Share Facebook
Crohn's Disease Forum » Your Story » Indigestion with Crohn's?


07-20-2017, 05:20 PM   #1
Missmissie
 
Join Date: Jul 2017
Location: tacoma, Washington

My Support Groups:
Indigestion with Crohn's?

Hello all-

I have been out of the hospital for almost two weeks now, everyday is a struggle but now it seems something new is happening and I was curious if anyone else experienced this and what did you do about it?

I have severe Crohn's with colitis and I was doing "ok" as far as eating was going, but four days ago I developed a bad bad acid reflux situation which I've never had before. GI said it's ok to take Prilosec so I am and it seems the acid reflux has subsided but now I have a huge knot right in the middle of my upper stomach and I dry heave, or feel like I need to vomit and NO food sounds good and when I do try to eat it's like it doesn't want to pass that knotted area...

I'm scared because I know I have to eat but now I'm eating VERY little yet again because of this new development. I'm so weak and now I feel like I'm getting weaker...all I want to do is eat. On another note, the severe lower abdominal pain improved and my bm's also improved. So what the heck???

Any insight would be lovely. I don't want to go back to the hospital for a PICC line or feeding tube...that just opens up another door for something to go wrong.

I do have a call into my GI too, but usually they just say it'll take time.

Thanks community, reading everyone's stories has been helpful.
07-20-2017, 06:34 PM   #2
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Maybe you need a second opinion.
07-20-2017, 07:26 PM   #3
Missmissie
 
Join Date: Jul 2017
Location: tacoma, Washington

My Support Groups:
I don't know where else to go...I'm currently with the largest most complete group in the pnw... :/
07-20-2017, 08:06 PM   #4
Jabee
Senior Member
 
Jabee's Avatar
 
Join Date: Oct 2016
Location: Massachusetts

My Support Groups:
Are you currently taking oral steroids? After my last hospitalization the prednisone began giving me serious stomach pain. They gave me sucralfate which helped a lot. Also, did they check your pancreatic enzymes? I can't remember what you are taking now but I have crohn's in my small intestine and my pancreatic enzymes are always elevated during a flare. That can also cause upper stomach pain. I hope your GI has some ideas for you and that you start to feel better soon. Even though it is another thing to worry about (as you said), doing EEN can really help get your flare under control. I remember you were having a really hard time when you started eating again in the hospital. Better EEN now than further weeks in the hospital. Just a thought.
07-21-2017, 12:42 PM   #5
Missmissie
 
Join Date: Jul 2017
Location: tacoma, Washington

My Support Groups:
Are you currently taking oral steroids? After my last hospitalization the prednisone began giving me serious stomach pain. They gave me sucralfate which helped a lot. Also, did they check your pancreatic enzymes? I can't remember what you are taking now but I have crohn's in my small intestine and my pancreatic enzymes are always elevated during a flare. That can also cause upper stomach pain. I hope your GI has some ideas for you and that you start to feel better soon. Even though it is another thing to worry about (as you said), doing EEN can really help get your flare under control. I remember you were having a really hard time when you started eating again in the hospital. Better EEN now than further weeks in the hospital. Just a thought.
What is EEN?
07-21-2017, 03:26 PM   #6
Guerrero
Senior Member
 
Join Date: May 2017

My Support Groups:
Are you currently taking oral steroids? After my last hospitalization the prednisone began giving me serious stomach pain. They gave me sucralfate which helped a lot. Also, did they check your pancreatic enzymes? I can't remember what you are taking now but I have crohn's in my small intestine and my pancreatic enzymes are always elevated during a flare. That can also cause upper stomach pain. I hope your GI has some ideas for you and that you start to feel better soon. Even though it is another thing to worry about (as you said), doing EEN can really help get your flare under control. I remember you were having a really hard time when you started eating again in the hospital. Better EEN now than further weeks in the hospital. Just a thought.
interesting,,, how do they check your pancreatic enzymes?

i'm having stomach pain after a cycle of prednisone too. They forgot to give me medication to protect my stomach... been struggling with pain and nausea for the last weeks
07-21-2017, 03:38 PM   #7
Jabee
Senior Member
 
Jabee's Avatar
 
Join Date: Oct 2016
Location: Massachusetts

My Support Groups:
I'm so sorry! EEN is Enteral Nutrition. They use it a lot to get children with IBD into remission, in conjunction with medication. With enteral nutrition a broken down formula is delivered to the GI system via a naso-gastric (NG) or sometimes an implanted NJ (naso-jejunal tube). There is at least one person on the forum who is on TPN (total parenteral nutrition) which bypasses the GI system completely by delivering nutrients directly into the blood via a port or PICC line (peripherally inserted central line). I have also seen comments on the forum by Jon Reiner, author of The Man Who Couldn't Eat, a noted food writer who was fed intravenously for a year after severe complications from crohn's.

