Advice after barium follow through

[Chester31]

My son (16) was diagnosed with Crohn's about a year and a half ago. He has been on Pentasa since diagnosis, has done 3 rounds of EEN and took Aza for a few weeks until his lymphocyte count dropped too low. At our last GI visit in December he was told he could re-try Aza (as his lymphocyte count has picked up a little) or try 6MP. He was't keen to do either and so the compromise was to do scopes (still waiting for appointment) and a barium follow through (done this morning) and decide on the next step based on the results. The follow through results weren't good! The radiologist was very honest with J this morning and showed him several areas of narrowing in his small intestine which she said if untreated would lead to him being admitted as an emergency case requiring surgery. She found it hard to believe he has no symptoms other than anaemia and an inability to gain weight. He needed to hear this and has now said that he will take whatever medication is recommended. So that's my question - what is the best medication (if any) for stricturing disease? I would like to be as well informed as possible when I speak to the GI/IBD nurse next week.

 

[Sascot]

Sorry to hear that. Just my view :ysmile:, but I wouldn't bother trying Aza again, if you wanted to try a similar one then 6mp would be better as it is easier on the liver. However they do take up to 3 months to work. Just from reading on the forum it seems if things are bad enough that surgery is a risk, them Remicade is a good one to start with since most kids see an improvement more rapidly. Good luck

 

[my little penguin]

I would assume remicade
Ds had issues with 6-mp and his liver from the beginning.
Taking 3-4 months to get to therapuetic levels might be an issue with a lot of narrowing .
I know it seems extreme and scary but so would be emergency surgery IMO .

Other option would be Mtx but that still takes 8 weeks minimum to build up .

Hopefully the Gi will move up your scope date given the results of the sbft .

 

[DustyKat]

So sorry to hear about the SBFT results Chester. :ghug:

As Sascot and mlp have pointed out some drugs do take quite some time to become fully therapeutic and as such you need some form of combination therapy in the interim…that being EEN or Prednisone. Bear in mind that repeated cycles of EEN tends to lessen its effect as does repeated cycles of Prednisone and in the case of Prednisone higher starting doses may be required to kick start things. This is but one of the reasons why gaining and maintaining remission is so crucial with this disease.

I think the first thing you need to do is establish just how severe his disease is based on the SBFT. Scoping certainly is necessary but based on what the imaging shows scoping may not reach the affected areas. If what the radiologist has said holds true, and given your son’s history, then under your health system it should be possible to move straight to one of the biologics, Remicade (infliximab) or Humira (adalimumab) and personally this is the way I would go.

Both of my kids have had resections one of which was an emergency, emergency surgery is not a place you want to find yourself in as you have no control over the final outcome and as such the ability to preserve as much bowel as possible is lost. Although my two have had excellent outcomes thus far it doesn’t negate the fact that I would much prefer their bowel had remained intact had it been possible but it wasn’t.

Good luck mum, I hope the appointment goes well and you and your lad find a suitable way forward. :heart:

Dusty. xxx

 

[Chester31]

Thank you so much for your replies. My feeling is that we should be pushing for Infliximab as I don't feel we have the luxury of time given what we were told yesterday and the fact that J has GCSEs beginning in May. I have looked at the NHS/NICE guidelines re treatment of paediatric Crohn's and am not sure that J will meet the criteria for Infliximab as he hasn't tried 6MP or Methotrexate but I'm prepared to do battle if necessary!!!

 

[DustyKat]

Your guidelines I think are the same we have here. Given your son’s age and previous issues with Aza it may be possible for the GI to push for a biologic if the SBFT supports narrowing in several areas. Keep pushing while he is 16!

Good luck and keep us posted with how you get on. :heart:

Dusty. xxx

 

[Chester31]

Had a text today saying that the GI suggests that J restarts Aza or tries 6MP.
He has no obvious symptoms at the moment but the SBFT showed ongoing inflammation so he's definitely not in remission. I have queried this with the IBD nurse as both of these drugs take weeks/months to work and there was no mention of them being used in conjunction with EEN - no response as yet.

 

[positivemum]

Hope you hear quickly!!

Life is a mess here for B and we need something urgently

 

[positivemum]

Did you get anywhere? Have you decided what to do?

Know how frustrating it all is

 

[kimmidwife]

How frustrating for you! I would bring up remicade and say you are worried about the length of time these other drugs take to work.

 

[Chester31]

Have raised the fact that 6MP/Aza will take weeks/months to be effective but as he has no symptoms at the moment this is the route they want us to take. I think it's a hoop we have to jump through before biologics. Picked up the 6MP today so he'll be starting it tonight. Will be keeping a close eye on his lymphocyte count over the next few weeks.

 

[Sascot]

Good luck, hopefully it will work well with no side effects

 

[awmom]

The wait and see is so difficult, but hang in there!! My son's situation was very similar. Looking back, my biggest mistake was not defining with the GI, from the beginning, how we would determine if the 6mp was working, and set a point in time where, if it was not working, to move to the next step. N was on 6mp for over a year....his main symptoms were anemia and inability to gain weight, and lack of appetite. He was finally put on remicade. His anemia resolved, but he continues to have issues with very low body weight. His insurance company approved the remi only after trying various other options. I do hope the 6mp works wonders....it has for many. best of luck!

 

[Chester31]

Thanks everyone! awmom - our boys sound very similar - identical symptoms. Will keep you updated.

 

[DustyKat]

Are his inflammatory markers showing any elevation, either blood or faecal?

Good luck with the 6MP, I hope it doesn’t give him any problems. :ghug:

Dusty. xxx