Take meds or not

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haulmark7
New Member


Date Joined Mar 2010
Total Posts : 11
   Posted 3/19/2010 5:19 PM (GMT -7)   
Hi all,
I am a newbie,
I was diagnosed in 2005 with CD- after a severe pain in my hips- turned out to be sacroiliitis!  My joints have been good really- but recently my CD has started acting up which is new to me!  I rarely have diarrhea-but plenty of abd pain.  Especially after eating.  The stabbing pain sometimes wake me at night.  Of course some days are better than others.  I tried ASACOL at christmas time-but had terrible diarrhea and cramps after taking it.  The first flare got better on it's own after 4 weeks.
Now I am having symptoms again, yet affraid to take Entocort which I hace a prescription for -not sure If I should try and ride it out- If I take Entocort will I be on pills the rest of my days?
Any input ?

debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 3/19/2010 8:02 PM (GMT -7)   
Entocort? Why be afraid of entocort? Side effects are barely noticeable. The only thing I ever noticed was a week of upper back pain at most.

Entocort tends to work well for most people.

Why ride out a flare? After having this disease so badly, I learned that med free is just not acceptable.
Male, 22. Diagnosed with Crohn's officially since 2001.. Osteoporosis, Generalized Anxiety Disorder, Chronic Anemia.

Medications Used: Remicade, Humira, Cimzia, 6-mp, Pentasa, Flagyl, Prednisone, Zifaxan, Entocort,
TPN (Total Parenteral Nutrition), The whole nine.

Current: Methotrexate Injection, Entocort EC, Vitamin D, Fentanyl 25mcg / 72hrs - Zofran - Folic Acid
Currently On SSDI


pimfram
Veteran Member


Date Joined May 2009
Total Posts : 506
   Posted 3/19/2010 9:09 PM (GMT -7)   
Trying to tough it out isn't a good idea. I did that for about a year before I was finally diagnosed and ended up needing surgery 2 years after. All you'll end up doing is let more and more damage occur, which is definitely not what you want. Entocort is pretty mild stuff, compared to the higher-up drugs. Duration of taking a drug depends on how long/well your Crohn's reacts to it. It may work for you for 6 months or 20 years, it's impossible to say for sure.
Diagnosed with CD July 2007
Currently on Remicade, Imuran, probiotics, folic acid, multivitamin.
Resection December 2009

Amor fati - Nietzsche


nightside of eden
Veteran Member


Date Joined Sep 2009
Total Posts : 552
   Posted 3/19/2010 9:23 PM (GMT -7)   
take the meds, not a good idea to tough it out

Prayer247
New Member


Date Joined Mar 2010
Total Posts : 10
   Posted 3/19/2010 9:54 PM (GMT -7)   
I was diagnosed in 07 and was given pentasa. I took it for 2 weeks and said..."I am not going to live a life taking 11+ pills a day." So I didn't....... by the end of 09 I was thinking you idiot take the meds. So.... I took them.. I only took the half dose that was mentioned I could go to after I had taken it for awhile. AND I WAS DOING BETTER! Since taking them I very very rarely have any problems. Sure there are mild symptoms (if even at all).... But 1 thing I do know.... I'm not cramping.

I say take the meds!! It may take time to figure out what is right for your body and if it doesn't KEEP A JOURNAL. Then discuss with your doctor a different thing. That is what I would do. Right now I'm the opposite though.... I'm suffering severe hip pain & my CD is good.

You will do well. Pray you figure it out soon as to what your body needs to make you feel at ease & better. Hate to say it but... "Trial & Error, trial & error".... You can get through it!
"It's 1 health issue after another so quickly. I feel like I'm losing my mind!"
 
Diagnosed Feb. 2007 w/Crohn's
6 erosions on small intestine 2010
1 flat polyp removed 2010
Asthma 1992 (found out by blowing a hole in my lungs air was trapped under my skin- sounded like rice crispies crackling)
Swollen & Painful hip & knees!! NON STOP!
------------------------------------------------------------------------------------------------------------------
Epidural Steroidal Injection C4&C6 herniated disks April 2007
Tonsilectomy/Adnoidectomy & Tubes Sept. 2007 @ 30yrs old (DO NOT recommend for any adult)
Partial meniscus removal March 2009 (Still not 100% recovered)
___________________________________________________________________________
Macrodantin-daily for 3 months (UTI), Pentasa-8daily for 1month & 4daily thereafter, Hyoscyamine-As needed for abdominal pain


