Getting off of Meds

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SunnyFL
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Date Joined Jul 2010
Total Posts : 11
   Posted 7/28/2010 8:18 AM (GMT -7)   
I want to get off Crohn's meds and my doctors are fighting me on this!!! I fill like I am lost on what to do! DO I just stop taken the meds?????

MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 7/28/2010 8:34 AM (GMT -7)   
Can I ask why you want to get off your meds? Do they make you sicker then your disease?
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


lamb61
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Date Joined Jan 2005
Total Posts : 1719
   Posted 7/28/2010 8:37 AM (GMT -7)   
Are you in remission? If so, you still need to be on maintenance meds -- I know from personal experience.
 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/28/2010 8:39 AM (GMT -7)   
My personal opinion is I agree with your doctor. I too once decided I did not need meds and it ended up in pretty ugly manner. I ended up having to have emergency surgery because I completely obstructed. Even though you may be feeling well, the disease is still in there doing its damage on a microscopic level without you even knowing it. The maintenance meds keeps the inflammation down and helps to prevent the disease from progressing. Please stay on your meds.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease 
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"*

SunnyFL
New Member


Date Joined Jul 2010
Total Posts : 11
   Posted 7/28/2010 9:02 AM (GMT -7)   
I feel the same as I did when before I started the meds. Then a few weeks ago I ended up in the hospital with a heart attack I am only 37 and I don't want to keep taken meds for crohn's if it is not changeing anything.I only had pain one time. I think that it is adding more problem to my health. I know what foods make my crohn's act up and I know I will always have this but My Heart is telling me something in not right with takeing so much meds everyday.

Thanks,
SunnyFl

almost30inMI
Regular Member


Date Joined Jul 2009
Total Posts : 61
   Posted 7/28/2010 9:10 AM (GMT -7)   
Hey Sunny. What meds are you taking? I would agree with Nanners and others. Please don't stop taking your meds. I stopped or took them irregularly while in college because I was feeling pretty good. When I went back to the doc, I had gone from mild to moderate/severe crohn's. I didn't feel bad at all and the entire time my guts were being attacked. Just because you feel good doesn't mean the disease has stopped progressing. Now I am on stronger meds and feeling good at the moment. I just wonder where I would be today if I had stayed on maintenance meds....
Diagnosed with Crohns in 1998. Been on and off pred, entocort, immuran, asacol. Currently on Remicade every 6 weeks along with Asacol. Began having joint pain 01/2010.


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 7/28/2010 9:14 AM (GMT -7)   
Sunny,
You know there are several different crohns meds. Do you mind if I ask what meds you are on? What severity does your doctor consider your disease to be? Meaning what shows up on scopes? How many times a day do you poop/vomit? Do you think the heart issues are related to your disease or your medication for your disease? How is your quality of life?

I am sorry if these questions seem intrusive, but I am trying to get a grasp on the status of your health is right now. I went from having no heart issues to having some (not nearly the problem you had), due to the inflammation and blood loss from crohns disease. So I am wondering if there are multipule issues are not contributing to each other and the main goal is to get the level of inflammation down in your body.
Take Care,
Navy
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


SunnyFL
New Member


Date Joined Jul 2010
Total Posts : 11
   Posted 7/28/2010 9:25 AM (GMT -7)   
Thanks everyone for all the help!!!
I an takeing entocort 9 mg( 3 - 3 mg)and asacol 2400 mg(3-800mg).
Mod/serve crohns bathroom normal is 15-20 a day so no change on the meds!!

Thanks,
SunnyFl

MaryS
Veteran Member


Date Joined Jan 2003
Total Posts : 1668
   Posted 7/28/2010 9:34 AM (GMT -7)   
Sometimes it is a terrible Catch 22. My Daughter back in the early days tried going without her meds because she felt worse on them and ended up feeling even more worse. Then when she finally got on meds that worked (Remicade and Imuran) it ended causing other health issues in her life. She is frustrated, her GYN treating her is frustrated, her PCP treating her is frustrated. Everyone is frustrated but her GI!!
Mum of an IBDer since 1999. Daughter diagnosed at age 17 with Crohns/Colitis. This disease s*cks!!


SunnyFL
New Member


Date Joined Jul 2010
Total Posts : 11
   Posted 7/28/2010 9:40 AM (GMT -7)   
Thanks! I am even changing all my doctors!
They love my good insureance! So sad but true!
Someday I hope this is fixed!!

