Another update. x

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dodie74

dodie74

Joined
Sep 7, 2011
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Ok, wee update. Just had doc on phone. biopsies were fine, large bowel ok, small changes in stomach but nothing to worry about, 20cm of active crohns in the small bowel only, cant tell how much is scarring or inflammation though. So now the dilemma.... We have the decision to either move on to methotrexate or go for the op? Im thinking op may be the way to go as if we go down the methotrexate route and it doesn't work , he will prob end up with surgery anyway? I cant make this decision, my head is buzzing at the moment, arghhhhhhh!!!! Called his Ibd nurse tonight so will have a wee chat with her tomorrow hopefully and she can talk us through things. I worry about puberty , growth etc too as kian has not put weight on at all over the last year or so. so if he just takes methotrexate will that maybe get things under control and he start growing or would surgery do take the bad bit away help more with that and hopefully let him thrive? so many questions to be asked. xx
 
Hard decisions... From what I understand small bowel can really effect growth etc. What are his inflammation markers at? What kind of maintenance medicine are they talking about after surgery? Would they do the surgery and still put him on MTX or 6mp/Imuran?
 
{{{Hugs}}} to you dodie. :heart:

If it is inflammation and the Metho works then he should respond by thriving, if however it is scar tissue then no amount of medication will make a difference. And I know that is the dilemma you face, which is it?

As you know my two have had resections. We had no choice in the matter but I can’t fault the outcomes. Having said that though surgery is forever. With the hindsight of what legacy surgery can leave behind I personally would go the medication route first BUT with a specified time frame as to seeing positive results. If those time frames aren’t met then I would move to surgery. I don’t know if it will be any solace to you but growth failure is a recognised need to dispense with medication and move to surgery.

Good luck dodie, you are in my thoughts. :ghug:

Dusty. xxx
 
When he had his scopes and mri done the doctor had said after the procedure that the 6mp is definitely doing its job as it looks fine everywhere else so I think maybe they would keep him on that. Last calprotectin test was 2500 so very high. would methotrexate help with growth etc if it got it under control? I just don't know what to do for the best for my boy. xx
 
Jack was on methotrexate for a few months and had to quit taking due to a bad reaction but it completely controlled his Crohn's symptoms and was the first time after diagnosis that we saw complete remission and he did grow about an inch in just the few months he was on it when he was about 11.
I agree with Dusty maybe give it a try for a finite amount of times and see if you have improvement.
 
What a hard decision. I'm afraid I don't really have any great advice, I would find it difficult to decide too. Hopefully talking with the nurse will help. Good luck. Glad everything looks good otherwise.
 
Thanks everyone. Just don't know what to do at this moment in time. Be a long chat with his nurses then will make decision. Another thing, he starts high school in August too so would hope by then he starts to grow and gain weight. x
 
Was just wondering - were the calprotectin levels okay for a while? If so, then you would think that it is more likely to be inflammation rather than scar tissue if the 6mp was working for a while. Since the calprotectin has really gone up, it would seem to me that it is inflammation increasing, so maybe worth trying the methotrexate and checking the calprotectin in 3/4 months. Surgery would still be an option and could still be done well before starting high school. Just my two pence!
 
Oh, Dodie, what a tough decision!

I, too, wonder that the calprotectin is so high... wouldn't that likely mean inflammation versus scar tissue?

I don't know anything about methotrexate, so my next question would be how long before it works or doesn't work? And are you willing to wait that long?

DS has a small bowel resection almost exactly a year ago, but his case was a little more clear cut. The radiologist and GI poured over his MRE slides and determined it was scar tissue. I will say the surgery gave him his life back, at least for awhile. It triggered puberty and he started growing again.

But, as we all know, it's not a cure and the Crohn's came back in a different location. Remicade seems to be working for him now.

How are his symptoms otherwise? Is he functioning? Going to school? Eating well enough?
 
Hi Dodie, hugs!!! I know how difficult these decisions are :( I cannot remember all of your story from dx, so please ignore if it doesn't apply!!
My ds also just came back with 30cm of affected area in the small bowel and a fecal cal of over 1000. He had an MRE to look further, but multiple Dr's were still unsure whether it was inflammation or scarring. Their answer was to put him on EEN for 8 weeks. The thinking being that if it is inflammation it will settle and drastically improve (or even disappear). If it is the same (after another MRE and colonoscopy where they are hoping to try and 'push' through the TI to have a look) it will be scarring. This will determine if we do surgery before moving on to further treatment. They also felt that the EEN would build up his body (it has, he has gained 5 kgs so far!) and that this would be a huge benefit if he did indeed need surgery in terms of recovery and wound healing.
He is probably moving on to a Remicade combo (trying to decide between methotrexate and Imuran atm), and the Dr's don't want him on remicade until we determine if he has scarring. They think that scarring will worsen (or at least not be helped by remi) and that inflammation can sometimes heal so quickly it induces scarring.
All in all we are very happy with the plan. It has been hard, but it has given us breathing space to mull over the decisions, read studies etc; and all the time he is feeling great and gaining weight and height; it has been a win, win!! Even if he needs surgery at the end and then goes on to the stronger drugs, he will be nourished and growing and it will give the drugs the best chance at keeping him in remission :) not sure if that helps at all, but thinking of you! :ghug:
 
Wow you certainly are facing quite the decision. Guess I am lucky in that our ped GI has VERY definite opinions on what we should do and doesn't hesitate to make them known. Lucky in that I get his advice unlucky when I don't agree.