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/20/2010 9:03 AM (GMT -7)   
Well if you want your Crohns to continue getting bad, then don't take the meds. I have had this dd for nearly 35 years and I once didn't want to take meds either. I ended up with an emergency resection which was quite traumatic for me. You have a chronic and incurable bowel disease that must be treated at all times or you will constantly be in misery. Take your meds and get on with your life. Hugs.
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

newfoundsun
Regular Member


Date Joined Nov 2009
Total Posts : 145
   Posted 3/20/2010 9:51 AM (GMT -7)   
Hi HaulMark!  Yes, meds work for some people.  For others they don't.  I'm new to this disease as well, so I can't give you advice based on years of living with this disease.  Just remember that this is YOUR body, and to do what YOU think is best.  Of course talk to your doctor(s).  I'm choosing to take some time to look at alternate/complimentary methods, before deciding on taking meds.  My Crohn's though is mild, so I am thankful I can do that.  Not sure when I will need to get on the meds, but I'll cross that bridge when I come to it!
newfoundsun
 
http://www.newfoundsun.wordpress.com/  (my blog about this journey I have just started)
 
CD diagnosed 11/12/09
Seeing a Naturopath and modifying my diet, so far


haulmark7
New Member


Date Joined Mar 2010
Total Posts : 11
   Posted 3/20/2010 8:21 PM (GMT -7)   
Well, today I took my first dose of Entocort!  Not sure why but no MAJOR cramping today!  Thanks to all those who have responded to me.  I appreciate the support.  I just hope things go well.  I see my GI on thursday... 

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 3/21/2010 2:26 AM (GMT -7)   
newfoundsun, that is dangerous advice to give. Medication works for everyone with this disease but you have to find the right medication. One thing I can guarentee you as one who has had this disease for a long time is that not taking medicine does not work for anyone in the long run. Some of the alternate therapies may work for a while but the disease will will eventually if not treated medicinally. No one likes taking pills everyday or going in for an infusion every month like I do, but this is part of the fight. You may feel like your disease is mild now because it is not giving you severe pain or 20 trips to the bathroom but that does not mean damage is not being done.
Haulmark7, I am glad that you came to your senses and tried the entocort and are now treating your disease. It is so hard to emotionally accept that you need medication to feel good and everyone of us go through phases that we think that we can do this on our own but you have to trust the doctors and people who have gone to school for this. You will find a bad doctor from time to time, but the majority of doctors have your best interest at heart and will do anything you help you achieve remission. It is ok to add naturopath items to your regime but they can not replace medication. This disease takes diet, exercise and MEDICATION to treat it. Any reputable naturopath will tell you the same thing. In my home state there is a naturopath hospital that is well known for doing great things for people with chronic disease but on their website there were two conditions that they list as mandating the combination of western medicine to their treatment, cancer and crohn's disease. I was sad when I first read this as I was referred to them by so many people but then I realized that I was doing the right thing. I don't have all the answers but this is one I do have.

Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 3/21/2010 5:37 AM (GMT -7)   
Take the meds!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications:Humira,  Asacol, FolicAcid,  Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 3/21/2010 6:25 AM (GMT -7)   
I definitely recommend taking your medication. I was just diagnosed in February because of chronic pain in my small intestine. Dr prescribed 2 lailda a day and that wasn't cutting it. After three weeks called the drs office to let them know because at that point I believe I gave the dosage a fair shot at working. They kept me on lialda but upped the dosage to 4 a day and put me on steroids for a week. I was not thrilled about the steroid but it did work. Within the first day the raw pain was gone. I am still dealng with some cramping after I eat and am starting a food journal to see if I can figure out the main trigger for that. I am keeping my fingers crossed the 4 lialda does the trick as today is my last day of steroids. I am praying this knawing raw pain does not return. I will gladly take medication to get rid of this pain if the dr feels it is right for me. I also believe in diet, exercise and supplements but I would never forgo meds and just do that. I had mild crohns apparently for 8 years but everyone thought it was IBS so I am an example of how this disease can progress on its own without meds to keep it in check. I am still considered a mild case and I hope the first line of meds continue to work for me. I did not want to be on medication but I really think that is the best course with diet and living well as a supplement to it not in place of it.

aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 3/21/2010 6:57 AM (GMT -7)   
Talk to a doctor please..no offense but a chatboard moderator is no doctor. Each person is different and expert to their situation.
 
 
14. Do not disrespect moderators.  Be respectful in both the forums and any private communications with moderators.  Moderators are volunteers that donate many, many hours of their own time to help in the forums and chat rooms.  Violations of this rule will not be tolerated.

