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
08-27-2018, 11:34 AM   #490
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My 17 year old son was diagnosed with probable UC/ but can't rule out Crohn's yet- so they are calling it unspecified. Its been a tough year with many meds,
currently we are transitioning from everything he is on orally and rectally to remicade infusions. Complicating it all is a recurrent c-diff infection confusing the response.
He is currently in the induction phase of remicade and I don't know if he is improving, or whether its the antibiotics or steriods.

How long do people give remicade a chance? How soon should we see a response?

it sucks being worried all the time.
08-27-2018, 11:47 AM   #491
Jmrogers4
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Some people have relief immediately and some can take 6 months to a year to see full results. My son saw immediate relief but took a full year to reach full remission.
Even with remicade it can take messing with the dosage and timing to see results.
It's so hard because we all want that immediate fix for our kiddos and waiting is tough!
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
08-27-2018, 12:51 PM   #492
crohnsinct
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Antibiotics can really mess up the gut and so that might be clouding things right now. Give it a little time. It took my daughter 6 months to get a full response to Remade. Lots of tweaking doses and schedule etc.

If symptoms persist I would mention them to GI and see what they say.
08-27-2018, 01:58 PM   #493
Maya142
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I would say that you have to wait till the CDiff is cleared up. Then you will see if he is responding to the Remicade or whether he needs the dose or frequency increased. My daughter started out at 5 mg/kg but eventually needed 7.5 mg/kg and then 10 mg/kg every 5 weeks or so, before she went into remission. The good part about Remicade is that you have a lot of room to play with the dose and frequency, which is not the case with other biologics.

It took 3-4 months before my daughter felt GOOD on Remicade.

She also has had CDiff - twice - and it really is the absolute worst. Since you say he has had recurrent CDiff, are they treating him with Vancomycin? And has a fecal transplant been brought up?
08-27-2018, 02:10 PM   #494
susangrant
 
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thank you for the quick responses. I'm so glad of all your supports- We have felt so alone.


He had one c-diff episode last month- treated 10 days of vanco., it came back and now they are using metronidazole for another 10 days. We are not yet at the fecal transplant step.

thanks for the remicade info... I need to be patient I guess, but its so hard...

Last edited by susangrant; 08-27-2018 at 02:12 PM. Reason: added a bit more
08-27-2018, 02:35 PM   #495
Maya142
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We used Vancomycin both times - we were told that in IBD patients the recommendation is to skip Flagyl and to use Vanco. The guidelines for adult IBD patients also state that Vancomycin should be used....I'd bring it up if Flagyl does not work for him.

We were told my daughter would need to have CDiff 3 times to have a fecal transplant - so we aren't there yet either (and I hope we don't get there!!).

Hang in there. CDiff is really tough - I'd focus on keeping him hydrated and once he is done with the abx, wait and see how he does on the Remicade.

There is a lot of "wait and see" in the IBD world - I think it's one of the hardest parts!!
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