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dodie74

dodie74

Joined
Sep 7, 2011
Messages
395
Hi everyone, Not been on for a while as things seem to be going smoothly at the min (touch wood) well, apart from a fissure at his bum that keeps bleeding when he has a poos so back on the movicol, again!
Kian had his bloods done last week so hoping the results are fine. We have a hospital appointment a week on Monday, just a routine check to ask how things are etc so will update after then. xxxx
 
Glad things are going smoothly, hope the fissure heals quickly and the upcoming appointment goes well!!
 
Just had call from kians ibd nurse and the inflammation markers are raised :( poo sample and bloods on Monday to see whats going on. feeling a bit deflated now as its all been going ok. Also asked if he has been having growth spurt at all which I don't think he has really. Oh well, hopefully get some answers soon. xx
 
Yes it never fails........write a good update only to get bad news. Welcome to my life.

Hugs, I hope all will go smoothly.
 
Yep :( and it always seems to be at this time of year too, was same last year when they wanted him in to look at his bum incase he had a fistula. He isn't in any pain and doesn't feel unwell though so don't know what going on inside.... oh the joys of bloody crohns!!!!
 
Sorry to hear that. Hope it was just a virus is his system rather than a Crohns flare.
 
I think its both markers that's up, waiting on Lee to call back. I find it sooooo difficult as kian shows no physical symtoms but inside is obviously saying something different. Im hoping its nothing much to worry about. We fly up on Monday for our app at Yorkhill.
How are things with Andrew? xx
 
Your son sounds like mine shows no signs of flaring other than his esr and crp being high hope everything goes ok at yorkhill and its just something minor .

Right hemicolectomy 8/10/13
Meds

Methotrexate injections
Started 1/11/13
 
Very best of luck on Wed Sascot. hope everything goes good for Andrew. Will keep looking for updates. Willowcat, how is your sons weight and height? Kian seems to grow up the way but theres been no weight gain since our last visit 6 months ago. Really does scare me as theres no signs to look at, but its on the inside. xx
 
Hi jacks weight has never been good he is 14 and is only 5st 6oz his height is 146cm hoping that since he has had the bad bit of his small bowel removed he will start to come on saying that he stops his modulen on sat so hope he does not lose the weight he has gained before mmodulen he was only 4st 12 .
 
Kian is 10yrs old and around 4st 3lb and his height is 4ft 4. what is modulen, is that a drink? Sascot, what is Andrew having done on wed, I remember you saying it was a new procedure? xx
 
Hi modulen is a ibd complete feed that you do for 8 weeks instead of steroids you can drink it but jack has it through ng tube because he wont drink it he has 600mls during the day then 1400 through pump at night.
 
Ohhh I see. so wud it be good for inflammation then instead of using steroids? This is me away on overdrive... need to stay calm and not jump to conclusions and just wait and see what Dr Russel says now. xx
 
Its really good for inflamation jack has done it 3 times when he has had a flare with good resiults each time also helps to put weight on.
 
Maybe they will talk to us about that, will jst have to wait and see. We hand poo sample in on Monday and they are doing more bloods again. hope everything goes well for Jack when he comes off the modulen too huni. xx
 
Thanks I just hate this disease so much jack just takes everything in his stride where is I just stress about everything think it's a mum thing.
 
Yup, im exactly the same. I told Kian yesterday we had to hand another sample in and another set of bloods n he was fine. Im the one stressing about it all and the inflammation etc. Just said to hubi this morning I just wish I could take it away from him :( xx
 
Andrew is having a fistula plug put in to try get rid of the fistula in his bum cheek.
Seems strange that Kian hasn't had the Modulen yet. The way Dr Russell and Vicki talked about it when Andrew went onto it, they gave me the impression that all kids go onto Modulen when diagnosed. Maybe they were trying to get Andrew to take it. It certainly worked really well for him anyway.
 
There was never any mention of modulen at all, just the salofalk for few month then the 6mp. Oh I hope the plug works just great for Andrew, keep us posted. xx
 
Hi again, well Kians app went good yesterday. His doctor said we can stop the salofalk so now he is on 6mp only. We have to wait until the bloods and poo test are back now too, his doctor said it could just be matter of Kian has outgrown the level of 6mp he is on and it could need adjusted or the fact that constipation can also cause inflammation too so its just a waiting game. had a look at the fissure too and everything down that area is absolutely fine and no sign of a flare so im just keeping everything crossed now that's its just the meds he needs adjusted. xx
 
So good to hear that all went well with appointment dodie. :)

Fingers, toes and everything else crossed that a bit of tweaking of the meds is all that is needed! :goodluck:

In my thoughts. :heart:

Dusty. xxx
 
Ohhh well, Kian has to go for an mri scan and then scopes to see whats going on. His bloods came back saying that he is absorbing the 6mp ok and the level is ok but the calprotectin is 2600!!! last time it was 600 so a huge jump. also because his height is ok but he has been putting no weight on at all so they want to see whats going on and not leave it any longer. next step could be methotrexate and that scares me so much.... can anyone tell me much about it and is their kids ok on it? I hate crohns so much :(
 
Sorry to hear that. I think there are quite a few kids on here that have taken Methotrexate - that would be our next step if the 6mp ever stops working. I hope the scopes and MRI go okay - not much fun, but certainly the best way to see what's happening. Good luck for everything.
 
I am so sorry to read this dodie…sending loads of hugs your way…:ghug:

We have no experience with methotrexate at our end but will give this a bump up.

Dusty. xxx
 
Dodie
We only have minimal experience with methotrexate. Jack took it for a few months and it worked wonders controlling the Crohn's symptoms. It was the first time since diagnosis that all symptoms went away. Unfortunately for us the methotrexate had some bad side effects for Jack and we were worried about lung scarring. He developed bronchitis and the cough would not go away until he quit the metho. He also had a cracked bleeding rash develop on his hands from it.
He took it orally once a week on Fridays in case he needed the weekend to recover from nausea and fatigue but he never had those side effects. A lot will tell you that the fatigue and nausea or less with the shot.
Hope things are better for him and you get it all worked out
 
Do die,
My daughter did pretty well on it for just under two years. Our doctor had said you can only be on it for two years maximum anyway so that worked out all right. She had it as a shot though I know some have been given it orally. It is not a bad shot. She would ice her arm and then I would give it. She had almost no side effects from it.
Something you mentioned earlier in your posts about you noticing he always seems to flare around the same time. We have noticed the same thing. Every September Caitlyn flares up. I don't know what it is. Originally I thought it was the stress of school but now we homeschool and it is very stress free. I really would like to hear some theories on why this would be. Another interesting point is she was also originally diagnosed in September.
 
Ohhh I didn't know that they could only go on it for 2 years. What happens after the methotrexate then? It IS really strange that its happening at the same time, I said to my husband even his app for his mri is the same day (the day before the schools break for Christmas) as his tests were either last year or year before, that was when he had the fissure looked at. I just wish all the tests were over and done with now so we can get on with whatever they intend to do, its the weight thing too with kian, he is going up the way but no weight is going on at all. xx
 

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