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Brand New and overwhelmed

Brand new to this forum. My daughter (15) was just diagnosed with Crohn's a week ago after an 11 day hospital stay. She had experienced stomachaches off and on for several years, but becoming much worse lately. The week before she went into the hospital she had horrible pain every time she ate. Going in, they thought she had a ruptured appendix, but more studies led to the dx of Crohn's. She also got a blood transfusion for severe anemia and was put on TPN for a week.

We haven't yet had our 1st appt with the GI, and I'm trying to use this time to gather info so I can be as informed as possible going into the appointment. The GI we saw in the hospital wants to start her on Remicaid or Humera right away. I'm feeling like those are really "heavy" drugs, and a long term committment. I'd like to start slow, and see what she NEEDS, instead of just diving in deep. Along with that, friends have suggested trying Aloe Vera supplements since there are very few serious side effects.

Any tips or pointers for me? Any questions you wish you had asked at the beginning of your journey? Most of the time I feel completely clueless as to this whole thing!
 
I think a lot of doctors (this is what my GI told me) prefer to use the "heavy duty" drugs first (a top down approach?) because research has shown if they use the older drugs the patients just keep getting worse. I think it's always worthwhile to explore your options, but especially considering how severe her disease has become you may need to keep the Remicade or Humira in mind. I also think this disease is a lot easier to keep in control than to get under control, if that makes sense.

I'm sorry to hear about your daughter's diagnosis. I say if you think the aloe vera supplements will help, there's not really any reason to not take them.

Do they have her on anything right now other than the TPN? Did she end up having surgery?

Welcome to the forum.
 
I think a lot of doctors (this is what my GI told me) prefer to use the "heavy duty" drugs first (a top down approach?) because research has shown if they use the older drugs the patients just keep getting worse. I think it's always worthwhile to explore your options, but especially considering how severe her disease has become you may need to keep the Remicade or Humira in mind. I also think this disease is a lot easier to keep in control than to get under control, if that makes sense.

I'm sorry to hear about your daughter's diagnosis. I say if you think the aloe vera supplements will help, there's not really any reason to not take them.

Do they have her on anything right now other than the TPN? Did she end up having surgery?

Welcome to the forum.
Thanks for the welcome!
Right now she is on Prednisone 40 mg twice/day Prevacid twice/day and iron. While in the hospital she didn't have to have surgery as such. They drained some pockets of abcess and fluid from her lower abdomen, which initially they thought were from the ruptured appendix, but later decided it was "leaking" from a perforated bowel. They didn't do any other surgeries. The TPN was stopped Sunday before she was discharged on Monday.

It was my understanding that with the Remicade and Humira, once you start, you really need to stay on the drugs long term. If you went off and tried to re-start that your body would most likely not respond the 2nd time around. Good to know that things are easier to KEEP under control than get under control.

For sure I don't want her to go back to where she was. Right now she's still having pain and just plain doesn't want to eat. So hard.
 
That's awful. I hope you find a treatment that works for her.

Honestly all of the drugs you take for this disease you should stay on "long term." Crohn's cannot be cured and must be medically managed. Really the only reason you should stop a drug is if you "fail" on it and are going to try something else. But yes, once you stop taking a biologic you started, you can develop antibodies to it.

Hopefully in the future we will have a lot more options.
 

DustyKat

Super Moderator
Hi Nancy and :welcome:

I'm so sorry to hear about your daughter.

As diesanduhr has said, the more recent train of thought is the top down approach. Hit hard and fast, get them into remission and do your utmost to keep them there. Also the advice given in the above post is spot on too!

Is your daughters CD in her ileum?

Has your daughter had tests to rule out any fistula's since they suspect her abscesses are a result of perforation?

It's okay Nancy, we all feel the same way at the outset so rest assured you aren't the only one feeling like that! :)

How is she coping with the Prednisone being in a split dose? Most find it better to take in a single morning dose.

