Confused/afraid/mad

[CASSANDRA543]

:confused2::confused2: I have a 14 year old daughter whom has been dealing with Crohn's what I believe all of her life, but was just diagnosed about 5 years ago. I am mad because since she was 2 years old I have been taking her to the DR and even a Gastro and they all said she had gas. if only they would have taken the time to do some test maybe we could have had this under control. I am afraid because they want to give her an ostomy bag. and I am confused because I just want answers and I just cant seem to get any.

 

[ryansbronco]

Sounds similar to how I was diagnosed. Though high school I had what was thought a sever flu. Long story shot I ended up in an out of network ER and they found that I had Crohns. I've been on a few drugs and Remicade seems to be working the best. What treatments has your gastro tried?

 

[DustyKat]

Hi Cassandra and :welcome:

I am so, so sorry to hear about your daughter and what you have both been dealing with all these years. :hug:

You are amongst friends here and we understand your pain and heartbreak. My own daughter was diagnosed at 14 and went undiagnosed for 18 months, she did not suffer as long as your daughter did but by the time was diagnosed we very nearly lost her. There are many here that have the long journey you have had and I will tag Crohn's Mom as just one into this.

I hope you don't mind if I ask some questions...

Where is your daughters Crohn's located?

Why do they want to do an ostomy?

I assume the ostomy is temporary?

It is not unusual for someone with Crohn's to have a temporary stoma. If surgery is required and the inflammation is acute a temporary stoma is created as it buys time for the inflammation to be brought under control and hopefully reduce in size before a reversal is done, which results in less bowel being removed.

As ryansbronco has asked, what medications have been tried?

What are your daughter's symptoms now?

Again sorry for the questions but they will help us give you answers.

Dusty. xxx

 

[Hope345]

Cassandra,

I am so sorry that your daughter was misdiagnosed for so long and has had so much come her way at such a young age.

My daughter is 14 with with Crohns too. I know it is heart breaking.

I dont blame you for being mad. You both have every right to be, but I hope you can both move forward and get her the treatment she needs and deserves.

What meds do they have her on right now? Are they helping?

 

[CASSANDRA543]

Thanks

The Crohn's diesease is affecting her whole colon, she has not been in pain for years, but she does suffer from extreme blood lost which puts her back in the hospital for transfusion at least once a year, on her last scope the Dr stated to me that if she gets sick again that her colon would have to be removed. and I am guessing that the ostomy bag would be perm, I am waiting for her next 2 week appointment to discuss this. she is on humira the 40 mg shots weekly, along with colozol,iron, vit and calcium.

 

[DustyKat]

Oh okay, so she has Crohn's Colitis. Does it also affect her rectum?

Sometimes having the whole colon removed does result in a permanent stoma or depending on where there is disease they will leave a rectal stump and at a later date create a pouch and rejoin to the rectum. Unfortunately Crohn's always muddies the water due to its ability to affect the while GI tract making surgical outcomes unpredictable.

Dusty. xxx

 

[ryansbronco]

that dose sound tricky. Id think that the lab work would show if humira is working. Have you had a chance to talk to a surgeon yet? They can explain how they might be able to save her colon. My consult agreed to give remicade more time. He was more informative than my GI....yeah I know. My if I ever need a surgery surgeon is more of a nuts and bolt type guy. He explained in a way I could understand the best case and the omg. Needless to say hes my back up plan.

 

[CASSANDRA543]

guys thank you soooo much, I never throught about saving the rectum if possible that is something I can ask about. or talking to a surgeon
thats give me a little hope.

 

[CASSANDRA543]

we go to the pediatric gastro at the childrens hospital. in Georgia US, They are pretty good they only deal with children there.

 

[Farmwife]

Hi and welcome.
I'm so sorry to hear the difficulty she's facing.
I have a four year old that has had issues all her life. I understand the anger/hurt of doc not listening until the latter end.
I'm going to tag in QueenGothel (hi Mary). Her DD has had the surgery and I think it would be good for you to talk with her.

HUGS from a farm family in Michigan

 

[CASSANDRA543]

thanks I would love to talk to her.

 

[my little penguin]

The top place in the country for ped Ibd would be Boston children's .
Then chop( Philly), Cincy ( cchmc).
The top pediatric colorectal surgeons in the world are at cchmc.