I am absolutely not trying to scare you! Other forum members have stuck to drinking special formula after a particularly bad flare. I'll tag some people who know far more about this stuff than I do. I just thought it was something you might consider since your flare is so bad.

Tagging Maya142, my little penguin, Cat-a-Tonic. Little Missh is on TPN right now, I think.

Last edited by Jabee; 07-21-2017 at 09:26 PM.
07-21-2017, 05:06 PM   #8
Maya142
Forum Monitor
 
Maya142's Avatar
My daughter has been on formula for quite a while. She has not done EEN (100% formula) but has done supplemental EN - where she eats as much as she can, and gets the rest of her calories from formula. When she was at her worst, she'd eat about 15% of her calories and get the rest from formula.

You can either use OTC, polymeric formulas like Boost or Ensure or try more broken down ones. Some people do fine with polymeric formulas and to be honest, they are the most palatable.

For others, including my daughter, a semi-elemental/elemental formula was needed. For kids, Peptamen Jr. or Pediasure Peptide are used. They are semi-elemental and definitely don't taste great. But my kiddo got used to them. Then there are elemental formulas which are broken down into amino acids - very hard to drink, but some people manage. My daughter is on Neocate but she gets it through a feeding tube.

We were very hesitant to go down the feeding tube route. It sounds a lot worse than it is though. My daughter was a teenager and she was taught to insert an NG tube every night, get her formula overnight, while hooked up to a pump and then remove it in the morning before school! It worked very well for her and she went from being severely malnourished, exhausted and miserable to gaining weight and feeling MUCH better.

For kids, EEN is used to induce remission and is also used to help maintain it. Kids usually do 6-8 weeks of 100% formula to induce remission and then slowly add back food. They stay on formula because it helps with weight gain and growth.

As for reflux - my daughter has really bad reflux, which is part of her Gastroparesis and needs multiple meds to manage it - a PPI, Pepcid, Maalox as needed and Carafate. It also took some trial and error to find a PPI that worked well for her.

The other thing you may want to look into is actually Gastroparesis. It's a motility disorder and can be caused by Crohn's (though generally Crohn's in the duodenum or stomach). Symptoms are being full after just a few bites, nausea, vomiting, stomach pain, weight loss, inability to eat etc.

My daughter has it and she had many of the symptoms you mention. Motility medication, diet changes and the feeding tube (she now has a more permanent tube that was surgically placed in her small bowel) helped a lot.
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
07-21-2017, 09:24 PM   #9
Jabee
Senior Member
 
Jabee's Avatar
 
Join Date: Oct 2016
Location: Massachusetts

My Support Groups:
Guerrero:

They check pancreatic enzymes with a simple blood test. They always check mine if I am at the ER with a flare. With me they think they are elevated because the crohn's is in my small intestine; the inflammation in the duodenum affects my pancreas.
07-21-2017, 10:40 PM   #10
aweitzm1
 
aweitzm1's Avatar
 
Join Date: Jul 2017
Location: New York, New York

My Support Groups:
I am having the same issue right now. It hurts when I don't eat and when I finish eating the pain is back. Suck buckets
__________________
Dx 7/2017
Humira 8/2017
Effexor 4/2017
Ambilify 6/2017
Klonopin 2 mg as needed 2/2015
Liquid Tumeric
Calcium 7/2017
B12 7/2017
07-22-2017, 12:27 AM   #11
sparkyh
 
Join Date: Mar 2015
Location: Barrow-in-Furness, United Kingdom
Yes I have severe reflux at times due to gastroparesis, it actually can get get quite scary. I take nexium & domperidone, have also had erythromycin for it. I use Gaviscon chewable tablets after meals (2 or 3) seems to help me. Tried digestive enzymes for a time which helped for a while but then seemed to stop working. I also use pepto bismol when really bad. When drinking water, try to have warm water, cold drinks can make reflux worse. Good luck hope you find some relief

