I just got diagnosed what should I ask my dr?

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AmandaH01
Regular Member


Date Joined Jan 2008
Total Posts : 100
   Posted 1/15/2008 6:35 PM (GMT -7)   
I was just diagnosed recently and theres a million things going through my mind...Any advice and suggestions on what I should ask my doctor.

mcleaver1969
Regular Member


Date Joined Jun 2006
Total Posts : 267
   Posted 1/15/2008 6:49 PM (GMT -7)   
I recommend you ask your Dr. what the most aggressive and new treatment is for CD and go that route, bi-pass all of the old CD treatments that just put a temporary bandaid on the disease...be bold and aggressive, make your GI give you the newest and best treatment available. Good luck!
Marci, 38 years young, Rockledge, FL
Dx with Crohn's disease March 2006
Currently on bi-weekly Humira, daily 6mg Entocort, daily 2-3x 5mg hydrocodone (for pain), and daily 75mg Effexor,
plus 3x per day heavy iron supplements for anemia,
calcium supplement, daily multi-vitamin,
Lasix as needed for ankle/feet swelling
Self-proclaimed "recluse"  do to CD  ;)


AmandaH01
Regular Member


Date Joined Jan 2008
Total Posts : 100
   Posted 1/15/2008 6:54 PM (GMT -7)   
That would be a great thing...whats the humira about? I was just reading something about that in another section? What does it do and is it one of the better things? Can anyone answer this for me?

bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 1/15/2008 7:19 PM (GMT -7)   
I would ask my doctor what his/her findings were, and his opinion of the severity of these disease findings. Once that is established, I'd ask him what his treatment plans are. It might be that you have a mild case which can do quite well with some of the older medications. They don't like to pull out the big guns without trying the smaller ammo first. My doctor was required to ensure that all the "lesser" drugs were not effective for me before my insurance would approve remicade (I could have also beem eligible to get Humira-but I'm saving that one up in case the remicade fails.) For some both of these medications are out of their price range (without insurance I certainly can't afford it - the remicade for my weight is over $38,000 per year! ) There's been lots of other posts about insurance coverage which are in the archives. It varies all around the world. Don't be shy to tell him your symptoms - I know it's hard to talk about BM's and mucus and all the wierd and wonderful things that happen with this darn disease, but it's important. Also it doesn't hurt to keep a diary and food log and inform the doctor of relevant issues.

Good luck,

Bev

MaryS
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Date Joined Jan 2003
Total Posts : 1668
   Posted 1/15/2008 7:25 PM (GMT -7)   
I soooo agree with Marci. As I mentioned in my post in your other topic, My Daughter miserably floundered in
health for 4 years with Pentasa and Prednisone. Prednisone just covered up the symptoms in my Daughter's case and it was Holy H*ll trying to wean off the stuff and the symptoms came back full force and sometimes worse. Pentasa alone really did not give her quality of life.

I agree that starting with some sort of more aggressive treatment is the best way to go and I hope your GI will agree. You have 3 young children to take care of and you can't do that if your health is not cooperating. You need quality of life as soon as possible and minimal time trying to regain your health.

AmandaH01
Regular Member


Date Joined Jan 2008
Total Posts : 100
   Posted 1/15/2008 7:40 PM (GMT -7)   
bentwistle said...
I would ask my doctor what his/her findings were, and his opinion of the severity of these disease findings. Once that is established, I'd ask him what his treatment plans are. It might be that you have a mild case which can do quite well with some of the older medications. They don't like to pull out the big guns without trying the smaller ammo first. My doctor was required to ensure that all the "lesser" drugs were not effective for me before my insurance would approve remicade (I could have also beem eligible to get Humira-but I'm saving that one up in case the remicade fails.) For some both of these medications are out of their price range (without insurance I certainly can't afford it - the remicade for my weight is over $38,000 per year! ) There's been lots of other posts about insurance coverage which are in the archives. It varies all around the world. Don't be shy to tell him your symptoms - I know it's hard to talk about BM's and mucus and all the wierd and wonderful things that happen with this darn disease, but it's important. Also it doesn't hurt to keep a diary and food log and inform the doctor of relevant issues.

