GI says he is 99% sure I have chron’s

[Cyoung]

Hi all, I’m new here… in 2018 I had a surgical error… and that led to many more surgies to fix the error. Since then I’ve been having period crazy pains in my abdomen. For the past 4 years GI couldn’t figure out what it was and said it was likely due to the scar tissues causing adhesions in my abdomen. This year in May I had a very bad flare up and was hospitalized for a week. My intestines shows sign of narrowing and I wasn’t able to do an endoscopy or pull camera due to the risks. So my GI now says he is 99% sure I have crohn’s based on the CT scan showing strictures but it can’t be confirmed.
He wants me to start on Skyrizi and kept telling me how if I have another flare up and not start treatment asap, I’ll face more serious health issues. So, under pressure and not knowing what to do I agreed and will be starting treatment sometime in the near future.
I also have high blood pressure and my family doctor suggested me to drink celery juice on top of the meds I am on. But I’m not sure if I should try since I read up how celery can cause serious flares IF I really do have crohn’s.

any suggestions???

 

[Entchen]

Hiya—It sounds like you are going through the wringer. Good that an action plan is in place while you work to finalize the diagnosis. Depending on how severe the narrowing is, celery could be tricky—but only the juice, with roughage removed, might be OK. You might check with your GI the next time you speak. Take good care!

 

[Cyoung]

Hiya—It sounds like you are going through the wringer. Good that an action plan is in place while you work to finalize the diagnosis. Depending on how severe the narrowing is, celery could be tricky—but only the juice, with roughage removed, might be OK. You might check with your GI the next time you speak. Take good care!

Thanks, but according to my GI, he won’t ever ben able to confirm or finalize the diagnosis.. so I’m just hoping that Skyrizi will really help and I won’t have the side effects

 

[Jo-mom]

Yes juice is good. It's raw celery that isn't okay for strictures.

 

[Scipio]

Thanks, but according to my GI, he won’t ever ben able to confirm or finalize the diagnosis.. so I’m just hoping that Skyrizi will really help and I won’t have the side effects

I don't know about health coverage in other countries, but if you are located in the US it is unlikely that your insurance company will agree to pay for an expensive drug like Skyrizi without a definite diagnosis of Crohn's or another disease that Skrizi is approved to treat.

 

[my little penguin]

Can you get a second opinion at a different hospital ?
A fresh set of eyes can help
Check to see if your diagnosis is a “working diagnosis of crohns” or Crohn’s diagnosis.
Or something else
The diagnosis code is what is used for prescription drugs, procedures and blood draws .
That is what insurance goes by for approval
Most insurance doesn’t permit /approve the most expensive biolgics unless you have tried other lower level drugs or cheaper biologics and failed .
Definitely get a second opinion

fwiw my adult child has had crohns for 13 years but the official diagnosis has been a “working diagnosis of crohns” from his ped Gi to crohns and back /forth depending on the Gi he saw at the time .

good luck

 

[Cyoung]

I don't know about health coverage in other countries, but if you are located in the US it is unlikely that your insurance company will agree to pay for an expensive drug like Skyrizi without a definite diagnosis of Crohn's or another disease that Skrizi is approved to treat.

I’m in Canada, so will see. It is a very expensive medication! So crossing my fingers!

 

[Cyoung]

Can you get a second opinion at a different hospital ?
A fresh set of eyes can help
Check to see if your diagnosis is a “working diagnosis of crohns” or Crohn’s diagnosis.
Or something else
The diagnosis code is what is used for prescription drugs, procedures and blood draws .
That is what insurance goes by for approval
Most insurance doesn’t permit /approve the most expensive biolgics unless you have tried other lower level drugs or cheaper biologics and failed .
Definitely get a second opinion

fwiw my adult child has had crohns for 13 years but the official diagnosis has been a “working diagnosis of crohns” from his ped Gi to crohns and back /forth depending on the Gi he saw at the time .

good luck

Since your son has been a working diagnosis of crohns, is he getting medication for it?

 

[Cyoung]

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Since your son has been a working diagnosis of crohns, is he getting medication for it?

thought of getting a second opinion but my GI kept saying the longer I wait the riskier it gets for me in getting a flare up and ruining my intestines leading to surgery so that’s why I decided to just go ahead with skyrizi

 

[my little penguin]

You can get skyrizi and still go for a second opinion.

My kiddo has been on many meds including 3 biologics with a working dx of crohns
Changed to Crohn’s dx abd back again depending on the Gi he was seeing
He currently is on Stelara plus methotrexate for his crohns and juvenile arthritis.

 

[my little penguin]

Oh and before my kiddo started remicade we started the process of getting a second opinion
He actually started remicade a week before the actually second opinion
Well worth it in my opinion
Fresh eyes even if they confirm things make the process better

 

[Cyoung]

Oh and before my kiddo started remicade we started the process of getting a second opinion
He actually started remicade a week before the actually second opinion
Well worth it in my opinion
Fresh eyes even if they confirm things make the process better

Thanks for all the information and suggestion! I will try to get a second opinion.
Hope the meds your kids on is working well!

