Worried

[Willowcat05]

Hi jack has been and had scopes done not good news. He has ulcers pus and a badly swollen ileum valve doc couldn't get by it with scopes so thinks the best thing to do is have it removed. Going to ask for an emergency MRI scan to be done before he makes his decision. That is why is is not growing he is 13yrs and only 4ft 8in and 32kg. Has anybody had this op done and could give me some feed back on it ? :confused2:

 

[crohniemum123]

Hi my son was in a very similar situation 2 years ago,(aged 14)...our world fell apart...unfortunately during the initial scope to see what was going on, his bowel perforated as they tried to get in as it was so damaged and in a
poor state,this resulted in a major repair by lapro surgery. As his weight was only 30kgs we had to wait for him to recover from that surgery and get stronger again(7 months on Ng tube feeds overnight plus azathioprine and infliximab) but knew within three months that this meant more surgery, as there was lots of scarring.He had a right hemicolectomy (illium and valve removed) once his weight hit 50kgs. He has never looked back since that surgery, infact one week later he wanted to go back to school as he felt so brilliant! he started to grow and has not stopped yet! almost 6 feet tall and 65kgs now,full of life like he should be. I was terrified but it turns out you have to trust the professionals to know what they are doing and if you have any doubt ask for a second opinion. It will get better! trust me:ghug:

 

[Willowcat05]

Thanks for the feed I trust his doctors 100% Its just that I was not expecting that outcome I thought it would just be the case of changing his medication but reading your thread has gave me hope that it will be the right thing to do for jacks sake .

 

[Farmwife]

Hugs Willowcat05

I can only imagine the shock of hearing the news. I do know when it come to Crohn's that doctors will only mention surgery if it's REALLY needed. I'm sure once he starts to grow and you buy him he's 6th pair of bigger jeans:yfaint:, you'll think it's worth it.

Sorry no advice on the surgery front.

:ghug:

 

[Mehita]

I agree with Farmwife that doctors do not recommend surgery lightly, especially with pediatric patients.

My son had a small bowel resection in January and it's like he has a new lease on life. Almost 15 pounds in 3 months and a good inch in growth. He's doing quite well. A different surgery than what you're facing, but it was definitely the right thing to do in his case.

Keep us posted on the MRI results...

 

[CarolinAlaska]

Willowcat, sorry to read the bad news. I don't have experience with that surgery, thankfully, but I've read lots of great reports of what a difference it has made for other people! I hope your boy does well.

 

[Sascot]

Sorry to hear that! I don't have any experience with operations (other than removal of abscesses), just wanted to send my best wishes and hope the operation goes well if needed. Who is the surgeon? Andrew had Mr Walker - he was really good and I would trust him no problem.

 

[Willowcat05]

Sorry to hear that! I don't have any experience with operations (other than removal of abscesses), just wanted to send my best wishes and hope the operation goes well if needed. Who is the surgeon? Andrew had Mr Walker - he was really good and I would trust him no problem.

I don't know who the surgeon is yet the doc who done his scopes was Dr Barclay at Yorkhill hospital I suppose I will find out after MRI scan is done.

 

[jmckinley]

So sorry for the news of surgery. We haven't had experience with surgery, but I do believe that GI's don't recommend it for Crohn's unless it's absolutely necessary. Hugs to you and I hope that your son gets some relief soon even if it means surgery. This is a crucial time for growth for him.

 

[Mehita]

Any news?

 

[Willowcat05]

No nothing yet hope to here about MRI scan shortly scan list is long hopping to get a cancellation appointment. Thanks for asking.:devil::ghug:

 

[Brian'sMom]

Our son's colonoscopy in March showed an area with ulcers and pus. I forgot to ask why they don't prescribe anything for the pus. Isn't that an infection? GI added methotrexate instead. Only 3 doses so far. I've heard that surgery can really help some kids but hope your MRI has good results and you can avoid it.

We also have growth problem. I guess their bodies are too busy using calories to fight inflammation instead of growing. Ugh!! How come some of us don't get remission?

 

[my little penguin]

Brian's Mom- I forget will your son "drink" supplements. SOmetimes that helps with growth for those that are not in remission.

Or get 1.5 times more calories in him than needed by the average kid ( easier to digest the better)

 

[Sascot]

Hope they manage to get a cancellation soon. Have you tried phoning the MRI secretary and giving your mobile number? I do tend to nag them :smile:- but if they can put a voice to the request maybe it makes it more "important" to them to phone you if a cancellation comes through.

 

[Willowcat05]

Brians mom -He is on EN feeding through NG tube just now so is not allowed any food or supplements just 7up and water still has 5wks to go with this. He has been on this before (last February) and put on weight so hopefully he will do the same as to the growing he is not going to grow very much because of where his crohnns is in the ileum valve that why the doc is keen to do surgery.:ghug:

 

[DustyKat]

Hey Willowcat...:ghug:

Is there any chance that they could do an MRE?
It's just that an MRE will visualise the small bowel better and likely give a more accurate picture of what is going past the ileocaecal valve in the ileum.

As has been said, surgery is never suggested lightly and for children that do not respond to conventional methods of treatment it should be a consideration when there is ileal involvement and failure to thrive.

Certainly procedurally and recovery wise you are in the best position when surgery is done as a planned procedure rather than emergency one.

Both of my children have had right hemicolectomies. One was an emergency operation and the other a planned operation. They have both done wonderfully well since their surgeries, they were put straight into remission and have stayed there. In July it will be seven years for my daughter and it was two years this month for my son. Compared to life pre surgery I would have to say it was the best decision and outcome ever for us. Pain, suffering and hospital stays were replaced with school, sport, socialising and normality! It doesn't get any better than that.

Good luck!

In my thoughts. :heart:

Dusty. xxx

 

[Willowcat05]

We'll that's Jack had his MRI scan today, didn't like the lactoluse they gave him to drink before hand or the scanner but got through it, will find out results in about 2wks. Hope everythings ok and he doesn't need surgery.:ghug:

EN feeding through ng tube
azathioprine 50mg
Ferrous Sulphate 200g