had surgery last June.I now have a stoma and since having it I have put on approx 20 pounds. I'm now worried about putting anymore on as I'm now a healthy weight. Maybe bland soft foods may help your mum to get her appetite back, small meals but regularly, have you tried that?


Ruth
 
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lindaJG

Guest
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yeah i've been trying to feed her small meals but it seems like no matter what she eats, she gets sick right away. before she was in the hospital, she's basically lost weight everyday. but so far, in the past few days, she has stayed at her same weight and not lost any. so that is a step in the right direction I guess. now we just have to concentrate on gaining.
 
E

Evagation

Guest
How about anti-nausea meds? Whenever I've been so sick that I can't keep food down (and it happens on quite a constant basis), I take some phenergan (generic: promethazine), which is actually an anti-histamine but it works on nausea the same way Benadryl does, for the same reasons, it's simply stronger than anything OTC. When the phenergan stopped working, and I was still throwing up everything, my doc put me on Zofran, which is an anti-nausea drug used for patients going through chemotherapy. The Zofran definitely worked, for me.

Those are my only new suggestions. Even though all of the meds I mentioned will cause drowsiness, to the point where it would just flat-out knock me out an hour after I took it, I was still able to drink an Ensure (I like Ensure solely for taste reasons--it's creamy and the chocolate flavor actually tastes like chocolate) before passing out. So, it actually worked out fairly well for me. I would take the phenergan (or zofran), wait half an hour for it to hit, drink my Ensure, and then go to sleep for a few hours. By the time I woke back up, the food had gone through my system and I wasn't nauseous at all.

Good luck to you, and your Mom.

Katie.
 
Ginger works for nausea, helps digestion and has no nasty side effects. I take it with every meal even though I do not have to. Doesn't cost much either.

I tend to like treatments that do not have downsides to them.

Good Luck

D Bergy
 
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rattle

Guest
lindaJG said:
I did ask her doctor to do the TPN, but he refused, saying that it could damage her liver. But right now, I'm more concerned with her getting to a healthy weight, so I couldn't understand why they wouldn't do it. But thank you for the suggestion, I do really appreciate it!
Hi,
Really sorry to hear about how ill your mum is.Can i ask you did the doc say why a iv feed could damage your mums liver and if he/she did not, ask for a reason. I have been iv fed several times and no one mentioned as to any problems caused by the iv.
Your mums weight is very low so they should be doing something about it.Dont take this from them be assertive but polite.Demand positive action from your mums medical team you only get one mum.
best wishes
 
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