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Crohn's Disease Forum » Parents of Kids with IBD » MRI no active inflammation still getting symptoms ??


08-01-2016, 03:40 PM   #1
Leed2713
 
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MRI no active inflammation still getting symptoms ??

Hi my son had a appendectomy and right hemicolectomy 8 weeks ago. He is due to start remicade on Thursday and had MRI two weeks ago. The consultant secretary rang me to say no active inflammation seen on the MRI. He has started to suffer what he calls 'crohns pains' between a 4 and 5 on his pain scale. Also he has complained of pain on bowel movement as well as urination. In fact on one occasion the pain was sever enough for him to scream from the bathroom in pain. Is it possible an MRI can miss anything ? I know this sounds like a ridiculous question but I am a little concerned. Though I think it may be also as I am stressing about the side effects of the remicade as he also takes azathioprine xo
08-01-2016, 05:07 PM   #2
Tesscorm
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Sorry that your son is still having so much pain after his surgery. It is possible that MRI can miss things. Visible signs of crohns can be missed on a colonoscopy and only found through biopsies, so signs could definitely be missed on an MRI.

Has he ever had an FC (fecal calprotectin) test (stool test). This would indicate inflammation in the intestines...

Another possibility is adhesions (internal scar tissue) from the surgery. I have no experience with this, have only read that it can cause pain later on. And, by 'later on', I'm not sure if it takes time to develop the adhesions or if it's soon after surgery. But, may be worth asking your son's GI about this.

I do hope the start of remicade will help; if it is some active inflammation, hopefully, the remicade will get it under control quickly.
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
08-01-2016, 05:23 PM   #3
Maya142
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I hope Remicade helps. I agree with Tess -- MRIs aren't necessarily 100% accurate and things can be missed. Hopefully, Remicade will help if there is residual inflammation that they are missing. Some kids respond immediately and others take a couple infusions.

Hang in there!
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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
08-01-2016, 05:35 PM   #4
my little penguin
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Yet another thing when there is inflammation the nerve cells send out signals
And a lot of the time once the inflammation goes down it takes a while for the nerves to calm down and learn to stop sending pain signals
This has happened to Ds at dx and his most recent gi issues

Hugs
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08-02-2016, 07:20 AM   #5
CarolinAlaska
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My daughter's MRE didn't show inflammation, but pill cam showed "ulcers throughout"
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
08-02-2016, 07:59 AM   #6
Leed2713
 
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Thank u everyone for your replies. I will keep u all posted how his appointment goes tomorrow. Also how the remicade goes on Thursday. It is such a long haul for him. Thank u for making me feel comfortable to discuss all this and not feel like I am always moaning. Just wish I could take all his pain. Things have eased obviously from before his op so I just need to remain patient and positive that remicade will work well for him xo
08-03-2016, 08:33 AM   #7
Tesscorm
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Always feel free to come with questions, worries and just to let it out. It's so hard and heartbreaking to watch your child suffer and not be able to take it away. It helps to have other parents understand and offer support. Everyone here understands.

I hope you start to see improvement soon after starting remicade!
08-07-2016, 03:43 PM   #8
Leed2713
 
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Always feel free to come with questions, worries and just to let it out. It's so hard and heartbreaking to watch your child suffer and not be able to take it away. It helps to have other parents understand and offer support. Everyone here understands.

I hope you start to see improvement soon after starting remicade!
Thank u tesscorm it really is so hard. I think I just thought last year after diagnosis he would just take medication after the 10 weeks if modulen and he would never get symptoms again. Little did I know that in less than a year he would have had major surgery and have been back on modulen and starting biologics. Thankfully Tuesday went well. He is feeling better. Still few symptoms but not as bothersome so fingers crossed. The nurse did say that it's usually subsequent infusions that there would be a reaction if there was going to be. That worried me a little but again need to think of all the things that can go right not all the things that can go wrong. The veins were a bit of a nightmare again and he got really upset about that. When I mentioned a port it was shot down instantly. I just felt that with his Asperger's it would be less distressing for him. He has a blood test now again in the morning so will be another traumatic experience getting a vein. But he is starting to accept that he needs this done. Thank u all again for being a pillar of strength it's so much easier to chat in a group with strangers and people who have been here. I like to keep up the strong front in front of my son and family xo
08-07-2016, 03:45 PM   #9
Leed2713
 
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Sorry thursday that was supposed to say. Next loading dose 18th August and 3rd on 15th September then every 8 weeks. The gastroenterologist also wants to keep him on the azathioprine as well
08-07-2016, 04:29 PM   #10
pdx
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I'm so sorry that your son has been through so much. I really hope that Remicade will work well for him.

My daughter is extremely sensitive to all kinds of physical stuff, to the point where she was often hysterical during her first hospitalization due to the blood draws and IV's. I really did not see how we would ever manage Remicade, but we're almost 2 years into it now, and we've figured out ways to make it bearable, for her and us.

First, we always put 5% lidocaine cream on her arm about an hour before the IV goes in. We also use a Buzzy (buzzyhelps.com) while the IV is placed, and that helps too. (Lately we've been leaving the Buzzy strapped to her upper arm during the infusion, and she presses the button occasionally when she feels any twinges of pain.) She plays games and watches videos on an iPad during the infusion itself, and I also bring some of her favorite foods along. Finally, we used a small dose of Ativan (lorazepam) for the first few infusions, because she was really anxious beforehand, even in the car on the way to the hospital. She doesn't need the Ativan any more.

There are also kids on the forum who've successfully gone to see a therapist about their needle phobia, so that's another option.

One nice thing about Remicade is that blood draws can be done during the IV placement, so there's often no need for separate blood draws for labs.

Good luck with everything--hope things get easier soon.
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
08-07-2016, 05:22 PM   #11
kimmidwife
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I am sorry he has had such a rough time. Hoping the remicade is his magic and that he continues to recover quickly from his surgery!
__________________

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.
08-08-2016, 07:38 AM   #12
Leed2713
 
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I'm so sorry that your son has been through so much. I really hope that Remicade will work well for him.

My daughter is extremely sensitive to all kinds of physical stuff, to the point where she was often hysterical during her first hospitalization due to the blood draws and IV's. I really did not see how we would ever manage Remicade, but we're almost 2 years into it now, and we've figured out ways to make it bearable, for her and us.

First, we always put 5% lidocaine cream on her arm about an hour before the IV goes in. We also use a Buzzy (buzzyhelps.com) while the IV is placed, and that helps too. (Lately we've been leaving the Buzzy strapped to her upper arm during the infusion, and she presses the button occasionally when she feels any twinges of pain.) She plays games and watches videos on an iPad during the infusion itself, and I also bring some of her favorite foods along. Finally, we used a small dose of Ativan (lorazepam) for the first few infusions, because she was really anxious beforehand, even in the car on the way to the hospital. She doesn't need the Ativan any more.

There are also kids on the forum who've successfully gone to see a therapist about their needle phobia, so that's another option.

One nice thing about Remicade is that blood draws can be done during the IV placement, so there's often no need for separate blood draws for labs.

Good luck with everything--hope things get easier soon.
Yeah it is so distressing to see the kids go through all that when they have a needle phobia. Thank u so much for the tips must look into the buzzy sounds great. That's brilliant too two years and doing well with everything. Fingers crossed we will be the same xo
08-08-2016, 07:39 AM   #13
Leed2713
 
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I am sorry he has had such a rough time. Hoping the remicade is his magic and that he continues to recover quickly from his surgery!
Fingers crossed for remicade is right. Was it nervous but have also heard all about it being liquid gold when it works. Thank u for your kind words and hope all is good with u xo
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