Good luck,

Bev
The first question and probably only question I asked after the colonoscopy was how severe it was mild, moderate or severe and he said it was pretty severe. I wasn't expecting that. I haven't had my office appointment since that. I will be having that on the 24th. which will be 10 days after the diagnosis. He did a biopsy too I may have been really drowsy still when he told me what that was for..Does anyone happen to know? I know he said something about I had ulcers there as well or something. I was still a little out of it so these are questions I will ask then as well I'm going to make a list so I don't forget.

AmandaH01
Regular Member


Date Joined Jan 2008
Total Posts : 100
   Posted 1/15/2008 7:42 PM (GMT -7)   
MaryS said...
I soooo agree with Marci. As I mentioned in my post in your other topic, My Daughter miserably floundered in
health for 4 years with Pentasa and Prednisone. Prednisone just covered up the symptoms in my Daughter's case and it was Holy H*ll trying to wean off the stuff and the symptoms came back full force and sometimes worse. Pentasa alone really did not give her quality of life.

I agree that starting with some sort of more aggressive treatment is the best way to go and I hope your GI will agree. You have 3 young children to take care of and you can't do that if your health is not cooperating. You need quality of life as soon as possible and minimal time trying to regain your health.
I'm sort of worried now about the prednisone...I'm guessing its addictive or just bad symptoms coming off?

MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 1/15/2008 7:55 PM (GMT -7)   
Amanda,

My Daughter was just one of those patients that did not do well weaning from Prednisone. Some people can do Ok with the wean and my Daughter just happened to be NOT in that category. She would get down to 10mg and holy heck would break out. You may be fine with the weaning process. Sometimes the end part has to be taken very, very slow. Just try not to freak with each drop in dose, you may feel a bit icky for 2-3 days as your body adjusts to the lower dose.

Prednisone is a love/hate med. Love when it brings you relief, hate the side effects and weaning though!

CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 1/15/2008 7:55 PM (GMT -7)   
I'm so sorry to hear of your diagnosis. : (

I would like to add that I, too, agree with Marci. I've been out of work since I was diagnosed October 9th, as I've gone the route of starting out with the little guns, and moving up through the drug ranks. Started with Lialda and Entocort. Very little relieft. Switched out the Lialda for Pentasa. A bit more relief. Started taking prednisone. Complete remission, but then the side effects came on very strong, making me discontinue pred. Now I'm waiting to move up to the next tier next week. So much lost time and lost wages going this route.

Since he has diagnosed you as being a severe case, I definitely think it's worth asking him for an aggressive treatment plan. My only other advice to you is to NOT be shy. Go in there, look him/her right in the eye, and tell him every gruesome detail about every symptom you have, and take an active part in deciding what course is right for you. Do your research. Learn all there is to learn about CD, and all you can about all the different medicines. Go to your office visit as well-educated about your disease and it's treatments as you can possibly be. I hate to say this, but you are going to have this diesease for the rest of your life. The more you know about it and it's treatments, the better off your quality of life is going to be, and the quicker you'll be able to improve it.

God bless.

Edit: I just noticed that CrohnsDaddy is now a forum "Regular Member". Could it be a sign of good things to come?? : )


Just trying to be a "Regular Member".

Post Edited (CrohnsDaddy) : 1/15/2008 7:58:13 PM (GMT-7)


MaryS
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Date Joined Jan 2003
Total Posts : 1668
   Posted 1/15/2008 8:05 PM (GMT -7)   

If you would like to learn more about IBD med treatments, there is information about them on the CCFA website:

http://www.ccfa.org/info/treatment/medications


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 1/15/2008 9:56 PM (GMT -7)   

Hi Amanda,

I just read your other post, where you mentioned your Crohn's is in your terminal ileum. In that case, Entocort might help you.

