Does anyone else have gastroparesis and Crohn's?

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Mazelle343
Regular Member


Date Joined Oct 2010
Total Posts : 43
   Posted 11/3/2010 1:50 PM (GMT -7)   
What has your experience been like with both?
 
 
I was diagnosed with Gastroparesis first.. because vomiting was my first / most serious symptom.  I took Reglan for a while but couldn't handle it.. it made me a zombie.  I was put on Domeperidon next, which has been great, no noticable side effects woo hoo! 
 
I asked about 2 weeks ago to stop taking my domperidone because I am not longer vomiting and haven't vomited for a long time.. the doctor ok'd it and told me to let me know if I had any problems.  All I have really noticed being off of it is that my 'bowel cycle' if you will has changed and then this past week I started hurting on my right side.    I talked with the doctor and he believes me being off my domperidone has caused me to start hurting, so I've started taking it again today.   I hope he's right because the "ache" was starting to make me nervous.    Has anyone else had an experience like this?
 
 

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8384
   Posted 11/4/2010 7:08 AM (GMT -7)   
I've never been diagnosed with gastroparesis, but I have felt that my bowels are slow....some people here talk about their Crohn's in terms of constipation, which I would agree applies to me, too, except I haven't had a hard stool since 1999, LOL. It does seem that I'll have a few days of no bowel movements, and then a day or two of multiple bms, mostly soft, sometime diarrhea.

So is that gastroparesis? I'm not a vomiter unless I'm pregnant, ha.

Anyway, recently I've had pain in the upper right quadrant. I started noticing it a few years ago when I'd had a few days of no bowel movements. More recently it was happening every day, and sometimes all day long. I believe I have a stricture somewhere, maybe near the duodenum (on my last scope I had gastritis and a few years ago I had an esophageal stricture). Anyway, it seems to be getting better on its own.

So like you I have had pain on the right side. I haven't taken any meds for this other than my regular 5-ASAs etc. that you can see in my signature. I had considered asking my GI to run a SBFT but the last time I did that (~8 years?) I was miserable drinking all that barium, and I couldn't see what knowing about a stricture would do for me other than possible get me on prednisone. I guess I would have made that phone call (and might still) if I hadn't started feeling better.

I am keeping my meals small and my liquids up and hoping to continue improving. I would not have described my pain as severe but then everyone's pain threshold is different - I would say at its worst the pain was a 3-4 on a scale of 10.

Hope this is helpful.
*******************
48 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), mesalamine enema as needed.

Mazelle343
Regular Member


Date Joined Oct 2010
Total Posts : 43
   Posted 11/4/2010 7:18 AM (GMT -7)   
Gastroparesis is when your stomach is 'frozen' or empties VERY slowly. Its typically very common in people with diabetes but I luckily am not a diabetic... just have the slow slow stomach. One way it is diagnosed is by a gastric emptying scan -- you eat a radio active egg or oatmeal and then you lay on a table under an xray for as long as it takes for your stomach to empty or you take an x-ray picture of your stomach in timed increments.


Today after two doses of domperidone I'm not noticing any 'ache' on my right side... I'm thinking he may have been right about needing to be on the medicine.

Post Edited (Mazelle343) : 11/4/2010 8:21:17 AM (GMT-6)


gobbler
Regular Member


Date Joined Aug 2010
Total Posts : 24
   Posted 11/5/2010 7:18 AM (GMT -7)   
i also have been diagionsed with both its great my gi doc cant understand it doesnt know why so i get to go to clevland clinic this month and see if they can explain it
 

kelli_C
Regular Member


Date Joined Jul 2009
Total Posts : 130
   Posted 11/5/2010 9:14 PM (GMT -7)   
I don't have Gastroparesis, but seems to make logical sense that if you were on meds and feeling okay, then off em and you start hurting again, maybe they were keeping you from hurting all along.

Ugh - gotta say, the thought of eating a radioactive egg is not at ALL appealing! I mean, I realize that an emptying test isn't the same thing as a 5-star restaurant, but ICK!!
UC dx in 1998 (age 18) - proctosigmoiditis - Allergic to Sulfa
1998-2009 Asacol 2/2X daily - very sketchy about taking it...pretty much drug-free for a long time.
Jan 2006 - C-Scope - UC; possible Crohn's
Aug 2009 - flare - 4 Apriso daily - still sketchy
August 2010 - Flare - taking Apriso religiously
Been good about taking Apriso
8/10 - Doc dx me with Crohn's instead of UC due to ileum involvment