Post Edited By Moderator (Nanners) : 3/21/2010 8:59:21 AM (GMT-6)


newfoundsun
Regular Member


Date Joined Nov 2009
Total Posts : 145
   Posted 3/21/2010 7:49 AM (GMT -7)   
That's all I'm saying.  No person here is an expert on what YOU must do.  I have no illusions that I will never have to take drugs.  But I am glad to have some time to get some of the other things in check before I go that route.  My advice is to simply be your own advocate, because in the end, it is YOUR body and life.
newfoundsun
 
http://www.newfoundsun.wordpress.com/  (my blog about this journey I have just started)
 
CD diagnosed 11/12/09
Seeing a Naturopath and modifying my diet, so far


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/21/2010 8:05 AM (GMT -7)   
Aoccc I have NEVER claimed to be a doctor. I like you am a member here and I am posting MY opinion. One we all are all entitled too. Newfoundsun, I have mild Crohns too. And to keep it mild, I watch my diet, and take MY meds. I personally believe that both should be used in conjuction with the other, that's was I personally believe. But its all on you on what you want to do, and I hope it works for you. The original poster asked for all of our opinions, and we all shared with him our thoughts. JMHO
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

newfoundsun
Regular Member


Date Joined Nov 2009
Total Posts : 145
   Posted 3/21/2010 9:04 AM (GMT -7)   
Thank you Nanners.  I also believe this should be a safe place to share opinions.  I certainly didn't mean to offend anyone, and I am sorry if I did!  I just wanted to clarify MHO, seeing how this is such an important topic with Crohn's. 
 
Have a great day everyone!
newfoundsun
 
http://www.newfoundsun.wordpress.com/  (my blog about this journey I have just started)
 
CD diagnosed 11/12/09
Seeing a Naturopath and modifying my diet, so far


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 3/21/2010 9:37 AM (GMT -7)   
My opinion is stay off meds and you will suffer the concequences eventually. I came off meds completely had a major flare in 08 life has been hell this past year really don't want to ever go through this again. good luck in whatever you decide to do Bev x wink
Diagnosed with crohns at 13 now 43
Reversal of temp ileostomy finally have a date 7th April 2010
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 60mg (for Anxiety.)


" I may not be there yet, but I'm closer than I was yesterday."


haulmark7
New Member


Date Joined Mar 2010
Total Posts : 11
   Posted 3/21/2010 10:16 AM (GMT -7)   
Is it possible to have felt no MAJOR excruciating cramping after only one dose of entocort?  Seems unrealistic I'd say...

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/21/2010 10:20 AM (GMT -7)   
Sometimes med work faster for some, so maybe you are a lucky one:) Lets hope so!

Newfoundsun, no problems with your post at all. It was the other post that had me offended. Thanks:)
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 3/21/2010 1:26 PM (GMT -7)   
It is possible. I just started cortisteroids on Monday and within the first day I felt so much better.

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 3/21/2010 2:33 PM (GMT -7)   
If your disease is active in the right are of the intestine, entocort will act with immediate effect. It is one of the few medications that breaks down lower in the small bowel and is more of a localized steroid than prednisone. The effect is especially fast if your disease is mild. Now I would like to respond to the Newfoundsun and her comments about being your own advocate. I am in total agreement that you have you have to be your strongest advocate but there comes a point when you are just putting your head in the sand avoiding the inevitable. I realize that you are thinking outside the box and I all for that.I actually took the time to read your blog that you have in your signature and know of the pain both physical and emotional that you have experienced. One thing I have also noticed through your blog is that your doctor told you that by going completely without medication is being naive and that you would be back for medication. There are a lot of things that I would much rather do because it is what I think in my own head would be easier but it all goes back to trusting your doctor. I have to be humble enough to understand that my doctor knows what he is talking about and wants to help me. If you do not have that same trust, you need to find a new G.I. I am completely fine with people adding supplements to their diet to help them eat healthier but supplements are not suppressing the disease and helping stop the damage. You are right that it is your body and you have the ultimate say what goes into it but you do not have the ultimate say over this disease if you are not taking care of the underlying problems. By not taking medication you are litterally bring a knife to a gunfight and mark my words when I say you will end up in a flare eventually with worse damage than if you had been on medication earlier. The earlier you start treating, the less likely you are going to have more severe problems down the road. It is common sense and the only reason that I say thing so passionately is because I have gone without medication and paid severly for it. I have been the dumb one that thought I knew more and I do not want one person on here to have to go through what I went though to learn the same lesson that I have. A smart man learns from his mistakes, a wise man learns from the mistakes of others.
As for the person criticizing the moderators, you need to seriously reconsider why you come here. These moderators take the time to help this board be a place where people can feel safe and where people of all ages can feel comfortable in what they read. I love the fact that no advertising is allowed and when those that try to pose as one of us to push their new diet, book, or product are quickly kicked off and the sanctity of the group is kept. They are neither paid or benefited in any way by being a moderator but they still take the many hours to keep this place clean. They have never claimed to be a doctor and have advocated to following the medical advice of doctors. This begs me to ask you the question of why you would leave such a demeaning comment? I think all of us welcome you here and if you are upset you should start a post as this is a place to help release you emotions.