Some GIs believe it is best to start with the strongest meds first, even though they might be more toxic. Other GIs believe it is best to try the milder but less toxic meds first.  

My daughter is in full remission without side effects on only one pill of Entocort a day, which is intended for people with Crohn's only in the terminal ileum. We prefered to try the milder meds first. (btw, prednisone is indeed nasty stuff, with serious side effects - it often works, but a price is paid) 

Other people manage to do well on other milder meds, like Pentasa, Asacol or Lialda.

www.ccfa.org provides pretty good info

Other info, including diagrams, etc, can be found on the following: 

http://hopkins-gi.nts.jhu.edu/pages/latin/templates/index.cfm?pg=disease1&organ=6&disease=21&lang_id=1  

Post Edited (njmom) : 1/15/2008 10:36:51 PM (GMT-7)


AmandaH01
Regular Member


Date Joined Jan 2008
Total Posts : 100
   Posted 1/16/2008 8:20 AM (GMT -7)   
MaryS said...

If you would like to learn more about IBD med treatments, there is information about them on the CCFA website:

http://www.ccfa.org/info/treatment/medications


I will try to check the medication section out on the site later. It was down when I tried this morning. Thank you.

CraigR
New Member


Date Joined Jan 2008
Total Posts : 4
   Posted 1/17/2008 8:26 AM (GMT -7)   
Amanda,
 
I thought I saw a fairly in-depth posting of yours recently, where you explained your situation (living in Pennsylvania, having children that it's tough to take care of, a husband who doesn't want to move to NY where you think you have more support, etc.)
 
Is this you? I was about to offer some suggestions, as I seem to have recently gone into remission after a really tough few months.
 
If you would like to hear from me, let me know.
 
Craig
(Crosey)

AmandaH01
Regular Member


Date Joined Jan 2008
Total Posts : 100
   Posted 1/17/2008 9:25 AM (GMT -7)   
Yes Craig that would havebeen me that posted that. :-)
CraigR said...
Amanda,
 
I thought I saw a fairly in-depth posting of yours recently, where you explained your situation (living in Pennsylvania, having children that it's tough to take care of, a husband who doesn't want to move to NY where you think you have more support, etc.)
 
Is this you? I was about to offer some suggestions, as I seem to have recently gone into remission after a really tough few months.
 
If you would like to hear from me, let me know.
 
Craig
(Crosey)

Amanda: age 23 happily married for 6 years
Mother to Kirstiana 5, Savannah soon to be 2, Halen 11 weeks
I have had symptoms since a young child but I was FINALLY diagnosed 1/14/2008!
  • Currently taking: Pentasa 500 mg 2 tablets 3 times daily  Darvocet 1 tablet every 6 hours as needed (I can't take due to watching my children it makes me drowsy and sick) Prednisone 60 mg to decrease by 10 mg weekly until down to 2.5mg Ranitidine 300 mg 1 tablet twice daily Women's one a day multi-vitamin with double the calcium once daily

I have no family or friends around me other than my husband and children so I very greatly appreciate this group and i'm hoping to become a regular. You are all great people! (I also need to add my father in law does live fairly close as well..I don't want to leave him out.)

 
 


hipsydipsy
Regular Member


Date Joined Mar 2007
Total Posts : 58
   Posted 1/17/2008 1:46 PM (GMT -7)   

Hi Amanda,

 I understand where others are coming from when they say you should bypass all the old treatments and go for the new biologic agents such as humira or remicade,

**however**

These treatments are last resort, when you are non-responsive to other conventional treatments such as prednisone. They are highly toxic, and have some very serious side effects (however rare getting them may be). I've had severe crohn's for nearly 6 years now and I've been on nearly all the meds, including having surgery. However, I always try to hold out until I ***really*** need the biologic agents, so I don't build up some sort of resistence to them by using them too much. Moreover, as I said, some of the side effects can be very serious, and I don't think people should suggest using these drugs as a "shortcut" to the "good drugs". But if you do try other, weaker meds and they still aren't working, then by all means, these biologic treatments can be a saviour.

