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Crohn's Disease Forum » Extra Intestinal Manifestations » Mouth » Malnourishment is gonna kill me before anything else.


09-11-2015, 06:53 AM   #1
vocalartillery
 
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Location: Richland, Washington
Malnourishment is gonna kill me before anything else.

Riddle me this...I am overweight and malnourished...

I have PCOS that makes my weight gather in one spot and because my stomach can't digest food properly and I can't eat any solid food without getting sick, I'm a total mess. I am again on antibiotics because I picked up a parasite in the hospital. Well I knew it would happen so here I am with thrush again. I get it on a monthly basis.

I don't know if this is the right subforum but I need advice. Can I ask my Dr for a feeding tube? I've tried shakes and chewy vitamins, I've tried liquid one and natural remedies and nothing is helping.

Please help. I don't know what my other options are but this has got to stop.

09-11-2015, 08:14 AM   #2
24601
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If you aren't able to eat solid food then the best option is enteral nutrition and for anyone who can't manage to drink enough of the formula then tube feeding should absolutely be an option.

I struggled to get some of my doctors to understand that I couldn't manage the volume of formula necessary to maintain my weight (and I'd already lost a lot) and needed an NG tube. I think that some doctors don't think adults should need an NG tube and that they are just for children but that's not the case. There are good reasons to use an NG tube and enabling a patient to get adequate nutrition should be a priority so I would absolutely discuss it with your doctor.

Have you already tried having enteral nutrition orally? And if you have, what issues are you encountering? Taste? Or difficulty drinking enough?

Is there a plan in place to deal with the cause of you being unable to eat solid food longer term? Has your GI explained what they think is causing your inability to eat? (Strictures? Imflammation?) Are you on any Crohn's meds?

For the thrush, you could talk to your doctor about anti-fungals. If it's limited to the mouth then there are anti-fungal mouthwashes, although saltwater rinses are also good.

Do talk to your GI about all these issues. You absolutely have the right to get good clear answers and help with all of this and if your GI is not helpful then I really would suggest a change of doctors.

Best of luck
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Stricturing jejunoileitis dx 1996 aged 17
Current treatment: stem cell transplant
Previous treatment: Humira + methotrexate
Past treatments: prednisolone, azathioprine, budesonide, pentasa, EEN (oral and NG), elimination diet, SCD, whipworms, 6mp, Remicade, anti-MAP antibiotic therapy
Surgeries: small bowel resection and strictureplasties in 2001, 2005, 2009, 2014
09-11-2015, 08:21 AM   #3
vocalartillery
 
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Join Date: Aug 2014
Location: Richland, Washington
If you aren't able to eat solid food then the best option is enteral nutrition and for anyone who can't manage to drink enough of the formula then tube feeding should absolutely be an option.

I struggled to get some of my doctors to understand that I couldn't manage the volume of formula necessary to maintain my weight (and I'd already lost a lot) and needed an NG tube. I think that some doctors don't think adults should need an NG tube and that they are just for children but that's not the case. There are good reasons to use an NG tube and enabling a patient to get adequate nutrition should be a priority so I would absolutely discuss it with your doctor.

Have you already tried having enteral nutrition orally? And if you have, what issues are you encountering? Taste? Or difficulty drinking enough?

Is there a plan in place to deal with the cause of you being unable to eat solid food longer term? Has your GI explained what they think is causing your inability to eat? (Strictures? Imflammation?) Are you on any Crohn's meds?

For the thrush, you could talk to your doctor about anti-fungals. If it's limited to the mouth then there are anti-fungal mouthwashes, although saltwater rinses are also good.

Do talk to your GI about all these issues. You absolutely have the right to get good clear answers and help with all of this and if your GI is not helpful then I really would suggest a change of doctors.

Best of luck
My main problem is I can't drink enough to maintain good nutrition. 1 popsicle makes me feel like vomiting. It's awful because I miss real food and sometimes I cheat but when I do I usually end up in the hospital.

I am still waiting on an official diagnosis but the general consensus right now is crohns of the small intestine. For some reason my stomach can't digest food, that's why the pill cam sat in my stomach for 8 hours and when it finally passed into my small intestine I felt the whole thing and doubles over in tears. I don't currently take any meds for Crohns. Up until now I think most physicians didn't take me serious.