I would try to get a second opinion at one of those places prior to surgery.

I am assuming they tried remicade or combo of humira with Mtx ?
One parent child is on stelara .

Hugs

 

[Clash]

Hi CASSANDRA543, so sorry to hear of all your DD is going through. My son was diagnosed last year at 15. We are also from Georgia, we use a GI group affiliated with Scottish Rite CHOA. I just wanted to welcome you to the forum. There are loads of members with a wealth of knowledge and compassion, I do hope your.daughter is in remission soon!

 

[Tesscorm]

I have no advice to offer but just wanted to welcome you and offer support! I'm so sorry that you and your daughter are facing surgery. It's so hard to see your child suffer! :ghug: There's another little girl here who was also facing surgery but is doing much better on Tacrolimus. Her mom hasn't been on for a while but I will tag her - izzi'smom - hopefully, she will be by and can offer some info.

:ghug:

 

[Mehita]

I second the others who said to get a second opinion and talk to a surgeon. It will bring some peace of mind if you go forward with this. If you have some time and are given the option of choosing a surgeon, I'd definitely interview a few and then, obviously, select the best.

Best of luck to you. It's so tough making these for our kids.

 

[Jmrogers4]

Just wanted to say Welcome, my son will be 14 next month. I'm sorry you are having to make this decision but you have already been given some fantastic advice. Please keep us updated.

 

[QueenGothel]

Hi, sorry you are at this cross road, it was just over a year ago when we had the colon removed for my daugther whom has UC not Crohns...(fingers crossed). We got to the point where enough was enough, my daugther needed 7 blood transfusions in 6 months time. It was pretty scary, this is extremely uncontrollable bleeding and she was 4 years old at the time. Granted the removable of the Colon is the end of the UC road because it is the cure for my DD. Crohns is different in that way. The advice given is the same I would give. If it were me and my DD had Crohns and needed a colectomy I would go to Cinncinatti Colorectal Center, it is world renown, people go there from everywhere. I would need to hear it from the best doctor on the planet. I say this because this is the only place my Daugthers surgeon would send her if she needed another set of eyes. These are the pediatric Colorectal surgeons. This is what they do best. Boston and Mayo have great GIs as well, but if I were doing the colectomy I would go to Cincy.

Most Surgeons won't do a j-pouch if Crohns is the diagnosis. Due to pouch failure then you lose more inches of intestines that are need to digest food and get the nutrition met. If I were in your shoes I would personally go for the permanent end ileostomy rather than a j-pouch. I would find out if it is complete pancolitis (the whole colon) and see if you can just remove a portion and have a temp stoma. Regardless I would get that second opinion. I did so and I felt more informed to make this big descision for my DD.

Our kiddos have different diagnosiss and I a would love to just tell you how everything is wonderful because my daugther is doing very well. It is not and easy road. The risks we took defiantly were worth it because my daugther is as normal as she every can be. But there are so many factors involved... UC, incontentence, pouchitis, cuffitis, pouch failure that are so not predictable as everyone is different. All I can say is after they removed my DDs colon and she was all healed with her bags, she was the happiest kid and it was nice to see after a year long flare. Our road is not over and she will always be different than the other kids on the inside but on the outside you would never know.

Feel free to PM me if you want to talk privately. Always lurking here and there. . The people here are awesome and were there for me every step of the way. You couldn't ask for a greater support system than what this forum has to offer. Not a day goes by I am not thankful for each and everyone of them.

Take care momma!

 

[ChampsMom]

Hi Cass...

So sorry to hear about your daughter and the struggles she (and your family) have been going through and the decisions before you...

I just wanted to offer a hug (virtual as it may be) and loving support (so hard to have our kids go through so much)... I pray you are able to find the answers and treatments that will bring your daughter into remission...

God bless...

 

[CASSANDRA543]

I would like to thank each and everyone of you for your support and response. I no longer feel as if I am the only parent in this dark world with these concerns. I plan on leaving no stone unturned, or hospital untouched if they will talk to me.

 

[Dexky]

Hi Cassandra, I couldn't add anything to the great advice already given but I will say that should things progress and she need that stoma, there are many who will tell you they've been given their lives back because of stomas. Obviously, it is and should be the last resort but don't think about it like it would be the end for her. It is for so many a new beginning All the best!!