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01-21-2014, 06:54 PM   #61
kimmidwife
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Couldn't find the digest zen but got some other digestive enzymes that the woman at whole foods said is the best. She will try it tonight with dinner. Will let you know how it goes.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
01-21-2014, 07:35 PM   #62
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Hope it helps out!!!!
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Current Meds: Pentasa 500mg 2 pills 2x a day, Lomotil and Zofran as needed and started 4.5mg LDN June 6, 2014!
02-05-2014, 07:25 PM   #63
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Still no improvement.
Has anyone tried a gastric pacemaker?
02-05-2014, 07:30 PM   #64
Stardust_Fiddle
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I've heard of it. They usually only do it once all standard drug treatments have failed. Here's a link: http://www.medtronic.com/patients/ga...ce/what-is-it/
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Conditions: gastroduodenal Crohn's disease; chronic SIBO; bile reflux; gastroparesis; intestinal dysmotility; hiatal hernia; hypogammaglobulinemia; IBS; chronic migraine; fibromyalgia; sensory processing sensitivity; Raynaud's; congenital cataracts
Current treatments: Humira biweekly, Azathioprine 50 mg once daily, Xifaxan 550 mg daily on alternating weeks, Omeprazole 20 mg, Cymbalta (for pain), VSL#3 Probiotic, Iberogast, Remeron, Zofran; permanent TPN
02-05-2014, 08:50 PM   #65
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Thanks! We are going to look into going to Ohio to the pediatric motility clinic there and see what they can offer.
02-05-2014, 08:52 PM   #66
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I hope they are able to help! Keep us updated if you can!
02-06-2014, 06:31 AM   #67
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Still no improvement.
Has anyone tried a gastric pacemaker?
I've heard of this, I really want to try it! I just haven't found the right doctor or surgeon to discuss this with yet, and have been a bit overwhelmed dealing with surgeries at the other end of my digestive tract (I have a new permanent ileostomy). From what I've read, a gastric pacemaker has sounded like one thing that I feel could really help me.

I'd be really interested to know if you discover anymore about this!
02-06-2014, 02:16 PM   #68
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Good luck! Hope this finally works out.
02-06-2014, 10:48 PM   #69
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Quick question, do any of you experience facial flushing after eating?
02-07-2014, 05:44 AM   #70
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Quick question, do any of you experience facial flushing after eating?
I do sometimes get hot flushes after or during eating. I don't go red - I've never blushed much in any circumstances - but I definitely feel my temperature goes up. I've thought it may be due to taking amitriptyline, as it's listed as a side effect of that, but I do find I get warmer from eating than from any other activity.

I also get absolutely exhausted after eating. When I'm actually in the middle of eating it wakes me up a bit and I feel like I get more energy, then as soon as I finish I get desperately tired. In fact I took to eating last thing at night because it was so guaranteed to send me off to sleep, and I almost always need at least one nap a day, either directly after breakfast or after lunch. This generally isn't recommended with gastroparesis, especially if you have reflux, because lying down allows food to come up easier, but I get so desperately tired it's unavoidable, and I seem to get reflux even when I'm upright anyway. I know it's fairly common among healthy people to sometimes feel like napping after a big meal - the classic example being falling asleep after Christmas dinner or after a Sunday roast (apparently turkey has some sleep-inducing properties) - but for me it's like the energy required for digestion is just enormous.
02-07-2014, 11:04 AM   #71
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I do sometimes get hot flushes after or during eating. I don't go red - I've never blushed much in any circumstances - but I definitely feel my temperature goes up. I've thought it may be due to taking amitriptyline, as it's listed as a side effect of that, but I do find I get warmer from eating than from any other activity.

I also get absolutely exhausted after eating. When I'm actually in the middle of eating it wakes me up a bit and I feel like I get more energy, then as soon as I finish I get desperately tired. In fact I took to eating last thing at night because it was so guaranteed to send me off to sleep, and I almost always need at least one nap a day, either directly after breakfast or after lunch. This generally isn't recommended with gastroparesis, especially if you have reflux, because lying down allows food to come up easier, but I get so desperately tired it's unavoidable, and I seem to get reflux even when I'm upright anyway. I know it's fairly common among healthy people to sometimes feel like napping after a big meal - the classic example being falling asleep after Christmas dinner or after a Sunday roast (apparently turkey has some sleep-inducing properties) - but for me it's like the energy required for digestion is just enormous.
I'm much the same. Eating tends to raise my body temperature, and it makes me so exhausted. That, combined with the pain after eating, makes me nap or at least try to do so. I sometimes get a jolt of energy mid-way through a "meal" too, but afterward I feel absolutely drained. I figure that my body is using all its energy to try to digest what I've eaten, and since the digestive process is so messed up with my body, it expends even more energy.
02-07-2014, 11:13 AM   #72
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I also very often get headaches after eating, similar to what happens to some people from not eating.
02-08-2014, 05:08 AM   #73
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I'm much the same. Eating tends to raise my body temperature, and it makes me so exhausted. That, combined with the pain after eating, makes me nap or at least try to do so. I sometimes get a jolt of energy mid-way through a "meal" too, but afterward I feel absolutely drained. I figure that my body is using all its energy to try to digest what I've eaten, and since the digestive process is so messed up with my body, it expends even more energy.
Exactly! I've never found anyone else who understands what it's like for eating to be the most exhausting activity!

Doing exercise (which I barely can do - "exercise" for me is pottering round the garden or farm with my dog) and getting out and going places often wakes me up - I'll dread going because I'm so tired, but once I get going, I usually wake up. But eating! I wake up and warm up as I'm eating and then completely crash.