Sorry for all the questions...:eek2:

Dusty. xxx
 
HI Nancy, welcome to the forum, i am sorry to say Crohn's is a long life commitment. if your daugther is in that severe of shape then remicaid or humera which ever one you or your GI pick is the way to go. sometimes the other drugs take a while to kick in. in the mean time did the doctors prescribe any predisone for the flare up?. Usually they do, if there is any inflammation, it works fast on the inflammation. I have had crohn's for 21 years now and the first sign of inflammation that is the very drug i have been put on. i hope your daughter gets the best medical treatment possible and it's good to catch it in the early stages. Aloe Vera is only supplement, not a drug your daughter may need something stronger. then just supplements. i take supplements but, it didn't stop my flare up from happening 4 weeks ago and i am still battling it out. Just see what the GI specialist has to say about the drugs and then decide. best wishes.

scott
 
Thanks for all the replies. Maybe part of it is just me getting my mind around the whole thing. I was diagnosed with breast cancer in January of this year, and working through that was tough. To now find that one of my kids is dealing with something which also will "never go away" is difficult. Part of me is still in denial I guess. I honestly had no idea HOW sick she was, until they put in a PICC line and did the transfusions and TPN--that hit right through the denial.

She doesn't love the split dose of prednisone, but is doing great. She actually HATES taking pills, and unless they are small, gags and chokes. She is doing a stellar job of taking her meds.

They told us that her entire GI tract is "inflamed" but that the Crohn's is in the last part of her small intestine. They didn't do any tests that I know of, specifically to look for a fistula, however they did a lot of "looking" for other things. She had 2 abdominal CT's, an endoscopy and colonoscopy as well as an Upper GI series with small bowel follow up. As I understand it, they looked at every inch of that digestive tract.

I appreciate all the info. These are such uncharted waters for our family!!
 
I also just want to say it's totally natural and common to feel overwhelmed by all of this! Take it one day at a time. The forum will always be here to offer support. We even have a place specifically for venting and a forum for parents with children who have IBD.
 
I just have to pipe up and say that I don't agree at all that patients keep getting worse on the older drugs. I have fistulizing Crohn's but I've controlled it for 28 years on ASA. My setbacks are most often due to compliance.

You're right that Humira or Remicade are bigger commitments than the "pill" drugs. I'd ask your doctor why he wants to jump to the nuclear options first. One issue with the biologicals is that you really can't stop and start. If you go with one, stopping will increase the risk of allergy if you try to go back.

All this said, your daughter's condition may be so severe that 6MP or ASA won't work fast enough, but then inducing remission with steroids should be feasible.

I am NOT a doctor, but if it were my daughter I'd get at least a second opinion before starting a biological like Remicade or Humira as a first drug.

Good luck and DON'T be intimidated by any doc. YOU are your daughter's key advocate.
 

DustyKat

Super Moderator
Her Crohns is in the terminal ileum then.

When is the GI's appointment?

Keep a close monitor on her pain and if it continues or worsens then have it checked out. I would specifically ask that they check for a fistula but if her tract is very inflamed they can be missed as they are often only a result of a microperforation. Continued pain may be a sign that the meds aren't working or that another abscess has formed. Unfortunately fistula's originating in the ileum are notoriously difficult to heal with drugs and normally require surgery.

Dusty. xxx
 
I guess i glossed that over. I agree that ASA is probably a weak option. I'm not sure about the other drugs. My disease and my daughter's are located differently.
 
Her Crohns is in the terminal ileum then.

When is the GI's appointment?

Keep a close monitor on her pain and if it continues or worsens then have it checked out. I would specifically ask that they check for a fistula but if her tract is very inflamed they can be missed as they are often only a result of a microperforation. Continued pain may be a sign that the meds aren't working or that another abscess has formed. Unfortunately fistula's originating in the ileum are notoriously difficult to heal with drugs and normally require surgery.

Dusty. xxx
Her GI appt isn't until the 29th "soonest we can get you in" but we see her primary care on Monday. I'm debating asking about getting referred to someone else. The GI that saw us is a long drive from us, and the fact that they can't see her until 3 weeks after hospital discharge also is concerning to me. In a lot of ways I'd like to see someone else, then compare what the 2 have to say, before committing to treatment with anyone. Going to ask about that Monday.

Actually we kind of feel like we are just floating along till that GI appointment. Obviously if she starts getting fevers or has terrible pain, we'll head to the ER, but the whole in between scenario is what is uncertain. Today she told me that all food bothers her, which has got to be depressing.
 

Crohn's Mom

Moderator
Hi Nancy and welcome :)

I'm so sorry to hear of your daughter's diagnosis.
I know you must be feeling very overwhelmed and beginning on information overload too quickly.
My only advice is to research, research, and research some more ~ and you have found a great place to start doing that right here, with wonderful and very knowledgeable people who have first hand experience.
Ultimately though, it is you and your daughter that have to decide what your best plan of action will be and which medications you are willing to try.

