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05-29-2014, 06:15 PM   #1
blobbyknobby
 
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Newbie needing help!

Anyone here have problems similar to mine, can suggest any help?
Ive lost 30kg (87kg in Jan) in the last 5 months, Ive reached the point I now cannot eat. Only very clear liquids stay down (past month)im loosing 1kg+ per week atm... Ive tried all the dietitians supplements, now ive been given Modulen again to try and give some nutrient input. If this fails, they have no choice but to go to a J Tube or IV/TPN .... That scares me. I was on Modulen once before and was difficult even flavored. At this rate ill be 8st or under by next month.... Doc/Dietitian have written to consultant to push forward surgery.

I previously had a loop Ileostomy for a year to relieve pain and rest my Large bowel. This was reconnected due to being mis-formed.
05-29-2014, 07:26 PM   #2
Clash
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Can you take the modulen by ng(nasogastric) tube? My son inserts his ng tube each night and removes it each morning. He started by taking in 2675 calories a night of elemental formula every night. Now he takes in 1500 calories a night for 5 nights each week.

He uses a size 6 French which is aabout the size of a spaghetti noodle and he usually sets the pump at 180 so it doesn't cause any nausea.

I hope you are able to find something to help you soon.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
05-30-2014, 02:26 AM   #3
blobbyknobby
 
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Can't tolerate anything via my stomach. All just comes back as vomit :-(
06-02-2014, 08:54 PM   #4
SupportiveMom
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My daughter had issues with the NG tube so I understand going the J tube route. We had no choice but to go full dosage prednisone again as her weight dropped twice as fast on modulen, but we think it was an allergy issue. What other meds are you on?

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Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
ibdsupportivmom.wordpress.com ☆
06-03-2014, 03:27 AM   #5
blobbyknobby
 
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Im not on any current med, besides oral morphine to numb the pain. Ive been thru every medication over the years... Nothing works... Got weighed again.. seems to be 1-2kg per week... Fecking joints sore constantly....
06-03-2014, 06:15 AM   #6
SupportiveMom
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Wow morphine is a strong pain killer. Without a medicine to deal with crohns you probably won't stop the weight loss. What meds have you tried? Why were they stopped? NG /J tube feeding isnt too bad and can't hurt, only help adding the calories which it sounds like you need.

On a side note, I see you havent posted your story or introduced yourself in the forum. It is a good idea to do so and helps you from repeating yourself when seekinf advice.

06-03-2014, 06:29 AM   #7
blobbyknobby
 
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Ill certainly do that... My story is kinda long and overly complicated... But cant harm !!
06-03-2014, 03:08 PM   #8
SupportiveMom
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Right there with ya in the complicated version there! Looking forward to seeing it. Stay strong.

06-03-2014, 03:10 PM   #9
blobbyknobby
 
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Posted a very short and concise version. If anyone cares to read it!
07-06-2014, 08:31 AM   #10
Spooky1
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Blobby, I have a PEG tube and the rate is 50mls per hour. This might help you to keep it down. Must say, when I got pukey with the NG tube it gets all caught up in the throat which I didn't like. Hope you gain weight soon.
07-06-2014, 09:16 AM   #11
blobbyknobby
 
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In hospital ATM with a NG tube, slow feeds and seems to be tolerated ok. Was told they wouldn't use this as a perm form or feeding, they would insert a jtube in time.
07-06-2014, 10:19 AM   #12
Patricia56
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Glad they found something that works. Hope your surgery is soon and that it is wildly successful.

All the best
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Badger, 18, CD, overall great guy
Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
07-06-2014, 12:46 PM   #13
Spooky1
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What boring rate are you on, and what feed? So sorry you're in hospital, hope you're not missing good weather like we have in the UK at the moment.
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