Question!!!

[tannersmom]

This question may be silly and I have a feeling I already know the answer but.....
My son had an ileostomy for a little over a year to let his colon rest. When this didn't work they removed all but 10 to 12 inches of his colon and reconnected his small intestine to that. Now the last bit of colon did have active Crohn's but not terribly bad, at that time. After a year after this surgery Tanner had a scope on the 30th of December. Doc said the connection is still good and wide open(yeah) the small intestine is clear(yeah) BUT the last bit of colon is Very inflamed and friable(?). So here is the question(as I was in shock and didn't want to know yet) if this gets worse and they should talk about removing the last bit of colon, can the small intestine be pulled on down so he can continue using the bathroom as normal or are we talking permanent ostomy? Trying so hard not to dwell on this but since the scope he has had lots of trips to the bathroom

 

[Terriernut]

What meds is Tanner on? Is he on suppositories as well by any chance? When you say the last little bit is inflamed, can you tell us what little bit, the sigmoid, the rectum?

And after a colonoscopy I have to say with active crohns, it isnt unusual to need to bathroom for a good bit afterward. But he should be slowing down a bit by now. What did the Dr say? Did the GI think they should try different meds at this time?

I am so sorry your little man is having these issues. You must be worried sick!
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[tannersmom]

Tanner is on 6mp and a canasa suppositorie. The 10 to 12 inches left of the colon are from the rectum. After the scope when the doctor came out to speak to us is when he told us it was very inflamed. I just didn't want to hit the What next questions at that time, trying to be positive that the canasa is going to help. But now I am wondering if this doesn't work what next and can the small intestine be pulled down to replace the bit of colon left. That may sound dumb but I just don't want to think about the other option

 

[Terriernut]

I'm certain they will try everything they can to get it under control first. There are still the Humira or Remicade options available as well.

But no generally J pouches dont work with crohns patients. But they may give it a go anyway and see how he does. The problem being that the crohns tends to present itself in the TI.

Dont give up hope yet, they have plenty more meds to try first! Bless you, you must be so worried! I wish you well, and your son.
:rosette2:

 

[tannersmom]

well see the thing is we have done all meds before he even had the ileostomy done in 2009. Tanner has tried them all, and if they work they don't totally help and they stop working pretty quickly. Tanner is one of those lucky Crohn's people who the doc's say is a tough case! So while trying not to worry I worry because our options are small.

 

[Terriernut]

Oh honey. If it comes to a permanent one, be not afraid! I think 99% of us on here with one will tell you it has been the best thing that ever happened. And far from our lives being over...they began after we got them.

I bet there are some more people who will chime in as well.

Keep hoping, keep praying, and keep being a wonderful mum. Come on Tanner!!!
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[Susan2]

Hi Tannersmum.

I'm not an expert by any means, but I think that the answer to your actual question: "...can the small intestine be pulled down to replace the bit of colon left?" is no. The content of the small intestine is in a liquid form and needs to go though the colon to have a lot of the liquid removed and be packaged into stools. The content of the small intestine is also very acidic, which is why, when you have diarrhoea, you get a sore bottom.

Sorry if that sounds a bit harsh, but I think that it is better to know facts.

And, as Terriernut said, don't be afraid of a permanent ileostomy. How did Tanner cope with the temporary one? Most children and teenagers cope better with an ostomy than with having to rush off to the toilet all the time, especially if they have been having "accidents" in public.

Hopefully it might not come to that for Tanner. :ghug: for you both

BTW I've had an ileostomy for 12 years.

 

[tannersmom]

Thanks girls!! Well Tanner had problems with his temporary ileostomy in that his skin developed a major allergy. We tried so many brands and types of bags, we even started with the hypoallergenic/sensitive skin types. The ostomy nurses were even stumped, Tanner's skin was so bad he looked like a burn victim on his stomach but even one day without the bag and his skin would clear right up! So that is my major concern. Tanner coped ok with it but as you can imagine (he was 10 at the time) it is was tough, kids are mean and now he is 12 will be 13 in June so now we have the fun teen years. It has just not been a easy thing, we seem to hit a wall no matter what we try.

 

[glum chump]

Oh tannersmom

I'm so sorry that Tanner's had so many issues with his skin...it must be so hard on both of you!

I would agree with Susan2 and say that the answer is probably a no. But the other thing to consider is that most doctors (including surgeons!) are likely reluctant to do any sort of permanent intervention on a young person's body unless it's vital. I had read somewhere that because young people's bodies are growing and changing until their late teens, they usually want to see how things sort themselves out in the growth rather than doing anything permanent.

It upsets me to hear that my fellow stomate is facing acts of meanness from his peers. Grrr. If this does become a permanent thing, I really hope that there are some shifts in products so that his skin doesn't suffer like it has been.

Wishing Tanner good health,

Kismet

 

[tannersmom]

well his doctors know surgery is the last resort for us, and I hadn't thought about the whole still growing thing. I just wish they would find a cure soon, for all of you!!!!

 

[Terriernut]

I hope they find a cure for Tanners sake! My life is mostly behind me.

As for his skin problems, yikes. If you search for posts from Kossy, he has a heck of problem with adhesives. He might have the answer for you. If indeed you need it again, which I hope you dont.

Bless you and Tanner. Belly hugs from across the pond!