Good luck with the treatments etc though! You won't know yourself once you start getting some relief from the meds! It's just a matter of finding what ones work for YOU!


AmandaH01
Regular Member


Date Joined Jan 2008
Total Posts : 100
   Posted 1/17/2008 3:10 PM (GMT -7)   
hipsydipsy said...

Hi Amanda,

 I understand where others are coming from when they say you should bypass all the old treatments and go for the new biologic agents such as humira or remicade,

**however**

These treatments are last resort, when you are non-responsive to other conventional treatments such as prednisone. They are highly toxic, and have some very serious side effects (however rare getting them may be). I've had severe crohn's for nearly 6 years now and I've been on nearly all the meds, including having surgery. However, I always try to hold out until I ***really*** need the biologic agents, so I don't build up some sort of resistence to them by using them too much. Moreover, as I said, some of the side effects can be very serious, and I don't think people should suggest using these drugs as a "shortcut" to the "good drugs". But if you do try other, weaker meds and they still aren't working, then by all means, these biologic treatments can be a saviour.

Good luck with the treatments etc though! You won't know yourself once you start getting some relief from the meds! It's just a matter of finding what ones work for YOU!

This is true. I am trusting my gastroenterologist at this point. Since i'm just starting out with the treatments and I have a pretty severe case of it i'm not sure when to expect relief. I am just trying to take it one day at a time. Now I feel I have a better idea on what type of questions to ask him on the 24th I am feeling a little bit more at ease. I appreciate all of the help and opinions.

Amanda: age 23 happily married for 6 years
Mother to Kirstiana 5, Savannah soon to be 2, Halen 11 weeks
I have had symptoms since a young child but I was FINALLY diagnosed 1/14/2008!
  • Currently taking: Pentasa 500 mg 2 tablets 3 times daily  Darvocet 1 tablet every 6 hours as needed (I can't take due to watching my children it makes me drowsy and sick) Prednisone 60 mg to decrease by 10 mg weekly until down to 2.5mg Ranitidine 300 mg 1 tablet twice daily Women's one a day multi-vitamin with double the calcium once daily

I have no family or friends around me other than my husband and children so I very greatly appreciate this group and i'm hoping to become a regular. You are all great people! (I also need to add my father in law does live fairly close as well..I don't want to leave him out.)

 
 


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 1/17/2008 6:46 PM (GMT -7)   
I would also ask how to best reach him or her, is there someone to help with diet issues, and how soon you will be reevaluated.
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now just taking Glycolax, Ultra Fiber Plus, probiotics, and vicodin as needed. Experimenting with gluten-free diet per naturopath's tests.


AmandaH01
Regular Member


Date Joined Jan 2008
Total Posts : 100
   Posted 1/17/2008 8:09 PM (GMT -7)   
Thanks for the excellent questions! :-) I am writing them down already so I don't forget anything I want to ask... For being 23 years old I have a memory of someone with amnesia.
yogaprof said...
I would also ask how to best reach him or her, is there someone to help with diet issues, and how soon you will be reevaluated.


Amanda: age 23 happily married for 6 years
Mother to Kirstiana 5, Savannah soon to be 2, Halen 11 weeks
I have had symptoms since a young child but I was FINALLY diagnosed 1/14/2008!
  • Currently taking: Pentasa 500 mg 2 tablets 3 times daily  Darvocet 1 tablet every 6 hours as needed (I can't take due to watching my children it makes me drowsy and sick) Prednisone 60 mg to decrease by 10 mg weekly until down to 2.5mg Ranitidine 300 mg 1 tablet twice daily Women's one a day multi-vitamin with double the calcium once daily

I have no family or friends around me other than my husband and children so I very greatly appreciate this group and i'm hoping to become a regular. You are all great people! (I also need to add my father in law does live fairly close as well..I don't want to leave him out.)

 
 

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