Seems like the others have already began to direct wonderfully.
Best of luck to you and I hope you stick around and let us know how everything goes, as it goes :)
hugs,
hang in there mom!
~T~
 
I just have to pipe up and say that I don't agree at all that patients keep getting worse on the older drugs. I have fistulizing Crohn's but I've controlled it for 28 years on ASA. My setbacks are most often due to compliance.

You're right that Humira or Remicade are bigger commitments than the "pill" drugs. I'd ask your doctor why he wants to jump to the nuclear options first. One issue with the biologicals is that you really can't stop and start. If you go with one, stopping will increase the risk of allergy if you try to go back.

All this said, your daughter's condition may be so severe that 6MP or ASA won't work fast enough, but then inducing remission with steroids should be feasible.

I am NOT a doctor, but if it were my daughter I'd get at least a second opinion before starting a biological like Remicade or Humira as a first drug.

Good luck and DON'T be intimidated by any doc. YOU are your daughter's key advocate.
or the docs trying to avoid a surgery? Remicaid and Humira are known as fistula and RA helpers.
 
Location
NY
Hi Nancy - Welocme. I am glad your daughter is on prednisone as it seems to help everyone with Crohn's. I would think your doctor is making a choice based upon the severity of your daughter's condition. My gut instinct is that your daughter needs real medicine at this point and not only supplments like aloe. There is soooooo much alternative information our there, it is easy to get lost in it all.
 
Muppet - I was just sharing what my GI said the research shows. Obviously individual experiences will vary. A second opinion is never a bad idea, IMHO.

Nancy - It sounds like your daughter has been through the ringer! I hope they find a treatment that gets her under control but still allows you peace of mind.

It sounds like your family has been through a lot lately. I hope the future brings happier trails.
 
So another question that we've been tossing around. . . . we've been referred to the pediatric GI who saw her in the hospital. I'm interested in a
2nd opinion, my daughter doesn't LOVE him, and the office appears really busy (couldn't get us in for a week after we wanted to be seen). Wondering if we should look for a regular GI since she is almost 16. At what point would the pediatric GI not see her anymore? Since she will obviously need to be followed for years, would it make better sense to seek out a regular GI now?

Our insurance approved the pedi GI, but the authorization actually expires before they can see us. go figure. Thinking that since we have already seen this guy and are not sold on him, maybe we should ask for an auth for someone else.
 
It may not be the norm where you are, but a week for a non emergency sick visit is pretty typical here.
Should have clarified :) We were told to follow up with the GI two weeks after her hospital discharge, but they won't be free to see her for 3 weeks. We have enough prednisone for a month, but I just feel like we are kind of free falling for these weeks till we see someone and make a plan.
 

DustyKat

Super Moderator
So another question that we've been tossing around. . . . we've been referred to the pediatric GI who saw her in the hospital. I'm interested in a
2nd opinion, my daughter doesn't LOVE him, and the office appears really busy (couldn't get us in for a week after we wanted to be seen). Wondering if we should look for a regular GI since she is almost 16. At what point would the pediatric GI not see her anymore? Since she will obviously need to be followed for years, would it make better sense to seek out a regular GI now?

Our insurance approved the pedi GI, but the authorization actually expires before they can see us. go figure. Thinking that since we have already seen this guy and are not sold on him, maybe we should ask for an auth for someone else.
I think the age for paediatric can be a bit grey. In Australia the cut off is 16 but I know of paeds that are still seeing patients up until 25 but only in their rooms, not in hospital.

My daughter was diagnosed when she was 14 1/2, we live in a rural area and for us to see a paediatric GI would have mean't travelling 600kms. I certainly would have made the trek if need be but I felt what was the point of having a paed when she was going to have change in 18 months, so we went with a regular GI from the outset. I have never regretted the decision.

Since you don't particularly like the current GI then I would be seeking out a referral to someone else. You need to feel comfortable and have trust in the person that is looking after child's health. If you can't walk out of that doctors office or have him/her walk away from your bedside and have faith and no doubts about what they said and the treatments they prescribe then they are not doc for you or your child. I know there are many doctors that are brilliant but don't have much of a bedside manner but that still doesn't cut it if you can't talk to them and/or they treat you like they doing do you a favour.

Good luck!

Dusty. :heart:
 
Listen to Dusty!

Gah, I wish I could be seen within a week of a non-emergency problem by my GI... If I talk to the regular scheduler it will take MONTHS to get in to my GI. If I talk to his assistant and if it's a pressing matter they usually make an effort to get me in sooner, but it still takes a while.

