What is going on? Troubleshooting needed

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Dikid
Veteran Member


Date Joined May 2015
Total Posts : 2233
   Posted 12/29/2016 12:01 AM (GMT -6)   
will do a quick recap
February 2016- anemic despite iron supplements, had infusions
April 2016- symptoms (blood, pain) persisted, dietician recommended checking out small bowel due to nutritional deficiencies and anemia
May- June 2016 had imaging that showed small bowel inflammation
frequency of bowel movements, blood and pain increased
August 2016 started 9 mg entocort
September 2016 increased to 15 mg of entocort
October 2016 symptoms increased to multiple completely liquid stools/day, increased nausea
had extra remicade doses at 4 weeks apart which helped with pain and # of BMs, blood slowed dramatically
End of November nausea increased drastically and stopped eating/drinking
sister sent me to ED for fluids due to dehydration, was relseased and the next night was worse this time called IBD office and fellow on call told me to come in so I went to that ED and was admitted, had normal upper endoscopy and colonoscopy that didnt look too bad. I insisted on being discharged after a couple days (hate the hospital with a passion)

Im still super nauseated despite taking lots of zofran,
trying ginger/peppermint/preggie pops/ lemon etc but still really having trouble with eating/drinking
have dropped just over 10 lbs in a month
also in october started getting mild fevers but considerably elevated from my baseline in the evenings that are accompanied with chills


my labs were normal except for anion gap, elevated protien (assuming due to dehydration), low calcium/potassium
liver and pancreas enzymes were within normal limits

any tips? what is going on? so confused


Thanks Y'all
21 year old female
Originally diagnosed with severe UC on 4/27/15
Diagnosis switched to Crohn's 6/16
Remicade 10 mg/kg
Imuran 50 mg
zofran as needed

Please excuse typos. Usually post from my phone.

imagardener2
Veteran Member


Date Joined Jan 2010
Total Posts : 5538
   Posted 12/29/2016 7:21 AM (GMT -6)   
Undetected infection perhaps?
Have you been tested for C. difficile?
Lyme disease comes to mind as something that is hard to pin down but that's an outlier when you have Crohn's (although some people say that's what their undiagnosable symptoms turned out to be).

Good luck.
Diet=gluten-free modified Paleo+potatoes+low dairy, low grain, no seafood (IBS),low fiber diet
In remission April 2010 after 10 years of UC after no remission ever
gluten-free =bleeding stopped, dairy-free (less IBS) started remission path+food diary
daily: Balsalazide 750mg and 2 Ginkgold tablet
rarely: VSL#3, mesalamine enema, Canasa supp

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 10028
   Posted 12/29/2016 10:27 AM (GMT -6)   
So you had a normal upper endoscopy and colonoscopy but are still nauseated, have a fever, and reduced appetite? Is the diarrhea and other IBD symptoms now gone?
Moderator Ulcerative Colitis
John
, 38, in a minor flare, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; 50mgs 6MP, 4.8g Lialda, 7mgs pred (tapering)

You know you have uc when you take the dog for a walk and you both end up crapping in the bushes.

TroubledTurds
Veteran Member


Date Joined Jan 2004
Total Posts : 7878
   Posted 12/29/2016 12:01 PM (GMT -6)   
Common Side Effects of Remicade (Infliximab):
Stomach and chest pain
Chills
Cough, runny nose, sneezing
Respiratory infections, such as sinus infections and sore throat
Dizziness or fainting
Fatigue or weakness
Difficulty breathing (shortness of breath)
Tightness in the chest
Fever
Flushed face
Headache
Hives
Muscle pain
Nausea
Low blood pressure or high blood pressure
Rash or itching



i'm always wanting to blame meds for all the weird sh!t that comes along with UC/chromes - but i think it is a reality for some - maybe time to try something else ?
dx'd with pancolitis 12/21/03
current supplements:vit D, cal/mag, Psyllium Seed powder/Heather's Acacia fiber/ L-Glutamine/Hemp powder slurry 1x/week - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with !