haulmark7
New Member


Date Joined Mar 2010
Total Posts : 11
   Posted 3/21/2010 3:23 PM (GMT -7)   
I am truly grateful to have found a place where I can share my concerns and receive support.  Thanks again...

lilcrohnieUK
Regular Member


Date Joined Dec 2007
Total Posts : 414
   Posted 3/21/2010 3:43 PM (GMT -7)   
I have long periods of remission but when I'm ill my Crohn's is severe. Even though I feel fine for years at a time I continue to take my methotrexate, if I stopped I know I run a strong risk of flaring and that could land me in serious trouble if my meds for what ever reason didn't work for me again and that each time I flare the damage inside could get worse. There have been two deaths in my family from perforated ulcers in the Gi tract (neither had Crohn's) but it just goes to show an illness of this sort no matter how mild should be taken very seriously or there can be very serious consequences. My GI doc is a strong believer in "prevention is better than cure" its better to stay well and take meds than to risk a flare and have a battle on your hands back to wellness. Just an opinion but please make sure you've really thought it through before you make any decisions.
 
 


wednesday77
Regular Member


Date Joined Oct 2007
Total Posts : 390
   Posted 3/21/2010 4:46 PM (GMT -7)   
Do not stop taking your medicine.  You can certainly decide to wean off them if you choose but abruptly stopping any medicine with no plan is not advisable.  I am hoping to at some point stop taking the medicine I am on to choose a more herbal/supplemental route but that will take a long time for me to see what works/if anything else can control this. 
 
I would recommend working with your GI dr and a natureopathic dr to see what works for you.  Changing my diet helped a lot for me to control my symptoms.  Sometimes any abrupt change can send my body into a flare though so whatever you decide to do, do it slowly.  Everyone is different and responds differently though.
 
Good luck!
33 yr old Female
Crohn's Colitis
DX 12/06
 
Currently on Remicade, starting Humira, 55 mg Prednisone, Multivitamin, Calcium, Probiotics, Vitamin D, a few other herbal supplements my natureopath has me on.
 
Eating a Macrobiotic diet, no meat or dairy, trying to cut way back on sugar and white foods.  Trying to focus on a more holistic approach to healing. 
 
 
 


newfoundsun
Regular Member


Date Joined Nov 2009
Total Posts : 145
   Posted 3/21/2010 6:55 PM (GMT -7)   
I agree that you need to be able to trust your doctor.  I did not trust my initial GI because of his inital decisions that I followed blindly, which led to more trouble.  I wish I would have stopped at that point to ask a second opinion, at the least.  I currently trust the Naturopath I am seeing.  Why?  Because he is one of the best in the large metropolitan area I live in, teaches at one of only 4 accredited naturopath schools in the nation, and he himself has Crohn's.  I looked hard at even what he was suggesting, before agreeing to give it a shot.  I hear what the veteran members are saying, and I totally respect your experiences and opinions.  Thank you for all of the input. 
 
Oh, and my first GI that diagnosed me?  He has since asked me who my Naturopath is and has set up a meeting with him.  He is now intersted in alternative/natural/complimentary medicine to add to his traditional western meds that he gives.  There's hope yet!!!
 
turn 
newfoundsun
 
http://www.newfoundsun.wordpress.com/  (my blog about this journey I have just started)
 
CD diagnosed 11/12/09
Being treated by a Naturopath who himself has Crohn's.


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 3/22/2010 1:02 AM (GMT -7)   
I always worry a bit for those who are going medication free with Crohn's. Crohn's can be a silent ticking time bomb inside of us. Damage can be quietly going on for years, and while the person thinks they are fine without medications, can just be heading for a nightmare. These boards are full of such stories, where they may even had a remission for several years, only to find that so much damage was done they needed emergency surgery. I know I went undiagnosed, and therefore untreated, for almost a decade. I finally got diagnosed when the inflammation ate a big hole in my TI. I'd rather take my meds, then ignore what could be festering in there.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Celexa.

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