Back from 2nd opinion visit = more ??

[coolbeans]

Hi everyone,
we had our 2nd opinion visit at Cincinnati last week. They are recommending an ileostomy so I need any info/tips/suggestions/questions we should ask that you have. Her CD is mainly located in her colon & they advised this would give it time to heal. This contradicts what our GI surgeon who was going to put in the G tube said--he advised that we didn't need this surgery. Hmm which way to turn?

Cincy also recommends the Stelara be given every 4 weeks and to stop the Imuran if she is on high doses of steroids b/c she is too immune suppressed & more prone to infection. We go back to our GI tomorrow so we have lots of questions--may be there a while--haha!! Also Cincy hooked us up with all their resources which was amazing.

on a bright side, we were able to meet with an amazing psychologist there who gave us the name of a psychologist with the hospital we go to. I have been asking for that help since we have been there & was put off time & again. I guess it takes going to a top facility 3 hours from home to get the help you need. I have e-mailed the psy & she responded within an hour & have already set up the appt. I guess I am just thankful to finally get her that help. After meeting with cincy psy, dd asked why he couldn't have been our last apt b/c she was so de-stressed. I wish we lived closer to them.

thanks in advance.

 

[Maya142]

Wow!! That's wonderful that they set you up with a psychologist. That is the great part of these big hospitals with large pediatric IBD centers - they have so many resources. We are lucky enough to live close to one and travel an hour to an hour and a half each way for my daughter to see her psychologist.

If you do the surgery, would you do it at Cincy?

My daughter needs surgery on one of her joints due to her arthritis and we are seriously thinking about doing it at Boston Children's, even though that is far away from home. It will be more expensive, but I think it would be worth it to have an excellent surgeon. There is usually a Ronald McDonald House you can stay at which helps cut down costs.

Did they talk about replacing Imuran with MTX? I wonder if that would be safer than keeping her on Imuran.

How long do they anticipate her being on steroids? Our surgeon did not want to do an abdominal surgery on my daughter even on Entocort. Do they want her to taper off before the surgery?

My questions would include:
Would the ileostomy be temporary?
And it is urgent based on the state of her colon, or could you wait and see if Stelara works and if not, then do the surgery?
Would EEN be an option to heal her colon or TPN, if she had a G tube or a PICC line?
Which medications would have to be stopped before the surgery?

I would also consider a third opinion if your GI really does not recommend surgery, to get someone else to weigh in as a "tie-breaker" vote.

Hang in there - this is a LOT to think about and process :ghug:.

 

[Lady Organic]

I agree and I have heard too from experiences that steroids and surgeries are not a good match. Steroids would make skins and tissues more fragile and more at risk of tearing after, on the site of the surgery stitches. i dont know what would be the ideal timing after a round of steroids before operating but this question is really worth investigating.
Could Enteral nutrition replace the steroids? This is what the first GI encouraged with the G tube if i understand correct?

 

[coolbeans]

Thanks so much. The GI today didn't have any info from Cincy except what I had been given or printed off. We discussed what they had recommended regarding Stelara, steroids and ileostomy procedure. They are making arrangements to do the Stelara next week which would be four weeks. She wasn't really able to say much about the procedure except to say it was better to do it in Cincy where they are more experienced. We forgot to ask about the urgency for the procedure--I am going to send a message to the nurse tomorrow. I wish they could just say yes this is what you need to do & it will all be better. Very Pollyanna I know.

The surgery is scheduled for the end of this month at Cincy--I had to do that when I got her appointments otherwise it would've been march or April (which may not be bad idea to see if Stelara may work? We were fighting for insurance approval when the scheduling was taking place so we didn't know when it would come about). Another ??

I didn't feel like they really thought EN would help her. We did speak to a nutritionist but they didn't act like that was the way to proceed.

We have five more weeks of steroids before we will be completely done.

 

[Maya142]

I would check with them about the steroids - I assume they're ok doing surgery while she is on steroids? When my daughter had an abdominal surgery, we were told there was a much higher risk of infection while on steroids and the incision will heal more slowly.

My daughter had a very minor procedure while on Prednisone - a mole removal from her scalp. The mole had doubled in size in 2 years and they were worried considering with some of the IBD meds, there is an increased risk of skin cancer.

Anyway, they said they didn't think it was cancerous but wanted to remove it that day. So we let them, even though she was on steroids. It was quite deep and the derm said it would take one month to heal.

It took 6 months to heal! We kept going back and they kept saying it was because of the steroids. Well, if they had told us that, we would have waited a month to remove it!

Anyway, I just wanted to tell you our experience.

I would also ask like you said, whether it might be better to wait and see if Stelara will make a difference. If it's not urgent, maybe you have some time to let Stelara work.

How is your daughter doing with the idea of ileostomy?

 

[coolbeans]

That is why I This forum--real people with real experiences who can give true advice. Thanks. I will definitely ask about the steroids and the urgency. I hate that your dd had to go thru all that.

She has asked some questions about the procedure but still not excited about it. She is doing good right now so she is questioning why we would want to have surgery.

She actually talked to her GI today for the first time today & the GI was pleasantly surprised. It was only b/c she wants her to write a letter saying she can have an emotional support dog which the dr said she would do but that she would still have to learn coping skills. I admit the dog does help with anxiety but told her not to get her hopes up b/c the public school would probably say no. More as that evolves....