 

[Opieshuffle13]

@Cyoung I'm in Canada too. My old health insurance covered 80% of the cost of my Stelara, and Abbvie covered the rest. Now that I'm solo (got downsized in Feb) Abbvie is covering the full cost for a year. Make sure you let your doctor know if you can't afford it. They'll help you get the costs covered.

 

[Cyoung]

Ok!! Thanks for the heads up! I’ve heard nothing back on whether I’m covered or not. I’m not working.. retired and I’m starting my first treatment this coming Saturday at the clinic.

 

[Jo-mom]

Hi, we're in Toronto - my son also does not pay anything for his remicade. 80% covered by plan and Jenson pays for the other 20%. Usually there are coordinators with the drug companies that will help you get set up.

 

[Cyoung]

Hi, we're in Toronto - my son also does not pay anything for his remicade. 80% covered by plan and Jenson pays for the other 20%. Usually there are coordinators with the drug companies that will help you get set up.

Thank you @Jo-mom! No ones said anything to me about costs.. and they just went ahead to schedule my treatment.. so really hoping that I will be 100% covered.

Does your son do the self administered shots at home??

 

[Jo-mom]

@Cyoung - Remicade is an infusion and is always done at a clinic - he goes every 5 weeks and it takes just over 2 hours. Where in Canada do you live? I know in Ontario, most of the Gastroenterologist offices will help you set up with a coordinator. One step at a time. You'll get there.

 

[Cyoung]

@Cyoung - Remicade is an infusion and is always done at a clinic - he goes every 5 weeks and it takes just over 2 hours. Where in Canada do you live? I know in Ontario, most of the Gastroenterologist offices will help you set up with a coordinator. One step at a time. You'll get there.

@Jo-mom I’m in Vancouver. Getting my first infusion tomorrow… praying that all goes well.

 

[Jo-mom]

Good luck! What medication will you be infused with? Let us know how it went.

 

[Cyoung]

@Jo-mom thanks! Ill be on Skyrizi.

 

[Cyoung]

I’m on my second infusion today!
The last month has been ok.. my diarrhea seems to be milder.. it still happens though.
Does anyone know how soon skyrizi is supposed to work?

 

[Bespectacledberries]

I’m on my second infusion today!
The last month has been ok.. my diarrhea seems to be milder.. it still happens though.
Does anyone know how soon skyrizi is supposed to work?

Hi!!! I’m not sure for Skyrizi specifically but most biologics can take 1-3 infusions or about 16 weeks to notice really significant benefits, though some people feel better very fast. It can also depend on if you were being treated before or if this is your first treatment. Since it seems things were very bad and you hadn’t been on any other treatments I would imagine it might take a couple to feel better. It can also take months before things start to feel almost normal. I’m on inflectra and I felt a lot better after my first infusion but I had been on other meds before as well as being on prednisone. Did they start you on that to help manage the flair? Also when you start a biological sometimes the need to change the dose of frequency of infusions to help maintain remission, especially if you notice symptoms worsen between infusions. All of this is important to tell your GI. I was having mini flares between every infusion after about 5 weeks (I go 8 weeks between) and once I told my GI they upped the dose and they stopped.

 

[Cyoung]

Hi!!! I’m not sure for Skyrizi specifically but most biologics can take 1-3 infusions or about 16 weeks to notice really significant benefits, though some people feel better very fast. It can also depend on if you were being treated before or if this is your first treatment. Since it seems things were very bad and you hadn’t been on any other treatments I would imagine it might take a couple to feel better. It can also take months before things start to feel almost normal. I’m on inflectra and I felt a lot better after my first infusion but I had been on other meds before as well as being on prednisone. Did they start you on that to help manage the flair? Also when you start a biological sometimes the need to change the dose of frequency of infusions to help maintain remission, especially if you notice symptoms worsen between infusions. All of this is important to tell your GI. I was having mini flares between every infusion after about 5 weeks (I go 8 weeks between) and once I told my GI they upped the dose and they stopped.

Thanks for sharing.
Before I started skyrizi I took prednisone for two months straight after my last big flare up that happened in May. Since tapering off prednisone, I haven’t had any other medications till I got my first infusion in Sept.
It’s strange.. I never had diarrhea before.. only flare ups that happen every few months to a year. But since i stared skyrizi I’ve noticed a bit of diarrhea every night. Wondering if this will go away.

 

[Bespectacledberries]

Thanks for sharing.
Before I started skyrizi I took prednisone for two months straight after my last big flare up that happened in May. Since tapering off prednisone, I haven’t had any other medications till I got my first infusion in Sept.
It’s strange.. I never had diarrhea before.. only flare ups that happen every few months to a year. But since i stared skyrizi I’ve noticed a bit of diarrhea every night. Wondering if this will go away.

I can’t really say since I’ve never been on it but my experience with inflectra was that it took awhile to have a solid stool. I haven’t really experienced diarrhea outside of my first big flair, even when my inflammation and other symptoms have come back the diarrhea doesn’t. But I was having it before and when I started inflectra and I think it took 2 infusions or 16 weeks to go away. I know everyone is different with this, a lot of people have diarrhea and frequency as a major symptom but personally I struggle much more with constipation and nausea. Because everyone’s body and reaction to medication is so different in my opinion it’s best to talk to your medical professionals as much as possible. But just from my experience if the medication is working the diarrhea should stop soon.