I am also of the mind that I would want to try another med first to see if it was inflammation. The FC test results certainly point that way. If it is inflammation and the med knocks it out then he should start growing. Mtx can take up to twelve weeks to work fully but I would think you would see some movement in the FC results within 8. Do you have that long to wait? Surgery will always be there if you change your mind or things start to deteriorate.

Good Luck:ghug:
 
Last calprotectin was 2500, when the doc done the scopes he couldn't get in to see the small bowel because of narrowing and there was a couple of ulcers at that area too so I guess its after looking at the mri resuls that they wonder if its scar of inflammation?? Something need to be done quick as he has actually lost a couple of lbs in weight, just not gaining at all and this was one of the things that concerned them. Apart from that he eats well and is feeling fine. xx
 
Ive just had a long chat with Kians ibd nurse so have decided to go down the meds route first. She said it is probably more inflammation so we will give the methotrexate 3 months and if no improvement then it will be surgery. We have to stop the 6mp on Friday to get it out his system and will be starting the Methotrexate injection week of the 27th. Ive just sat down and cried, its all so overwhelming and the methotrexate scares me and I juat pray to God that it works for my boy and he can tolerate it. xxxx
Can anyone give me any advice about methotrexate and was there many side effects etc? xx
 
:smile:Hi dodie, Grace has had nothing bad in the way of a reaction to mtx (yet).
She does seems more tired for a couple days but that seems to be subsiding a bit as time goes on.
I have noticed that her stools are becoming normal and her pain meds seem to be working better. I'm thinking because the mtx is working........I hope.
 
Hi Dodie, I'm sorry you are faced with such a difficult decision. My son is on weekly MTX injections after he reacted badly to Imuran. He had been on prednisone for several months, and his inflammation (small bowel) was pretty much under control when he started the injections, but it has been a good experience for us. He is growing and feels well, other than a few aches and pains, and perhaps slightly less energy than his peers. I was nervous about doing the injections, but I did the first one with the GI nurse, and then a nurse friend popped over for the 2nd one. I pretty much had the hang of it the 3rd time around. MTX can cause nausea and fatigue. My son has not had any nausea, and fatigue was only an issue the day after the injection and only for the first month or so that he was on MTX. It loosened his stools initially (and somewhat still), but that was a good thing as he was always constipated. He has not had a reaction at the injection site. Oh, and it took about 8 wks or so for the MTX to start working. I hope your son starts feeling better soon!
 
dodie74 said:
Ive just had a long chat with Kians ibd nurse so have decided to go down the meds route first. She said it is probably more inflammation so we will give the methotrexate 3 months and if no improvement then it will be surgery. We have to stop the 6mp on Friday to get it out his system and will be starting the Methotrexate injection week of the 27th. Ive just sat down and cried, its all so overwhelming and the methotrexate scares me and I juat pray to God that it works for my boy and he can tolerate it. xxxx
Can anyone give me any advice about methotrexate and was there many side effects etc? xx
Click to expand...
Lucy has been taking mtx 7 months, she takes it orally once a week and is also on bi weekly humira shots. I was really concerned about the mtx because of its rep for causing nausea and general malaise. Lucy has had mouth ulcers on two ocassions but the were minor enough and cleared up without any heavy duty meds but overall she had tolerated it really well, sometimes she says she feels 'vomitty' but this never lasts more than 15 or 20 mins. I agree it is really overwhelming when making decisions for our children in relation to these drugs.
Good luck and fingers crossed mtx works for kian
 
Thanks everyone, im so glad your kids are doing well on methotrexate. crohnskidmom...kian is the same with constipation and can go days sometimes without going, we have added movicol in too and seems to help. did your kids have an issue with weight gain also? Kian eats really well but just no weight gain at all, such a skinny wee boy. x
 
O does very well with mtx orally. Doc said shots have a better record of not causing side effects but she wanted pills. Folic acid supplementation is important and helps combat the nausea. Typically the kids take 1 mg a day. Some kids skip shot day, O doesn't. Also most docs will offer a script for an anti nausea med. I got O's filled and she hasn't had to use it. About two days after her first dose she felt like a truck hit her and a couple times after headaches but since then smooth sailing.

I really hope this is his ticket!
 
We just started on methotrexate and A had her 2nd shot yesterday. So far no side effects! I really hope it works for Kian!!
 
thanks again everyone. dancemom.... I hope methotrexate works for your kid aswell. yes antisickness meds were mentioned and also folic acid. if they have headaches, is it ok to use paracetamol when on methotrexate?
 
I'd check with Dr. We were told it is okay but since both are processed through the liver better to check.
 