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 11/5/2010 11:49 PM (GMT -7)   
I have eaten some eggs at Denny's that may have been radioactive but would be a little hesitant to do it on purpose. :) My brother-in-law's little sister has gastroparesis and has really struggled from it. She has been on a feeding tube for almost a year and is now saving up enough money to have a stomach pacemaker surgically placed in her. Are you familiar with the pacemaker procedure? He has been doing several charity auctions, marathons, and fundraisor dinners to help raise money for the surgery since many insurance companies will not cover it because it is still fairly new. They actually were testing her for Crohn's disease when she was diagnosed with Gastroparesis, so it does not surprise me that you could have both. It is kinda different to think that you stomach doesn't want to let the food go while your intestines can't wait to get it out. It reminds me of one of the really tall waterslides that starts really slow and flat then it drops straight down about 100 ft.

Mazelle343
Regular Member


Date Joined Oct 2010
Total Posts : 43
   Posted 11/8/2010 8:48 AM (GMT -7)   
It's very common in diabetics, is your brother-in-law's sister a diabetic?

A coworkers dad surgery to relocate the exit of his stomach so that it pointed straight down instead of to the right side, it helped him immensely.

I've never head of the stomach pacemaker.. I really hope it helps her! Vomiting everyday is miserable!
Diagnosed with Crohn's Disease 2009
Ileocecal Resection June 2010

DripDroop
New Member


Date Joined Nov 2017
Total Posts : 1
   Posted 11/4/2017 11:25 PM (GMT -7)   
I was diagnosed with idiopathic gastroparesis when I was 20, two years after I lost my gall bladder and about four years after I started showing symptoms. I was apart of a case study for it, and placed on Amitriptyline which I had massively bad reactions to, as well at the four other medications my doctor put me on to try to help control the symptoms. After I stoped taking Amitriptyline it took my body about a year to readjust before things started to level out a little. I considered the surgery for the pacemaker, but I am extremely small, and I like to do extreme sports so it didn't fit into my lifestyle. I am now 24, and a week ago I was sent to the ER with extreme abdominal pain and uncontrolled vomiting. It felt like when I was taken to the ER for my gall bladder, it felt like something was breaking inside me again. They did a CT Scan and found my lymph nodes were swollen and there was a thickening in my colon. So they are sending me back to the GI that originally diagnosed me to get a colonoscopy to see if it is an IBD.

Over this week I have had almost no appetite and what I can eat is almost limited to broth and ginger ale, and I have been having a lot of pain in my upper left abdomen, across the bottom of my abdomen focused on the center, and across my lower back. I could not say if it was relative to cramping, my body is not really good at translating pain types and amounts, all I know is that it hurts and I can't lay flat on my back in bed. Does this sound like something from Chron's??

The docs haven't been able to tell me anything about my gastroparesis - I am a complete phanomon to them, and they seem to be afraid to try anything with me that doesn't include me taking almost a month off of work to be studied. This will also be my first colonoscopy, they all wondered how I didn't have a bowl issue with my stomach, but none of them sent me for a test... Guess something has to break before they can get approval???? Besides my guts I am healthy, no other issues.

On a slightly lighter note the radioactive eggs are not the worst part of that meal. Lol. At least in my opinion. The water was always the hardest. Following eggs and toast with water is just not appetizing. Also too, there are two ways to test your emptying: one is laying down for 90 minutes (if I remember correctly) and they video tape your stomach, and the other is standing where they take pictures of your stomach every 30 minutes for two hours. I have had both, and though I was told the standing one is a little more realistic (who eats a meal and immediately lays down for an hour and a half?), the laying down one I liked better because I got to watch the monitor with my stomach contents as they traveled.

scifigal2k
Veteran Member


Date Joined May 2012
Total Posts : 3294
   Posted 11/5/2017 5:02 AM (GMT -7)   
Has anyone suggested domperidone?
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

Bucko
Regular Member


Date Joined Nov 2015
Total Posts : 371
   Posted 11/5/2017 5:50 PM (GMT -7)   
Tsitodawg---finally to hear that someone else knows about a stomach pacemaker. My son was born with trachea/larngo malacia, GERD, gastroparisis, slow intestinal motility. He takes 2 to 6 capsule of Miralax a day and exlax on the weekends and still only poops once every 7 to 10 days. At age 3 he had a nissen to stop severe reflux and that resulted in him having a gtube for almost 5 years cause he could no longer swallow without aspirating which led to pneumonia. He is now 11. The Drs plan to put a stomach/intestinal pacemaker when he is 12. They have never tested him for Crohn's tho.
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