Crohn's Disease Forum » Parents of Kids with IBD » The Worried Mum's/Dad's/Carer's Club!


 
01-25-2018, 09:02 AM   #481
Maya142
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My daughters have tried both Gabapentin and Amitriptyline. The younger one is on Gabapentin. She is not sure if it is helping with pain, but it is certainly helping her with sleep. Sleep is one of her big issues - she wakes up a lot from pain - so having something that helps is great. No side effects besides sleepiness.

But she does need Miralax daily because she is on other pain meds due to joint damage from her arthritis.

Older one tried Amitriptyline years ago. Now I can't remember if it worked or not! I do know it can cause constipation.

Has he seen a motility specialist to figure out why this is happening? Would it be possible for you to see one?
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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
01-25-2018, 09:20 AM   #482
Leed2713
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My daughters have tried both Gabapentin and Amitriptyline. The younger one is on Gabapentin. She is not sure if it is helping with pain, but it is certainly helping her with sleep. Sleep is one of her big issues - she wakes up a lot from pain - so having something that helps is great. No side effects besides sleepiness.

But she does need Miralax daily because she is on other pain meds due to joint damage from her arthritis.

Older one tried Amitriptyline years ago. Now I can't remember if it worked or not! I do know it can cause constipation.

Has he seen a motility specialist to figure out why this is happening? Would it be possible for you to see one?
Sounds like gabapentin really would be worth a try. God love your girls dealing with crohns and arthritis warriors they are.

There has been no mention of a motility specialist to figure out why this is happening. I would be delighted if it was suggested as I would like to know what the cause is. The nhs is really stretched her and getting appointments can have a long waiting time. I must check with the gastro nurse if there are any motility specialists here that I can take him to. Do you know what could cause this ? xo
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Son diagnosed age 12 - July 2015

Past medication - 10 weeks modulen NG tube july 2015, Azathioprine

Surgery - Appendectomy, right hemicolectomy and part terminal ileum removed open surgery June 2016

8 weeks modulen NG tube June 2016

Current Medication - Started August 2016 Infliximab, azathioprine, vit D supplements started September 2016
01-25-2018, 09:24 AM   #483
Maya142
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I honestly don't know. My daughter has a different motility issue - Gastroparesis - and that is why we saw a motility specialist. I was just wondering if the motility meds used for Gastroparesis, might work in his case but I really don't know what is normally done for fecal loading.

But it's at least worth asking about, if there is a motility specialist you can see.
01-25-2018, 10:07 AM   #484
Leed2713
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I honestly don't know. My daughter has a different motility issue - Gastroparesis - and that is why we saw a motility specialist. I was just wondering if the motility meds used for Gastroparesis, might work in his case but I really don't know what is normally done for fecal loading.

But it's at least worth asking about, if there is a motility specialist you can see.
Gastroparesis has never really been mentioned. He actually had a barium swallow I think test was called last year when this all started. After it they actually commented on how fast it went from stomach through small intestine. He did have a narrowing from surgery resection site but was getting through fine. It seems to be after this that it slows down. I really will be finding out about a motility specialist as no one is suggesting what is causing this. I know ibs may cause this but surely then it would have always been an issue and not just started xo

Im so glad to hear that they are able to help your daughter with motility meds for the gastroparesis xo
01-25-2018, 11:29 AM   #485
crohnsinct
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Just going to throw a couple other thoughts out there. Dairy is known to be a common food intolerance that can cause constipation. Perhaps there are other food intolerances that may be causing this.

Also, IBS does cause constipation and many IBDers have an IBS overlay. My older Crohnie was dx'd with IBS by her last GI, emphasis on last. It wasn't IBS, it was a flare, but her new GI also said he thinks she has SIBO (small intestinal bacteria overgrowth). It is very common in IBD patients and especially happens around flares and in patients who have had previous surgery. It is very, very often misdiagnosed as IBS because it produces many of the same symptoms. Diarrhea is more usual but it can produce constipation. The test for it is an easy in office breath test.

I am assuming he was checked for Celiac at scopes but Celiac could also cause constipation.

Ugh! The gut is so cloudy!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet

Last edited by crohnsinct; 01-25-2018 at 11:32 AM. Reason: typo
01-25-2018, 01:49 PM   #486
Maya142
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If food is going through his stomach fast, he definitely does not have Gastroparesis. But I wasn't suggesting he had it, I actually meant a motility issue affecting the colon.

https://aboutconstipation.org/colonic-inertia.html
01-29-2018, 07:21 AM   #487
Leed2713
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If food is going through his stomach fast, he definitely does not have Gastroparesis. But I wasn't suggesting he had it, I actually meant a motility issue affecting the colon.

https://aboutconstipation.org/colonic-inertia.html
Yeah that's what I was thinking that it wasn't the same but had been trying to find other possible causes for slowing down when it got to the large intestine. I have been reading the book I got from amazon and it has made me so interested in the pain management clinics mentioned. However none in Ireland or uk I can find. Its interesting too as aspergers syndrome is mentioned as well IBD. He also has aspergers syndrome. His school has contacted me today to say that he is so unhappy at school and they want a meeting.
01-29-2018, 07:28 AM   #488
Leed2713
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Just going to throw a couple other thoughts out there. Dairy is known to be a common food intolerance that can cause constipation. Perhaps there are other food intolerances that may be causing this.

Also, IBS does cause constipation and many IBDers have an IBS overlay. My older Crohnie was dx'd with IBS by her last GI, emphasis on last. It wasn't IBS, it was a flare, but her new GI also said he thinks she has SIBO (small intestinal bacteria overgrowth). It is very common in IBD patients and especially happens around flares and in patients who have had previous surgery. It is very, very often misdiagnosed as IBS because it produces many of the same symptoms. Diarrhea is more usual but it can produce constipation. The test for it is an easy in office breath test.

I am assuming he was checked for Celiac at scopes but Celiac could also cause constipation.

Ugh! The gut is so cloudy!
Oh it really is I wish I could help him as its really affecting his life now to the point that his school has just rang and want to meet with me. He is miserable all the time and says he just feels horrible all the time. Last year he was given some treatment for bacterial overgrowth as it was a suggested possibility. It didn't make any difference though. That is interesting about the celiac I am unsure if he was ever tested but will be asking the question xo
01-29-2018, 07:46 AM   #489
Leed2713
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If food is going through his stomach fast, he definitely does not have Gastroparesis. But I wasn't suggesting he had it, I actually meant a motility issue affecting the colon.

https://aboutconstipation.org/colonic-inertia.html
Thank u for the link also Maya142 xo I am going to take him to my GP as his consultant is so busy and see if they know where he can get transit test carried out
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