Should I be looking for a new GI clinic? I thought this was the norm!
 

DustyKat

Super Moderator
Should I be looking for a new GI clinic? I thought this was the norm!
I think a lot depends on where you live, but having said that I do place a lot emphasis on accessibility when looking for a any doc and by that I don't just mean getting an appointment.

I live a long way from a capital city or any town of a reasonable size that would have specialists. In the city there doesn't seem to be the wait there is larger regional centres so to see specialists in our region can be a bit of a waiting game if it is routine. I have never had any problem getting the kids in to see the GI but they have all been planned visits. He is 3 hours away BUT I or the GP can ring him any time we have concerns, he even rang me when Matt was in hospital and he gave me his mobile number. The ability to able to speak to the specialist is at the top of my list because not only does it often allay your fears there and then but it very often means you don't need to go and see them in person.

Diesanduhr, I think if you feel that the wait is too long or they aren't doing enough to fit you ASAP then I would start looking around. Lord only knows having to wait when you have issues is bad enough but what is the stress of waiting doing to you as well, ugh.

Dusty. :heart:
 
My son was diagnosed with Crohn's at age 16 and he started out seeing a regular Gi while he was in the hospital. After a few weeks this doctor decided that he wasn't comfortable treating him so he sent him to a pediatric GI. Well, now he will turn 18 next week and the pediatric GI says that his will send him back to the doctor that he started out with. I'm not sure that I want to go back to him since he is only a year and a half older than he was when he started out with this guy and he wasn't comfortable treating him. Anyway, I said all that to say that you might want to ask the pediatric GI what his policy is on how long he will see her. If he'll only see her until she's 18 you might want to go to someone else because she'll be 18 before you turn around!
 
My son was diagnosed with Crohn's at age 16 and he started out seeing a regular Gi while he was in the hospital. After a few weeks this doctor decided that he wasn't comfortable treating him so he sent him to a pediatric GI. Well, now he will turn 18 next week and the pediatric GI says that his will send him back to the doctor that he started out with. I'm not sure that I want to go back to him since he is only a year and a half older than he was when he started out with this guy and he wasn't comfortable treating him. Anyway, I said all that to say that you might want to ask the pediatric GI what his policy is on how long he will see her. If he'll only see her until she's 18 you might want to go to someone else because she'll be 18 before you turn around!
And that's what happened with us. They all jump in to do scops and procedures, but routine visits to maintain, well..not profitable enough. Thanks to our regular GI who let my daughter(17 yo back then) to get admitted and have her surgery done by a doc he suggested in grownups hospital. BTW they were ready to kick us out just the morning before her surgery and transfer to children's hospital. I guess every situation is different and totally depends where you live and what insurance (if any) you have.
 

Crohn's Mom

Moderator
And that's what happened with us. They all jump in to do scops and procedures, but routine visits to maintain, well..not profitable enough. Thanks to our regular GI who let my daughter(17 yo back then) to get admitted and have her surgery done by a doc he suggested in grownups hospital. BTW they were ready to kick us out just the morning before her surgery and transfer to children's hospital. I guess every situation is different and totally depends where you live and what insurance (if any) you have.
I can ditto that !
No one would touch my daughter here locally, where we live, until she was 18! Too afraid of being sued! Thankfully, I found the Mayo clinic and they weren't scared of her age and took her on immediately. I know in my heart those surgeons and docs, that were more worried about liabilities, are a big reason why Gab was as bad as she was inside when she finally did have surgery :frown:
 
srry to hear about your daughter, usually when first diagnosed it is the toughest part to deal with. my daughter was diagnosed w/ crohns the day after her 13th b-day and I felt the same way you do. she started off on flagyl, prednisone and 6mp. she has been in remission now for 7months and is only on 6mp. I know this is a hard time for your family but things do get better as you learn more about the disease and your daughters needs. doctors over-looked her conditions many times but I always knew something deeper. I had to take the initiative and told doctors she wasnt leaving the hospital until we knew what was wrong and finally got answers. I switched providers and now me and my daughter have a great relationship w/ her doctor. my point is, doctors are not always right and if you have a gut feeling then always go w/ your mothers instinct. I also think its very important to have a good relationship w/ your doctor & if your daughter isnt comfortable w/ him, maybe you should try looking for another. but the most important thing right now is to get your daughter feeling better & get the treatment she needs. hope she gets better soon. Good luck & best wishes, you will make it through this :)
 
So we saw the primary care today, and it appears that the pediatric GI we saw in the hospital is the ONLY one on our insurance, unless we travel to a large children's hospital about 40 mins away. I guess for now, we stick with this guy. And all of you who gave your experiences with regular vs. pedi GI were right--no adult doc will take her till she's 18.