07-22-2017, 03:44 PM   #12
Missmissie
 
Join Date: Jul 2017
Location: tacoma, Washington

My Support Groups:
Are you currently taking oral steroids? After my last hospitalization the prednisone began giving me serious stomach pain. They gave me sucralfate which helped a lot. Also, did they check your pancreatic enzymes? I can't remember what you are taking now but I have crohn's in my small intestine and my pancreatic enzymes are always elevated during a flare. That can also cause upper stomach pain. I hope your GI has some ideas for you and that you start to feel better soon. Even though it is another thing to worry about (as you said), doing EEN can really help get your flare under control. I remember you were having a really hard time when you started eating again in the hospital. Better EEN now than further weeks in the hospital. Just a thought.
I am currently taking oral steroids. I thought this could be due to that too, just too much meds on a stomach that doesn't have much in it...

I know they have done a lot of blood work so I'm sure that those values were checked.
07-22-2017, 03:47 PM   #13
Missmissie
 
Join Date: Jul 2017
Location: tacoma, Washington

My Support Groups:
I'm so sorry! EEN is Enteral Nutrition. They use it a lot to get children with IBD into remission, in conjunction with medication. With enteral nutrition a broken down formula is delivered to the GI system via a naso-gastric (NG) or sometimes an implanted NJ (naso-jejunal tube). There is at least one person on the forum who is on TPN (total parenteral nutrition) which bypasses the GI system completely by delivering nutrients directly into the blood via a port or PICC line (peripherally inserted central line). I have also seen comments on the forum by Jon Reiner, author of The Man Who Couldn't Eat, a noted food writer who was fed intravenously for a year after severe complications from crohn's.

I am absolutely not trying to scare you! Other forum members have stuck to drinking special formula after a particularly bad flare. I'll tag some people who know far more about this stuff than I do. I just thought it was something you might consider since your flare is so bad.

Tagging Maya142, my little penguin, Cat-a-Tonic. Little Missh is on TPN right now, I think.
You are totally good, thank you very much. I should look into the EEN...they did want to do a PICC tube but I decided against it when I was last in the hospital, I just felt that opened up a whole knew door of things to go wrong so I wanted to see if I could eat on my own...which I could up until a few days ago....sigh! Thanks for your input, I really appreciate it!
07-22-2017, 03:49 PM   #14
Missmissie
 
Join Date: Jul 2017
Location: tacoma, Washington

My Support Groups:
Yes I have severe reflux at times due to gastroparesis, it actually can get get quite scary. I take nexium & domperidone, have also had erythromycin for it. I use Gaviscon chewable tablets after meals (2 or 3) seems to help me. Tried digestive enzymes for a time which helped for a while but then seemed to stop working. I also use pepto bismol when really bad. When drinking water, try to have warm water, cold drinks can make reflux worse. Good luck hope you find some relief
I had to go to the hospital, I was so weak. They of course gave me fluids which was great but also Pantoprazole, prochlorperazine and ondansetron and so far it has helped me today, I was able to eat and not gagging all day...and yea, I love my cold drinks...darn it! It does make it worse!
07-22-2017, 03:51 PM   #15
Missmissie
 
Join Date: Jul 2017
Location: tacoma, Washington

My Support Groups:
My daughter has been on formula for quite a while. She has not done EEN (100% formula) but has done supplemental EN - where she eats as much as she can, and gets the rest of her calories from formula. When she was at her worst, she'd eat about 15% of her calories and get the rest from formula.

You can either use OTC, polymeric formulas like Boost or Ensure or try more broken down ones. Some people do fine with polymeric formulas and to be honest, they are the most palatable.

For others, including my daughter, a semi-elemental/elemental formula was needed. For kids, Peptamen Jr. or Pediasure Peptide are used. They are semi-elemental and definitely don't taste great. But my kiddo got used to them. Then there are elemental formulas which are broken down into amino acids - very hard to drink, but some people manage. My daughter is on Neocate but she gets it through a feeding tube.

We were very hesitant to go down the feeding tube route. It sounds a lot worse than it is though. My daughter was a teenager and she was taught to insert an NG tube every night, get her formula overnight, while hooked up to a pump and then remove it in the morning before school! It worked very well for her and she went from being severely malnourished, exhausted and miserable to gaining weight and feeling MUCH better.