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 7/28/2010 9:45 AM (GMT -7)   
Crohns meds can take about 3 months to reach a treatment level in the body. Some people are lucky in that it happens much faster for them, but it does not happen for everyone (like me!). Have you been taking those meds for very long? How long have you been dx? I have to say that I am suprised that they have you on endocourt with having heart problems. What does your cardiologist say about that?
Have you thought about trying different crohns meds?
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


SunnyFL
New Member


Date Joined Jul 2010
Total Posts : 11
   Posted 7/28/2010 9:51 AM (GMT -7)   
I didn't have the heart problem untill 9mo after taken the meds. I Have asked all my doctors about the meds and if it could effect my heart and they all keep going in circles with answers. I even went to my family doctor she said I can fix a broken bone but I can't help you with any of the crohn's stuff or heart stuff! So yes all new doctors will be takeing place soon! Just fed-up with no answer!!!!

grumpygi
Regular Member


Date Joined May 2010
Total Posts : 266
   Posted 7/28/2010 6:14 PM (GMT -7)   
Well, specialists are experts in only one narrow topic - almost to the exclusion of the rest of the body. Its somewhat like asking the plummer why the fuse box keeps cuttin out. He might have an answer but probably not the best answer! So somehow you must find someone who can look at the whole of you - maybe a Mayo clinic or some other nationally recognized medical center. Do your homework, ask questions and read everything you can get your hands on. Be blessed! Barb
Meds: Celebrex, Omeprazole, Liadla, Entocort EC 9mg/day, Vit D, Mulitvit, Omega 3's, Ambian, Neurontin.
 
 
 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/28/2010 6:25 PM (GMT -7)   
And don't forget that pain, malnutrition and the general physical and emotional stress that comes with being ill can have a detrimental effect on other organs, including your heart.

In other words, it may be possible to attribute your heart attack to unmanaged Crohn's, rather than your medications.

Like the other members, I suggest having a deep discussion with your doctor about this, but I would definitely not stop your meds without consultation, collaboration and ongoing monitoring. In fact, I even wonder if you would benefit from being on a stronger Crohn's med, to get your symptoms under better control.

All the best,

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


SunnyFL
New Member


Date Joined Jul 2010
Total Posts : 11
   Posted 7/28/2010 6:43 PM (GMT -7)   
Thanks! I did get a call from my GI doctor today that have put a plan together to get me off the meds. So we start slowly lowering dose tomorrow! Will take at least 4 weeks to get off the entocort! So we will see how it goes! Thanks for everyones help!

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 7/28/2010 11:30 PM (GMT -7)   
I can understand them taking you off the entocort and asacol if they are no longer effective but you are going way too much to be off meds all together. You should be on some of the stronger crohn's meds like remicade or humira or atleast try some of the other lower level ones like pentasa or 6 mp to get you down below 10 bathroom trips a day. Entocort is not a long term med and it has major side effects like other steroids so I can see their reasoning for starting the taper process but I would demand better care with your maintenance meds.

SunnyFL
New Member


Date Joined Jul 2010
Total Posts : 11
   Posted 7/29/2010 6:17 AM (GMT -7)   
Well I hope that this works! I don't want to take any meds! I will hopefuly make it through fine! If not then I look at other meds but, for now I will deal with the bathroom trips if it means no more meds!!!!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/29/2010 6:28 AM (GMT -7)   
I have a feeling you will then be seeing a surgeon if you aren't going to take the meds. It sounds to me like you have just not found the correct med for "you". There have been so many people on this very forum who thought they could do it without medications, and its ended bad for every single one. Good luck, I really think your gonna need it. JMHO
Gail*Nanners* Co-Moderator for Crohns Disease 
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"*

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 7/29/2010 6:40 AM (GMT -7)   
The Entocort usually takes only a few weeks to work, so it might not have been working for you. It doesn't work for everybody, and there is no evidence it induces full remission. Entocort works best in patient whose disease is confined to the terminal ileum. 
 
The latest research shows 4.8 grams of Asacol are much more likely to be effective than the dose you are on.  Sometimes patients who do not respond to Asacol do better with a similar med called Pentasa - Pentasa targets mainly the entire small intestine, and Asacol targets mainly the colon and last part of the small intestine. These types of meds tend to cause fewer side effects, but are also less likely to be effective for Crohn's than for ulcerative colitis.
 
Has the doc considered upping the Asacol dose as s/he decreases the Entocort? Or switching you to Pentasa at the highest dose?
 
