Severe heartburn, worsening flare

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U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 857
   Posted 10/9/2017 12:21 PM (GMT -6)   
I'm so ill & weak. Heartburn /indigestion is so severe it's like glass. I've tried everything. Barely able to sip water.

I had 1 formed bm then 2 with just passing m.

Feeling so defeated.
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again. 4 years of flaring is tiresome.

minnietoty
Veteran Member


Date Joined Dec 2010
Total Posts : 2739
   Posted 10/9/2017 1:46 PM (GMT -6)   
So sorry, UB Tough. You have already got a lot on your plate and are not in need of getting this, too. What did you try? Did you try PPIs? Gaviscon Advance?
GERD, perianal fistula, CD, IBS, persistent mouth ulcers & fissures
___________________
Meds: Remicade, Cortiment, Nexium, Imuran, colifoam, monthly B12 inj.
Pred 40 mg from Oct. 2010 till Jan. 2012
Previous: Mesalamine tablets & supp.
Failed:Azathioprine (generic), Methotrexate

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 679
   Posted 10/9/2017 2:36 PM (GMT -6)   
UB,

I am so sorry you are going thru this. I thought...hoped...you were feeling better and the Stelera was helping....or maybe it is helping the bowel portion and not the rest....

But if you are passing just mucus it could be the Crohns...or an infection. Do you Have a fever?

Have you called your GI? Could this be gerd? Have they ran any tests? What did they say and what have you tried?

I don't mean to sound like a drill sergeant barking questions....I just worry about you....and I know that sometimes I probably drive you, and others, up the wall. I just can't help myself in believing that if we put our heads together maybe someone will have that one thought that will make things easier....better.

Sometimes we all feel defeated. I know how you feel....well with the defeated portion. The Crohns....everyone's journey is so different that although we can empathize we may not truly know what the other person is going through. It is very hard to battle this disease every day and to get your *** handed to you...or to endure those sneak attacks that get us just when things are starting to get better. I don't have any magic words to make it better so I am just sending you healing thoughts...

Hope you feel better soon.

Clo

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 1001
   Posted 10/9/2017 4:19 PM (GMT -6)   
I'm so sorry as well, you are having such a rough time. I've had reflux that gets to that point and it is horrific. I'm dealing with a tough case of it now too. Have u had an upper endoscopy recently and any ppi's as mentioned above? I know to get mine to be bearable it's taken months and a double dose of a strong PPI, even then I have to be very restrictive and I still have mild discomfort after I eat. I'm sorry, I wish I had better advice.

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 857
   Posted 10/12/2017 2:51 PM (GMT -6)   
Hi All,

Thank you for the messages. I'm sorry for the delayed response, especially to you Clo as I know you are worried. It's been quite the week. I wasn't able to attend Thanksgiving festivities because of the heartburn. The indigestion was so bad I was burping ike a truck driver! The pain was so bad I can't describe it. Then I started vomiting. On top of this the weakness I felt was so intense that tears were just streaming down my face. I think the weakness is from the IVIG. Perhaps it's interacting with the Stelara. My bowel is ok, although I'm hesitiant to say anything really. 3 times a day, softly formed but the urgency is terrible....4 accidents, all on my bathroom rug!!

I was trying everything....pepto, tecta, ranatidine (sp?), peppermint...all at once. I wasn't able to eat or even sip water for 3 days. It's better now but still an issue. I'm eating a potatoe and a little chicken in the afternoon plus sipping ensure, No way I could handle breakfast! I haven't had any tests as I don't see my GI until Nov. I asked for an endo when I was on my extended hospital stay but I was refused; even though he was doing a colonoscopy at the same time. I hope my crohns hasn't spread to the esophagus.

And as if this wasn't enough, my dog suddenly became very sick with pancreatitis and possible cushing disease....plus my car broke down so I'm here at the mechanics. UGH. Life!

Minnie---if I remember correctly you are writing your phd thesis. How is is going?
Clo-- how are you doing?
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again. 4 years of flaring is tiresome.

lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1812
   Posted 10/12/2017 6:03 PM (GMT -6)   
Reflux is the worst! I have protonix and xantac and I still have issues, sometimes I can't even bend over without it coming up my throat. My only advice is watch what you eat and drink, prop yourself up at night to sleep and stay on your meds.

I hope your doggie is ok, it's awful when they are sick and can't tell you what is wrong. Almost worse when it seems to be mental with them. We have a german shepherd that was a rescue she is obsessed with DH because he found her and we think she thought he left her the other evening when he took a short walk alone. She was a mess for a couple of days, thinking it brought back memory of who ever abandoned her poor thing.

Hugs for you and your pup, hang in there.
DX with CD Aug. 1982
Gerd secondary to crohns
Entyvio
Methotrexate
Monthly b-12 injections
40 mg Protonix / twice daily
Zoloft
xanax
folic acid

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 1001
   Posted 10/12/2017 6:28 PM (GMT -6)   
How horrible! Sending lots of hugs and love your way. Definitely see if you can get protonix. I believe I read that peppermint may make GERD worse.
I can relate. My cat is dying of IBD and pancreatitis and now possibly lymphoma since none of the medications are working. Still has a strong will to survive but keeps getting worse. It's so hard.

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 857
   Posted 10/17/2017 4:04 PM (GMT -6)   
Thank you everyone. The heartburn has decreased quite a bit AND my bowel is doing much better. Back to 2-3 times a day. I was well enough to go pumpkin/apple picking but took 1 imodium as insurance. Urgency is better but still wouldn't have enough time to find somewhere.

Would you believe that an hour after realizing I haven't had butt pressure pain from fistulas in 3 days, I'm now experiencing that?!!

Sorry about your pets Lamb and Lab (coincidental names? lol). My girl has bounced back very nicely but she has to go for tests on Thursday; then I guess she'll start some sort of treatment. It's really hard when they are sick.
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again. 4 years of flaring is tiresome.
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