Dikid
Veteran Member


Date Joined May 2015
Total Posts : 2233
   Posted 1/1/2017 2:09 PM (GMT -6)   
Hey,

Thanks for your responses
imagardner: undetected infection- possibly but WBCs were normal-low, could be masked by azathioprine causing lower WBC counts
def not C. diff cuz some BMs are formed
Dont live where lyme disease is prevalent but always possible

ipoop:still having 4-6 BMs/day but they usually have some form to them
the scope showed no active inflammation but the mucosa was not normal (altered vascular pattern, discoloration, pseudopolyps...)

soynomore: could be the infliximab but those side effects are not too common
actually, my doc just told me to hold my imuran for a week to see if that helps, seems nausea/loss of appetite are more common with that

argh...this nausea is crippling
so confused and lost
21 year old female
Originally diagnosed with severe UC on 4/27/15
Diagnosis switched to Crohn's 6/16
Remicade 10 mg/kg
Imuran 50 mg
zofran as needed

Please excuse typos. Usually post from my phone.

cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 1495
   Posted 1/1/2017 3:54 PM (GMT -6)   
One thing that comes to mind is thrush or yeast over growth. It can mimic some flare symptoms and for me nausea and my appetite are the worst symptoms.

When I had yeast over growth it didn't matter what it was I would put food in my mouth and was so nauseous could barely swallow.

Just a thought since your scopes didn't show inflammation
Diagnosed with Crohn's 1998 and PSC 2015

Surgery 10/15 - colon resection with loop ileostomy
Surgery 12/15 - ostomy closure-disease came right back
Surgery 3/16 - total proctocolectomy - so happy to have my stoma back!

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 810
   Posted 1/2/2017 5:48 PM (GMT -6)   
Dikid-- I'm so sorry you are having such trouble. Nausea is so debilitating. Have you tried MJ? You're brain is almost finished developing so you should be ok for it.

10lbs is a lot. Are you able to keep anything down? Drink broth etc?

As far as fevers; I think they can be associated with crohns but am unsure. Just remember my dad having high fevers with his severe tummy pain and constipation.

I hope you are feeling a bit better today.
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
Flaring 3 years. Currently dealing with fistulas including rectal/vag and vulvodynia caused by IBD (taking 3000mg gabapentin)
started Humira Sept 1, 2016. 80mg weekly
started Hyperbaric Oxygen on Dec 13, 2016

ewafromwarsaw
Veteran Member


Date Joined Jun 2013
Total Posts : 1212
   Posted 1/2/2017 5:51 PM (GMT -6)   
i'd vote for meds side effects as they often come with delay. Try slippery elm bark, when i feel vaguely nauseated i drink carbonated (strongly carbonated) mineral water with some freshly squeezed lemon juice
Ewa, 24 yrs old from Warsaw
Left-sided colitis, diagnosed in September 2012
Current meds: 2x2 Asamax (500 mg) and Salofalk enemas (twice a week)
Mutaflor or VSL#3

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1860
   Posted 1/2/2017 6:01 PM (GMT -6)   
Sorry to hear your not doing great. 10 lbs is a lot to lose in a month. I also tend to think it could be the Meds, and so maybe dropping Imuran for a while will give you some answers.
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Had home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Taking Methotrexate 10mg weekly and on 10g of Prednisone at the moment, hoping it will work for me.

Dikid
Veteran Member


Date Joined May 2015
Total Posts : 2233
   Posted 1/10/2017 11:18 PM (GMT -6)   
Hey its been bout 2 weeks off of the imuran and its hard to say if I have improved or not
doc is suggesting me add a very low dose of an antidepressant called elavil. It is used for different neuropathy and nerve pain
have you ever heard of this being used for nausea
im assuming this is IBS and not IBD
i know that elavil is used in some IBS patients
whadya think?
thanks guys!!!
22 year old female
Originally diagnosed with severe UC on 4/27/15
Diagnosis switched to Crohn's 6/16
Remicade 10 mg/kg
Imuran 50 mg
Omeprazole 40 mg
zofran as needed

Please excuse typos. Usually post from my phone.
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