 

[my little penguin]

Een typically isn’t as effective on colonic disease
Most switch kids to tpn to rest the gut some prior to surgery
Definitely ask about the steriods since
They do complicate matters

As far as waiting a month till March /April
Stelara takes a good 6 months so if she just had the first dose in Jan
I wouldn’t expect much before July

Even at every 4 weeks
Really get a another opinion since your GI doesn’t seem too comfortable woth her case
Cincy is good
Bch can give a records review online within 2 weeks

Did child life /psychat Cincy show her /talk to her about the ostomy?

 

[Maya142]

Is an emotional support dog allowed in school? I don't know the laws (and they may vary by state).

My daughter has a letter to take an emotional support cat to school but she can only have her cat in her dorm (which is apartment style). Only service animals can go to classes and an emotional support animal is different from a service animal in the eyes of the law.

That said, she has decided not to take the cat to school because she is out of her apartment for most of the day and she's afraid the cat will get lonely :lol:.

We got my daughter kittens when she was diagnosed with Crohn's. They have actually really, really been a huge help. They always make her smile when she is down. No matter how much pain she is in, they can always make her feel better.

I definitely agree learning coping skills is very important and she definitely should work with a psychologist, but a cuddly pet is very helpful too .

If your daughter is feeling better and the surgeon and GI say the surgery isn't urgent and you can wait and see if she starts feeling even better on Stelara every 4 weeks, then I would do that, just because I think an ileostomy will probably be pretty hard on her.

Obviously, her health comes first and if it's urgent, you have to do it, but if it isn't then well, you can give Stelara a shot.

Stelara does take a long time to work though - I have heard 6 months though it may be faster if insurance approves every 4 weeks.

 

[Maya142]

I think CHOP might do a record review too - but not 100% sure about that. Considering it is a BIG surgery, another opinion could be very helpful.

It does sound like her local GI feels like she is not comfortable with your daughter's case and is going to let Cincinnati Children's make the decisions.

 

[coolbeans]

MLP--that is what I was telling hubby earlier about at least 6 months for Stelara to work. He seems to think it's doing something cause she is feeling good but she's also jacked up on steroids too. He, like her, would like to put his head in the sand and forget it exists. Wouldn't we all??

Bless their hearts, child life had to work with her almost two hours to get the Iv in for the MRE. She was so agitated!!
We met with the surgeon and nurse but they didn't show us any mechanics on what it looked like--said that they had nurses you met with beforehand that would go over all that. Our GI today actually pulled up and discussed the procedure today which was a help. We just don't want to go that route unless Stelara won't work;however, don't want to wait & colon becomes more damaged. I always looked at surgery as last resort but if it improves her quality of life, how can I not go that route??

 

[coolbeans]

Maya142--It did not sound like our GI was very confident in her surgeons from what I heard today. Hubby didn't think she contributed anything today.

I contacted Philadelphia regarding record review & they told me they did not do that. I may have asked wrong but that is what they told me. They tried to schedule appt but I explained I was in ky. Then I contacted Cincinnati--they would do a peer to peer for specific situation but not review all the records. We are fortunate to live within driving distance & be able to go there for a 2nd opinion visit. I don't think I contacted Boston.

 

[my little penguin]

Boston’s website states online record review
I know a few parents who did that
Child life should be able to show her everything
There is also an ostomy doll

Very difficult situation
Hugs

 

[Maya142]

Yes, definitely work with child life. If you do have the surgery in Cincy, can she see that psychologist while she is in the hospital? My daughter's psychologist always visited in the hospital - every day sometimes. She really helped her deal with having an NJ tube and I bet your daughter could use some extra help coming to terms with an ostomy.

For her IV - have you tried things that can help? Numbing cream? Buzzy?

Does she have difficult veins? There are some tricks to help with those too - like using a hot pack on site or running her arm under hot water. That makes veins easier to find.]]

 

[coolbeans]

Yes child life are absolutely wonderful. I don't know about seeing that psych in Cincy but it would be great if she could--she really liked him & his manner.

She has great veins--it was the anxiety of new place/new people--she is not one for change of any kind. She got so stressed beforehand that when they were finally able to attempt it, the vein rolled & they had to stick her again--ugh!! Of course it would happen there so all she has is that memory & she has told everyone they are awful when she didn't help matters any.

Well as I was leaving for work this am, she was in the bathroom & is passing blood again. I guess I take that as a sign. The bad thing is they did not do labs yesterday or maybe they would have noticed something. We go back on Tuesday for the Stelara labs--I will monitor over the weekend. We just began the steroid taper on Wednesday of last week--bless her heart!! I absolutely hate this.

 

[coolbeans]

I am leaving all the emotional support dog issue up to her--it has actually been a great thing for her to focus on. I am letting her research & get all the information. I told her to determine who we need to talk to at school & I would arrange a meeting but she will do the talking. I also advised not to get her hopes up as it would be a major distraction but all they can say is no. And the nurse told her yesterday that she could bring her with her to the visits so that will make that easier at least.

 

[kimmidwife]

My older daughter is on Stelara and doing great just to give you some encouragement. It has been the best drug fromher so far.
She has also had surgery which helped her a lot.