Hurting for my son

[tannersmom]

hurting for my son

So we just found out on Monday after a series of scopes that my son will be having his colon(most if not all) removed soon. They also found a stricture that even with changing scopes they couldn't get past. I am trying to see the upside to this like his ilieostomy will be gone. We have tried it all and the ilieostomy with meds and letting the colon rest did not help at all, and he has had the ilieostomy for a little over a year. It is so hard to see the up side and smile like it is all ok. It isn't ok to start removing your childs organs at 11 years old, especially when we don't have promise that it will even help the problem.
I am trying to be strong for my son. He is scared and worried but he wants the surgery if it will mean getting rid of the bag. Guess I just needed to vent and put my worries out there.

 

[Jerman]

So very sorry that you are going through all of this, It is always so much worse when it happens to one of our children. Sending hope and big (((((hugs)))) your way.

 

[Astra]

Hiya

I'm not familiar with this procedure but I hope it will give him some relief and comfort.
As a Mum myself, it's always hard when our kids are ill, especially with surgery.
We're all here for you during this difficult time.
Big hugs your way
xxxx

 

[Mountaingem]

:hug: Oh, I'm so sorry for you and your son! You need to give yourself time to digest all of this. I would also think that there needs to be a grieving period, so to speak, to just go through all the emotions, etc.

There are many on this thread, Kello and NYX just to name two, who have had similar surguries; they have gone on to live full, enjoyable lives. Maybe contact them, reading some of their posts might make you and your son feel better, and answer some of your questions. I know the doc answers all the clinical stuff, but nothing can top real-world experience IMHO.

Best wishes to you and your son, sending healing thoughts and big hugs your way; and please keep us posted.

 

[DustyKat]

Oh tannersmom what a difficult and heartbreaking time for you. I know what you feeling with your baby having bowel removed at a young age. It is hard but I know you will stay strong for your son and we will be here for you when you need to cry, yell and scream at the injustice of it all.

I will be thinking about you and your family and I hope more than anything that all goes well. Sending you and your son loads of healing (((THOUGHTS))) and (((HUGS)))

:hug::hug::hug::hug::hug::hug::hug::hug:

Lots of love, :ghug:
Dusty

 

[gypsigirl28]

Tannersmom, I am sorry that your son has to go through all this. I know it is heart breaking watching your child go through all this pain and not really being able to help except give comfort. Being a mom I know you will be strong for him, and like dustkat said, we are here when you need to cry, yell and scream.
You are both in my thoughts and prayers.

lots of hugs to you both

 

[susanfrances]

This is a great place to come vent, cry, or just read and know there are others who really understand. I am so sorry you and your child are going through all of this. I pray it will help him feel better-

hugs and prayers for you

 

[tannersmom]

Thank you all so much. I talked to his doc yesterday and surgery may be happening first part of December. Soon I know and Tanner is asking more and more questions. Praying this is the beginning of a new pain free year.

 

[Dexky]

Oh Mom, I'm sorry it's come to this!! You are right, it's not ok for a child to have to deal with any of this. I hope it gives him some relief. I'll be here if you need to talk. Hang in there Mom!!

 

[tannersmom]

well Tanner's docs met with him and talked to him about the surgery and told him what to expect. We are hoping to have surgery scheduled for December 9th if not then it will probably be after the first of the year and Tanner just wants it done and over with. Still trying to take all of this in myself and be strong for Tanner. Thank you everyone for you support!

 

[Dexky]

Will this be in Cincinnati? What hospital?

 

[DustyKat]

I hope you get the earlier date, I can just imagine how it must be for Tanner wanting to have this sorted and for you having to watch him go through it all.

Lots of love, :hug:
Dusty

 

[tannersmom]

DEXKY yes Tanner will be having his surgery at Cincinnati Children's Hospital. I just love it there, at least I have comfort knowing he is in the best hands

 

[AZMOM]

Hey Tanner's Mom. I was just going to second your comments that Tanner will be at a GREAT hospital. When Claire was diagnosed with arthritis at 3, that was the hospital we drove to. And her Ped GI in Phoenix who we adored had done his residency at Cinncinati Children's and routinely contacted them when things got complicated for us. I know he'll get great care. Keep us posted!

Claire's Mom

 

[Dexky]

DEXKY yes Tanner will be having his surgery at Cincinnati Children's Hospital. I just love it there, at least I have comfort knowing he is in the best hands

Hey M, that's great to hear!! I have a facebook friend who is an ER nurse in Cincinnati and has assured me that should EJ ever require surgery, Cin. Children's is one of the best in the country!!! I know you're going to be frightened but at least you can get some comfort from being in the best of hands. Keep us updated!!

 

[CDDad]

Hi Tannersmom,
I'm sorry about the trouble your little guy is having - so heartbreaking.
When you described his surgery, it sounded to me almost like a J-Pouch without the pouch. You said his small bowel was connected to 10 or 12 inches that was left of his colon.
So basically, what's left of his colon will never have time to absorb the water from the stool like a normal colon. And If I understand correctly, there is no "pouch" to hold the stool.
I have an Ileostomy so I am very familiar of what comes out of the end of the small bowel. It can be very liquid, and I can't imagine what's left of his colon and rectum can hold that for long.

Before my Ileostomy, when I had half my colon removed, I had frequent bowel urgency that woke me up 3 to 5 times a night. The only drug that worked for me was low dose codeine (no narcotic effect for me, just worked). There might be some others things to try, like colestpol. (treatment of diarrhea due to increased intestinal bile acids after some types of intestinal surgery)

Good luck to you and your son!

 

[tannersmom]

Thanks CDdad. Tanner had an ilieostomy before this surgery and it did not help his colon heal so it had to come out. Tanner does not have a pouch now they just connected his small intestine to the 10 to 12 inches left of his colon, which still had active Crohn's but mild not severe like the rest of his colon. Tanner is at the moment taking flagyl 3x a day and imodium 3x a day and yesterday in about a 24hr period he went to the bathroom about 18 times. They had labs done last week and told him his sodium level was low and he REALLY had to put extra salt on his food and start taking salt tabs 2x a day, which he is taking the tabs but as for the extra salt I have to sneak and do that. I am worried, he does go tomorrow to follow up with both his GI and the surgeon and at this point I am afraid we are looking at another hospital stay We just want to get back to our normal which as you know isn't even everyone elses normal.

 

[CDDad]

So sorry for Tanner- that just plain sucks. How was Tanner doing before with the Ileostomy?
Did you reconnect just to give him a shot at a bag free life? (I can understand that!)
Good luck with the GI and surgeon. Please update us with what they say.

 

[Dexky]

It's been a while, I'm a little ashamed I didn't keep up with Tanner's story better. I know you were obviously very scared before the surgery. I'm glad Joe bumped this thread. I hope things work out soon for Tanner and you too mom!!

 

[tannersmom]

Tanner is allergic to the adhesive on the bags. Tried several different types and for the whole yr with the bag his skin under the bag was just raw and sore. But we did the ilieostomy with the hopes that with nothing going thru it and trying another med it would rest and heal. That did not happen and he developed a couple of stricture so the colon had to come out. The docs are still trying to get the bathroom trips under control and we go back in 2 weeks to see them again. Praying things have slowed down by then.

 

[DustyKat]

I wonder if things will settle a little more when he is off the antibiotics. Tanner has been through so much and I am hoping and praying right along with you that things settle down very soon.

Always thinking of you, :hug:
Dusty