I'm still not feeling good about starting with Remicade--just feel like they are starting out heavy. I'll be asking the doc, but is it unreasonable to ask to start with 6mp? What would be the difference between the two, treatment wise? My daughter would much rather a med by mouth, than a shot or the infusion, I'm looking at side effects long term. Any input on that?
 
We used to travel 40 min. Now we travel 3 hours. You do what's in the best interest of your kids, not what's convenient.
 
Also, Remicade will induce a remission while 6MP generally will not. You may need steroids to induce the remission while the 6MP ramps up, but it's not an unreasonable option to discuss.
 
We used to travel 40 min. Now we travel 3 hours. You do what's in the best interest of your kids, not what's convenient.
I completely get that, and convenience isn't on the radar here. Between her follow ups and mine, the calendar is full. Just sad that the choices are so limited. Maybe I need to adjust my thinking to: "so happy that we have health care, and there is a provider available to us".
 
You are so right. I worked as a nurse for 10 yrs and a bad doc can really do damage! I read some of your Sarah's story. She has been through so much, and it sounds like you have seen some of the really bad doc's out there. The pedi GI we had in the hospital isn't "bad" that I know, and I've actually only had 3 encounters with him. Just kind of bummed that he is essentially THE choice. Who knows, maybe now that I have done some reading and have more intelligent questions to ask, I'll like him better.
 
So we saw the primary care today, and it appears that the pediatric GI we saw in the hospital is the ONLY one on our insurance, unless we travel to a large children's hospital about 40 mins away. I guess for now, we stick with this guy. And all of you who gave your experiences with regular vs. pedi GI were right--no adult doc will take her till she's 18.

I'm still not feeling good about starting with Remicade--just feel like they are starting out heavy. I'll be asking the doc, but is it unreasonable to ask to start with 6mp? What would be the difference between the two, treatment wise? My daughter would much rather a med by mouth, than a shot or the infusion, I'm looking at side effects long term. Any input on that?
Your daughter will get a relief much sooner with Remicade, especially with fistulas and RA. It takes some time(2-3 month) with 6-mp to get into system and start its anti-Crohns war. There are no good meds. It's your choice in this battle: long term side effects vs remission.
Nancy! Don't hesitate to ask your doctor any questions.I used to write them down and pick on his brains at the end of appointment. Good luck!
 
Had our first "out of hospital" GI appt today!! The GI didn't want us waiting the extra week and apparently came in on his day off to see several patients. I was so very relieved to hear from my daughter, after the appointment "I think I really do like this doctor". My husband went with us, and liked him too.

Sounds like we will be starting on Remicade as soon as insurance gives the go ahead and we get everything set up with an infusion center. I was really surprised to hear that after the first infusion, she can get the rest at home?! Home health nurse comes out and sets it up. Sounds great to me! Her doc seemed to want her to start on Humera, but left it up to her. She really didn't want shots, so went with the Remicade. I'm just relieved that everyone is satisfied with the doc, and that we are moving forward!
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
I'm glad you've found a GI you all like! That is the first step to placing your daughter on a sustainable path. As far as ped/adult GI questions...there are separate licensing requirements that restrict doctors. Some doctors are not licensed to treat both.

I don't think I've seen anyone else taking Remi at home but I'm sure that will make it much more comforting to her and you too! That's great!
 
I was really surprised to hear that after the first infusion, she can get the rest at home?! Home health nurse comes out and sets it up. Sounds great to me!
Nancy,
Just make sure home health nurse is ready with the equipment in case she has an allergic reaction. I'm sure they have that covered, just thought I'd mention it. That's awesome if it all works out to be in the comfort of your own home...maybe that's new in the Remi world.
 
Nancy,
I went through the same thought processes as you before putting Garrison on Remicade. I went and got a second opinion and the dr(2) agreed on the treatment. While Garrison and I both loved the second dr and we were willing to make the 1.5 hr drive, the dr(2) himself said to stay with the closer dr. He said the closer you are to the treatment center and hospital, the better.
The Remicade is working for Garrison, he has more energy and has been gaining weight. I hope it works for y'all as well.

Take care,
Vicky
 
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