I try to maintain my nutrition but it isn't working. My teeth keep breaking. My white blood cell count is always significantly elevated and so I'm constantly on antibiotics which in turn give me thrush and if it wasn't hard enough to eat without it...with it it's impossible.

09-11-2015, 08:50 AM   #4
24601
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I have been in that situation of being unable to eat and hardly able to drink without vomiting and not getting help from my doctors so I really feel for you

For me, I already had a diagnosis of Crohn's and the problem was tight fibrotic strictures in my jejunum and ileum (the highest of which was causing an intussusception). That's when I moved from drinking formula to using an NG tube so that I could pump slowly. If you have issues with your stomach emptying then perhaps you would need an NJ tube (as it's placed in the jejunum it bypasses the stomach).

Have you tried sipping a shake like Ensure or Boost as an interim measure? Of course you miss real food - right now your body is starving

But if you can't have the small volume of clear fluid in a popsicle, then I'd be very worried about dehydration as well as malnutrition and so I think your doctors should want you on iv fluids. I know being in hospital is horrid but sometimes you can get answers sooner by being right in front of the doctors noses!

I do think you need a diagnosis soon and treatment for the root cause of this problem and if your current doctors aren't taking things seriously, I would seek a second opinion.

I would also try saltwater mouthwashes while you are on the antibiotics. I've found that helps a lot with thrush and when you are dealing with so much, I think any little thing that you can do to feel a bit better helps.

Hope you get some answers and help soon
09-11-2015, 08:54 AM   #5
vocalartillery
 
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I drink Ensure if my stomach will let me, and I eat peach outshine popsicles. That's basically it. I drink water when I can but I'm always so dehydrated I want to guzzle it and that makes things worse. I'm going to try the saltwater rinse and hope it doesn't burn too bad lol.

I'm gonna call my Dr as soon as 8. I've been up and down all night until 3 when I just gave up.

09-11-2015, 06:54 PM   #6
my little penguin
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My Support Groups:
You may need a more broken down shake
Like peptamen or peptide
Or Even elemental - splash e028 vionex
Etc ...

Good luck
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09-12-2015, 09:41 AM   #7
chelleybelly
 
Join Date: Feb 2013
Location: Colorado Springs, Colorado
Oh man!! You sound just like me 2 years ago!! I am overweight but malnurished. It makes no sense to say that in the same sentence to most, but for those of us with Crohns.... Well, we get it. I had problem eating and keeping things down. I did the BRAT (bananas, rice, applesauce & toast)diet and supplements for a long time but that is no way to live. Also, it was more like the RA diet (Rice & applesauce. I had thrush constantly & all the things yo u mentioned. I took a proactive approach and logged all my "crohns" problems... I.e..... What foods made me swell internally, made me throw up, diarrhea, ect. Then I started to make my own yogurt at home. I got the Crohns and Colitis Diet book. Now I'm not saying everything was good tasting but it definately helped my Crohns & there was quite a few recipes that were really good and calming to my stomach. I also have Remicade infusions every 6 weeks. This has made a lot of difference as well. In all honesty... This is a constant battle you have to try to stay 1 step ahead of Crohns and all the side effects from the "treatments" for Crohns. I say your best defense is a positive attitude (not denial, mind to u) and humor! A LOT of humor. 😀😝

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09-14-2015, 08:08 PM   #8
vocalartillery
 
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I ended up in the hospital last night with what they thought was a blockage but the Dr said "I don't know what I'm looking for but I think you're ok. They kept giving me tiny bits of meds. 1my 2mg. It was so insane. Finally we left I didn't went to deal with shitty doctors. When I have a means doctroy I high tail it out

09-15-2015, 09:40 AM   #9
chelleybelly
 
Join Date: Feb 2013
Location: Colorado Springs, Colorado
How are you feeling? Did anything help? So you have a GI Dr you can talk to?

09-15-2015, 11:10 AM   #10
vocalartillery
 
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I feel like a pile of poop with legs. I called my gi and had all the tests from the hospital sent to her so I guess we'll see

09-15-2015, 11:43 AM   #11
chelleybelly
 
Join Date: Feb 2013
Location: Colorado Springs, Colorado
Good luck. No pund intended in the poop comment right? I know you feel aweful! Just trying to put a bit of laughter in your life

09-15-2015, 11:43 AM   #12
chelleybelly
 
Join Date: Feb 2013
Location: Colorado Springs, Colorado
Hope everything turns out ok

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