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Still struggling on liquid diet

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Crohn's Disease
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gumby44
Veteran Member
Joined : Nov 2007
Posts : 4505
Posted 12/31/2011 9:37 AM (GMT -6)
Hi everyone,
I was in the ER on Dec.18 with a partial obstruction and advancing of my Crohn's with some strictures and inflammation in my ileum. I went home with a tapering dose of Pred starting at 40 mg, and I'm currently on 30 mg. I'm also still waiting to get blood test results to see if I can start 6MP, but I probably won't hear about that until after New Year's. My instructions were to start with a liquid diet and slowly add in solid food. I am doing ok with soft things like scrambled eggs or canned fruit, but as soon as I move farther like a little rice or pasta, I get nauseated and in pain again. My question is whether I'm just not being patient enough. For those of you who have experience with strictures, how long does it take to advance the diet? I am trying to add protein shakes for nutrition, but I don't always tolerate that very well either. I'm losing weight quickly, so I know I'm not keeping up with calorie intake. I will call my doc on Jan 3 when the office opens back up, but any advice would be greatly appreciated. Thanks
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Nanners
Elite Member
Joined : Apr 2005
Posts : 14999
Posted 12/31/2011 10:29 AM (GMT -6)
I think I would stay with what you can tolerate. Eating more just to try to gain weight, is just going to cause you more pain. I think you need to get back in touch with your doc, but seeing you have an appt Tuesday I would wait and discuss this with them. Have you been using Boost or Ensure drinks to supplement with? If not I would add in like 3 of those a day. Maybe try eating 5-6 small meals a day. Can you tolerate bread? Maybe some toast with a scrambled egg. Or cream of rice? I am trying to think of what I was eating when I got out of the hospital. Maybe take a can of soup and blend it till liquidy and drink that? Big hugs Gumby, I feel so bad for you. I too remember how bad I felt, and then to be on Pred at the same time, ugh!! Hope the doc has some needed answers for you. Sorry not more help...Hugs!
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gumby44
Veteran Member
Joined : Nov 2007
Posts : 4505
Posted 12/31/2011 10:55 AM (GMT -6)
Hi Gail,
My doc just called just to check up on me. (that was a bit surprising but nice) He said he isn't surprised I'm having a hard time and to just keep with the liquid diet and not to taper the Prednisone any further until things stabilize. I asked how long it takes until I can advance my diet, and he only answered something like "until you feel better." We're still waiting for the Prometheus test results to see if I can take the 6MP, so he'll call when he gets that back. I guess my leukocytes are high so he says that explains my exhaustion.

I'm just getting worn out, depressed and frustrated. I'm supposed to go back to work on Jan 3 and I'm anxious about how I'm going to manage. I'm a self employed, so I can take more time, but I have clients who really need to be seen. Gail, how long did it take you to stabilize after partial obstructions? I hate the taste of Ensure, but I guess I can try again. I can eat a scrambled egg, but even the toast is getting to me. I'm just whining.....this is taking sooo long to feel better. Thanks for listening.
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stripey
Veteran Member
Joined : Feb 2011
Posts : 1059
Posted 12/31/2011 12:15 PM (GMT -6)
I presume the stricture is caused by inflammation alone, then it will take some time for it to reduce and hopefully you will feel better soon. In the meantime stick to what you can tolerate. When my stricture plays up I stick to mashed potato made with powered potato and so it is quite sloppy and not too thick. White bread seems to go ok for me, soups that have been liquidized and I make at home so can use anything as long as it is blended so no lumpy bits doesn't cause a problem. Try omlettes if eggs are ok and you can add very finely chopped cooked chicken or some cheese. Blamange (?sp) ice cream anything high calories as long as you can tolerate the higher sugar content or look at sugar free, maybe jelly as well.

I sort of work on basis of sloppy food that has no lumps seems to go through for me ok but play around with things and find what suits you best. Hope it settles soon.
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Time Out
New Member
Joined : Missing Key Value : en-US, 587 2011
Posts : 14
Posted 1/1/2012 3:42 PM (GMT -6)
Dear Gumby44,

I have had so many surgeries on my intestines from Crohn's, holes in my intestines and Colon Cancer from the darn Crohn's, every time I tried to eat again it was slow going and sometimes i didn't even feel like it. I would start with liquids like you and nice warm tea, then creamy things like ice cream puddings, yogurts (yogurt is very important for people like us). Then simple things like crackers, toast "just a little at a time" and drink boost its very good for you and it tastes soooo much better then ensure. You have to remember your body just went through a very traumatic experience it needs time :-)  

Try not to rush back into work if you don't have too,your customers will have to understand...You have to come first! Please don't make the same mistakes i did nono

I hope you feel better soon, please keep in touch.

Timeout

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Time Out
New Member
Joined : Missing Key Value : en-US, 587 2011
Posts : 14
Posted 1/1/2012 3:46 PM (GMT -6)
 P.S. I still would contact your doctor again if this continues. I also forgot to mention sometimes they would put me on a tube feeling to get me going again if it gets real bad.
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gumby44
Veteran Member
Joined : Nov 2007
Posts : 4505
Posted 1/1/2012 7:41 PM (GMT -6)
Thanks for the responses. I'm doing ok. I think I'm just shocked and frustrated about how long this is taking to stabilize. My doc called again today (I swear that guy never stops working!) and he got my Prometheus tests back and gave me the ok to start the 6MP tonight. I'm nervous about taking it, but I know I don't really have much choice. Time Out, thanks for the suggestions...I'll go buy Boost tomorrow and see if I can tolerate it. I'm losing weight so fast, even on the high dose of steroids, so I have to get on top of this. Thanks for all of the support. I greatly appreciate it!
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Time Out
New Member
Joined : Missing Key Value : en-US, 587 2011
Posts : 14
Posted 1/1/2012 8:00 PM (GMT -6)
Your welcome! Be well smurf
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sparkleplenty
Veteran Member
Joined : Nov 2010
Posts : 597
Posted 1/1/2012 10:04 PM (GMT -6)
Wow, that's cool your GI has checked up on you twice! When I was hospitalized in November for a couple days for my flare, it was surprising how long it took to feel better. I think I was so wound up from the IV steroids that I didn't take it easy like I should have. I was alright with soft solid foods, but was surprised even after a couple of weeks how I couldn't resume my normal diet.

Based on what everyone said here, when I tried 6MP, I took it at night, and that really helped. I think I had a little nausea from it but it wasn't too bad and went away fairly quickly.

Hope you get to feeling better soon!!
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