For kids, EEN is used to induce remission and is also used to help maintain it. Kids usually do 6-8 weeks of 100% formula to induce remission and then slowly add back food. They stay on formula because it helps with weight gain and growth.

As for reflux - my daughter has really bad reflux, which is part of her Gastroparesis and needs multiple meds to manage it - a PPI, Pepcid, Maalox as needed and Carafate. It also took some trial and error to find a PPI that worked well for her.

The other thing you may want to look into is actually Gastroparesis. It's a motility disorder and can be caused by Crohn's (though generally Crohn's in the duodenum or stomach). Symptoms are being full after just a few bites, nausea, vomiting, stomach pain, weight loss, inability to eat etc.

My daughter has it and she had many of the symptoms you mention. Motility medication, diet changes and the feeding tube (she now has a more permanent tube that was surgically placed in her small bowel) helped a lot.
Oh man, your poor daughter! I wouldn't wish this on anyone especially a kiddo! Thank you for the info...it does make sense!
07-22-2017, 03:53 PM   #16
Missmissie
 
Join Date: Jul 2017
Location: tacoma, Washington

My Support Groups:
I did finally have to end up going back to the ER yesterday, I was so weak I couldn't even speak. I got fluids which of course helped but also they gave me pantoprazole, prochlorperazine, and ondansetron and so far that seems to be helping! I was able to eat and not gag all day! I have an endoscopy now for Monday. We will see what that shows!

Thank you for everyones input, I so appreciate it and so interesting how every story is so different!
07-26-2017, 05:38 PM   #17
Missmissie
 
Join Date: Jul 2017
Location: tacoma, Washington

My Support Groups:
Turns out my endoscopy showed candidiasis through out my entire esophagus...

No wonder I felt terrible.
07-26-2017, 06:10 PM   #18
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
I hope they can get you feeling better soon.
07-26-2017, 07:18 PM   #19
Missmissie
 
Join Date: Jul 2017
Location: tacoma, Washington

My Support Groups:
Thanks Ron

I am Feeling a bit better but the whole eating thing is really a turn off to me right now and I'm struggling with that. The last thing needed is developing an eating disorder over this flare :/ any suggestions?

Also, I live in Tacoma, WA and I can't seem to find any support groups or anything other than in Seattle. Would you have and suggestions on where I might be able to dig deeper?

Thanks
07-26-2017, 07:43 PM   #20
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Maybe you should try some protein shakes.
07-26-2017, 08:13 PM   #21
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Hi Miss,

I'm happy for you that the problem is now figured out. I'm not sure you can dig much deeper than this forum. You can sure try. Maybe things have changed, but I looked everywhere for support and answers. This was the place I liked best.


Best regards,

Chris
07-26-2017, 08:26 PM   #22
Jabee
Senior Member
 
Jabee's Avatar
 
Join Date: Oct 2016
Location: Massachusetts

My Support Groups:
Gosh. Candidiasis throughout your esophagus? That sounds awful. With respect to support groups, have you called your local hospital or asked your GI's office? They might know of a support group closer to you. How are they treating the candidiasis? I hope you get some relief soon.
07-26-2017, 10:22 PM   #23
Missmissie
 
Join Date: Jul 2017
Location: tacoma, Washington

My Support Groups:
Gosh. Candidiasis throughout your esophagus? That sounds awful. With respect to support groups, have you called your local hospital or asked your GI's office? They might know of a support group closer to you. How are they treating the candidiasis? I hope you get some relief soon.
That's a good idea, I'll ask them. And they gave me fluconazole tablets for it. Seemed to have helped already. Thank gawd
07-27-2017, 12:44 AM   #24
Jabee
Senior Member
 
Jabee's Avatar
 
Join Date: Oct 2016
Location: Massachusetts

My Support Groups:
Did your doctors give you any idea about why you have candidiasis? I'm experiencing some severe dizziness and thiamine seems to alleviate it (I've tried exercises, fluids, meclizine, etc). I was just doing some reading on thiamine and came across a mention of esophageal candidiasis as one problem resulting from thiamine deficiency. Just a thought.
Reply

Crohn's Disease Forum » Your Story » Indigestion with Crohn's?
Thread Tools


All times are GMT -5. The time now is 07:43 PM.
Copyright 2006-2017 Crohnsforum.com