No weight gain yet for Grace but remember my child it mostly tube fed.
Still I am hoping for some weight and growth. Tomorrow it will be shot five.
So still a few more weeks to go until we'll know for sure.
 
Farmwife - Did your doctor mention increasing the dose if Grace wasn't 100%? Our Rheumo said at 8 weeks the mtx should be in full effect and if A was still experiencing symptoms he would increase the dose at that point.

dodie74 - We started the folic acid a few days prior to A's first shot. I was hoping it would help combat side effects and so far so good. She had terrible nausea when she first started 6-mp and I was nervous that this would be the same. She now takes her folic acid nightly, even on shot days.
 
DanceMom, do you give the shots at bedtime too? I always give Kian his 6mp before bedtime just incase he felt sick too. xx
 
DanceMom,
No the doc never mentioned an increasing mtx.
My take was they would add another drug (H) if the mtx wasn't enough to help.
I do think some good is starting to happen from mtx. So I'll give it more time.
 
dodie74 - Her first shot was at clinic (so mid-afternoon) and she didn't experience fatigue or nausea, just a sore leg. I did yesterday's shot at bedtime and will continue to do so. Her legs were already bothering her yesterday so I'm not sure if the shot hurt her this time or not.

Farmwife - Maybe you already told me, but what dose mtx is Grace on? I'm assuming A was started out at a fairly low dose (5 ml) and there is room to increase. We've committed to a 6 month trial before switching meds. Interestingly there was not talk of adding another med. Maybe Humira is not indicated for vasculitis? I think Remicade is though. Hmmm.....
 
Good catch dodie - yes our doc told us to dose at night so they sleep through the worse of the side effects. Our doc has approved Tylenol for headaches but each doc has different views so I would check.
 
dodie74 said:
Thanks everyone, im so glad your kids are doing well on methotrexate. crohnskidmom...kian is the same with constipation and can go days sometimes without going, we have added movicol in too and seems to help. did your kids have an issue with weight gain also? Kian eats really well but just no weight gain at all, such a skinny wee boy. x
Click to expand...

Hey dodie, :ghug:

I’m sorry I can’t help with the meds side of things but I do hope more than anything that Metho works wonderfully well for your lad, bless him. :heart:

I found with my two that normal bowel motions tending to constipation were the norm for them. I personally believe that the higher you go in the bowel the more likely this scenario is due to inflammation narrowing down the small bowel so much.

The area of small bowel that Kian has affected is responsible for the absorption of many things and whether it be inflammation and/or scar tissue that is present he will have trouble gaining weight and growing until it is rectified. Once it is resolved though, either through treatment or surgery, you will see an astounding turn around both physically and psychologically. :)

Good luck hun. :goodluck:

Dusty. xxx
 
Thankyou DustyKat, Im sure now we have made the right decision and I feel more positive today than yesterday, I think everything just got on top and you try and keep it together for your child. Im sooooo proud of Kian, he is going along with the flow with the attitude of oh well, if med doesn't work, im fine with surgery and he worried about not getting on his school trips away as its a big year for him going in to high school.
Someone also mentioned about enshakes to build our kids up, would this help with the weight thing too? I was going to mention it when we have our app with the team about the med Kian going on? and also folic acid? is there anything else I should be asking about? xxxx
 
Bless you mum…:ghug:…and Kian, what a fab lad you have, I bet he fair makes your heart sing. :heart:

I personally don’t see how EN used exclusively or as supplemental nutrition can ever be a wrong thing. Used exclusively it does provide bowel rest as it easy on the gut. Even as a supplement many formulations are easier to digest than food. Even if it doesn’t do anything obvious it certainly won’t do harm if the formula is tolerated. When your child is losing weight a halt in that loss, although not as viewed as good as a gain, is pretty damned satisfying nonetheless. I would be hard pushed to believe if you saw say a dietician that they wouldn’t recommend some sort of supplementation so I would definitely speak with the team about it.

I’m sure the Folic Acid will be a given but it won’t hurt to ask anyway. :)

With the terminal ileum involvement I would also ask that they do blood levels for the following if they haven’t been recently:

Iron Stores
B12
Vit D
Magnesium
Zinc

…even if the results are normal it will provide you with good baseline readings for further down the track.

Dusty. xxx
 
I have another question. Kian has been on the 6mp for over 3 years now, so whats the difference in 6mp and methotrexate ? do they work in different ways? I know they both immune suppressants, had wee look on google but I think that's a bad thing to do sometimes. Im sure we will be given lots of info when we have the meeting in 2 weeks time. xx
 
6MP/Imuran, Methotrexate and the biologics are all in the class of drugs called immuno-modulators.

The difference between 6MP/Imuran and Methotrexate is that while both are immuno-modulators Methotrexate is also an anti-inflammatory. Both drugs are processed by the liver but use different enzymes to achieve their goal.

Sending loads of luck that the appointment goes well. :ghug:

Dusty. xxx
 
Thankyou for the reply Dustykat, appreciate it. Our appointment is on 21st January and his first shot will be Friday 31st I think. will post again after the app. xxxx
 

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