I don't tend to get headaches though.
02-10-2014, 10:33 AM   #74
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After realizing that Caitlyn turns red while eating I started making a list of all the symptoms she is currently having:
Facial flushing
Headaches
Shortness of breath
Dizziness
Bradycardia (slow heartbeat)
Nausea
Abdominal pain
Decreased GI motility (gastroparesis)
Joint pain
Back pain
I have come up with the following question, is there something deeper going on here?
The two possibilities I have found are Dysautonomia or Mast Cell disorders.
Has anyone else looked into this? If yes do you have any suggestions where to go for further diagnostic testing.
02-10-2014, 10:51 AM   #75
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At one point before I was diagnosed with Crohns, I thought I might have a Mast cell disorder because many of my symptoms matched up but my doctors were very dismissive about it. Said it is rare and I didn't know what I was talking about.
02-10-2014, 02:58 PM   #76
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Nims22,
That is terrible. If you have symptoms of it you should be checked out. I have been reading that it is actually on the rise and being seen more often.
02-18-2014, 06:26 PM   #77
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MAstocystosis is rare mast cell disorder is not.
Most docs only think of mastocystosis,
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02-18-2014, 07:42 PM   #78
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Thanks MLP,
Seems like a lot of doctors mix the two up.
07-30-2014, 03:46 PM   #79
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Hi all wanted to update this thread. We are in Ohio getting the GP work up. I will keep you,posted.
08-08-2014, 02:44 PM   #80
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How did Caitlyn's appointment go?
08-08-2014, 02:49 PM   #81
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I had my endoscopy/colonoscopy this morning, and unless something comes up with the biopsies (will know next week), my Crohn's is endoscopically in remission. I'm happy, but am still dealing with symptoms, which my Crohn's doc believes is related to gastroparesis/motility issues, so the ball is my motility specialist's court. I have an appt. with him on September 4 and am hoping for more treatment options that don't include a feeding tube. I did the colonoscopy prep two days before due to my delayed emptying, and with the food out of my system, that's the best I've felt in over a year! Too bad I had to start eating again today.
08-08-2014, 05:19 PM   #82
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Caitlyn's appt went well. I highly, highly,
Recommend Nationwide Children's GI and motility team. They were fantastic. I just got off the phone with our doctor back home. She reviewed all the findings and we are going to work through a two step approach. 1. Get the pain under control, 2. Try to improve her motility. Caitlyn has a lot of pain. They think she has abnormal gut enervation. The doctor is going to start her on Neurontin for the pain.
08-09-2014, 05:20 AM   #83
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I've been scheduled for a gastric emptying study. Apparently it involves eating eggs and toast. I'll be interested to know the results, since I'm generally one of those people who has all sorts of symptoms but normal test results.
08-09-2014, 05:26 AM   #84
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I had my endoscopy/colonoscopy this morning, and unless something comes up with the biopsies (will know next week), my Crohn's is endoscopically in remission. I'm happy, but am still dealing with symptoms, which my Crohn's doc believes is related to gastroparesis/motility issues, so the ball is my motility specialist's court. I have an appt. with him on September 4 and am hoping for more treatment options that don't include a feeding tube. I did the colonoscopy prep two days before due to my delayed emptying, and with the food out of my system, that's the best I've felt in over a year! Too bad I had to start eating again today.
I'm glad to hear you're in remission, though I know what it's like when you have symptoms of a severity that doesn't correlate with objective test results. I hope your doctors will still try and be helpful with managing your symptoms despite the remission.

I also recognise the feeling of being better when there's nothing in your system! Following a day of fasting and a laxative prep my stomach is usually a lot more comfortable. I've been wondering lately how much my fullness is actually to do with the amount of food I've just eaten. I've noticed that the times when I feel most full and feel like I just don't want to force any more food down, are just before my stoma starts working. So I'll feel very full for maybe a couple of hours, then my stoma bag fills up and I feel much better - not hungry, but not so stuffed. So at least some of the full feelings are coming from my intestine rather than stomach. But either way, a system empty of food is much more comfortable!
08-09-2014, 07:16 AM   #85
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I'm glad to hear you're in remission, though I know what it's like when you have symptoms of a severity that doesn't correlate with objective test results. I hope your doctors will still try and be helpful with managing your symptoms despite the remission.

I also recognise the feeling of being better when there's nothing in your system! Following a day of fasting and a laxative prep my stomach is usually a lot more comfortable. I've been wondering lately how much my fullness is actually to do with the amount of food I've just eaten. I've noticed that the times when I feel most full and feel like I just don't want to force any more food down, are just before my stoma starts working. So I'll feel very full for maybe a couple of hours, then my stoma bag fills up and I feel much better - not hungry, but not so stuffed. So at least some of the full feelings are coming from my intestine rather than stomach. But either way, a system empty of food is much more comfortable!
I hope that your GES goes well and that you get some definitive answers! I'm very familiar with having normal test results, unfortunately; that's the story of my medical life! I suspect that I have dysmotility in my intestines as well as my stomach. I feel the same way as you're describing when my bowels move; that's what most often somewhat relieves my symptoms. I actually get a large ball-like bulge to the left of and slightly below my navel area in addition to the distension of my abdomen after eating, which goes away once my body has eliminated what I've eaten.
08-17-2014, 09:52 AM   #86
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Caitlyn had a terrible reaction to the Neurontin. The doctor wants to try Her on propranolol instead.
08-17-2014, 11:59 AM   #87
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Caitlyn had a terrible reaction to the Neurontin. The doctor wants to try Her on propranolol instead.
Oh dear. You and Caitlyn are in my prayers! I hope that the propranolol works better; is that for pain, or does it help with digestion?
08-17-2014, 03:01 PM   #88
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It is supposed to be for the pain.her doctor wants to work on the pain and then improving the digestion.
08-17-2014, 03:14 PM   #89
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I hope that it works!
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