Our family hates having to resort to meds, but this disease is too dangerous to let ride without treatment. Your best chance of fighting it effectively with meds and/or diet is right now, before it gets worse. So far, considering the meds you have been on, you might have been undertreated.

Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past three years. March '09 colonoscopy showed stricture gone but two spots of inflammation in TI. Used LDN to taper off Entocort last fall. (Was on Entocort since April 06.) Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 2000IU vit D3, 1000 mg calcium, 27-54 mg iron, monthly B12 shots, daily oral B12 twice a day (one B complex, then later one B 500), 10mg zinc. SCD diet. 


SunnyFL
New Member


Date Joined Jul 2010
Total Posts : 11
   Posted 7/29/2010 6:58 AM (GMT -7)   
I think that every case is different I am still change doctors and will do what I need to do! But , I think that the meds are more of a problem then crohns it self! Having a heart attack. Kind of wakes up up about putting bad stuff in your body daily! I don't have any faith in my doctor and need to hopefuly find someone who will help with this! So we shalle see I guess but I control my life and I will keep doing that!
Thanks,
SunnyFl

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 7/29/2010 8:16 AM (GMT -7)   
In addition to the points raised by Ivy - the electrolyte and nutrient imbalances caused by diarrhea are hard on the heart (and the entire body).
 
I hope the taper goes well, that you feel better, and that you find a doc you trust! Be sure to keep us posted. 

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 7/29/2010 8:32 AM (GMT -7)   
My experience w/Asacol is exactly what NJmom describes. I had inflammation in the rectum and cecum, and Asacol did nothing for me. When I switched to Pentasa it was like a new day dawned and the diarrhea went away, felt much, much better, etc. I had suspected there was small bowel involvement, but since I never swallowed a pillcam, no one could say for sure. My improvement on the meds changed everything.

SunnyFL, please get on some meds that actually help resolve your symptoms. No one should be having 15-20 BMs a day. I'm sure that your nutritional status is compromised by this disease, not to mention just feeling yucky. You might not even realize how icky you feel now, until you find the right medicine that makes you feel better.

And I know how frustrating it is to have to take so many pills every day. I use a 4x7 pillbox and almost every chamber in that dang thing is full. Someone needs to make a pillbox especially for Crohn's patients. One container for our IBD meds, one for our vitamins, one for our supplements and one for the mood modulators that get most of us through the day!

{{{{{HUGS}}}}}}. My DH's best man had his heart attack at age 37 also, with no warning signs. He now has a defibrillator implanted, he's 45 and doing great. I hope you are feeling better soon.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 7/29/2010 8:43 AM (GMT -7)   
Sunny,
I think more then anything else we want you to find as good as health as you can get. I am not going to tell you what to do, because I think you know your own body best.
I personally think it is a great idea for you to switch doctors especially since they put you and keep you on a steriod when you have already had a heart attack. (I have to admit this is just INCREDIBLE to me that they would do this!)
 
We might be a little scared as a forum for you, because we also just lost a member earlier this month a 22 year old guy (Yes, 22!) who had such severe crohns that it gave him heart failure.  His member name was Kasper, you can still see the post about this on the first or second page of the forum. 
I have gone thru 7 gi's myself to find one that I am ok with. But I also understand the point about not being on meds, because they suck. But I also understand no meds can equal surgery eventually, and sometimes really bad emergency surgery.  
 
I saw study once that stated within ten years of being dx, 80% of crohns patients will have surgery. The goal of meds is to gain remission, and to hopeful be a bowel sparing as possible.  Because there is such a thing has having crohns so bad in areas that cannot be resected or resected to the point that there is just no more bowel left. (Randynogut's is hardcore rare, most people would have died in his situation.) Beyond the stories here, I do not know if there is research about unmedicated crohns and surgery.

There are still options availible to you, such as diet and suppliments that you can search for on here.  There are different meds I think it really a matter of finding a GI that you can trust and will work with you.
Take Care,
Navy


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 7/29/2010 10:20:11 AM (GMT-6)


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 7/29/2010 9:16 AM (GMT -7)   
Is anyone else just beyond shocked that the doctors kept her on a steriod after her heart attack?
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1719
   Posted 7/29/2010 9:46 AM (GMT -7)   
Actually yes, Navy I am. That would also be a reason for no Remi or Humira would it not? I know there are some warnings with Remi and heart issues aren't there?
 

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