Anyone feel better when not taking any medication...

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Hello_Kitty09
New Member


Date Joined Jul 2009
Total Posts : 3
   Posted 7/30/2009 6:14 PM (GMT -6)   
I went to my specialist today and he told me not to take anymore medication for the time being.  I have moderate UC.  I have taken Apriso, Pentasa, and Cortenema and they made me sick.  I told my doctor I actually felt better when I was not on any medication compared to taking medication.

blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 7/30/2009 7:05 PM (GMT -6)   
I didn't feel myself when I was on prednisone last time.  Feel flighty and paranoid.  These aren't substances that are innate to the body, and the reason they cause all sorts of problems.  I feel better now, and am on my way to remission. 
Pharmacist as of 6/12/2009.
Diagnosed 8/99. Suffered for almost 10 years. I am currently on the Specific Carbohydrate Diet and am nearing remission. I feel fantastic! I have lossed so many years to this disease.

MED-FREE!!!

Doc wanted to put me on 6-mp or Remicade, but I refused to take the medications! Currently on the Specific Carbohydrate Diet.  I'm in remission and life is like it always should have been.


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 7/30/2009 7:26 PM (GMT -6)   
I never felt worse in my life than when I was taking pred or anything with mesalamine. I'm not taking any Rx meds at this time and feel good.
32 yr old female
Mild Pancolitis
UC since 2000 - in remission for most of those 8 years med free.
Cannot tolerate mesalamine. Currently take probiotics and fish oil. Trying Applied Kinesiology & supplements.


TripleKiss
Regular Member


Date Joined Jul 2009
Total Posts : 21
   Posted 7/30/2009 7:38 PM (GMT -6)   
I would love to stop all meds (except maybe the occassional canasa which does wonders for me!).  I am paranoid to do that though because the first doctor I saw told me "you can never stop taking this medicine or you will only get worse".  I still hear him say that everytime I think I should quit meds...  (I switched docs, BTW!)
DX: UC (Proctitis) January 2009 (age 24)
Status: Currently in flare since Aug 2008 without remission
Medications: Align (probiotic), Cortisone Enema, Lialda, Prednisone (tapering), Flagyl, Cipro, Canasa, anticipating Dipentum after round of Prednisone,
Testing the spinach & sunflower diet (so far so good!), and researching coconut oil 
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 7/30/2009 8:22 PM (GMT -6)   

That would be a big YES!  You will find a post here about my specialist taking me off everything today.  When I think back the main reason I went for a scope was bloody diarrhea.  Now no diarrhea (which I think stopped with Align) and he told me today on the phone that unless I have tons of blood and get anemic not to worry about the blood in my stool. 

I have taken so much over the last year or more - mesalamines, steroids, etc. etc.  This doctor has 30 years experience and told me to try it without anything - just over the counter Imodium when traveling, etc. - pepto for nausea and Tylenol for pain.  That is what I was doing before - much better than side effects for sure.

Elaine NY


 
Senior - diagnosed with proctosigmoiditis - 6/2008   
Cannot tolerate mesalamines.  New specialist (June) - Cortifoam and Anusol three times a day for now.  Hope it works! (finding it impossible to do three times a day however)
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30995
   Posted 7/31/2009 3:53 AM (GMT -6)   
If the meds make you sicker...you shouldn't be using then unless by some chance you're actually improving. It's definitely touch-and-go for many UCers.
 
I will say with 100% conviction that if the meds made me sicker, I wouldn't be able to take them...but hopefully that would be after some dosage adjustment trials.  Some doctors put patients on high dosage of meds immediately rather than increasing a dosage to a limit that works and is tolerable.  Sometimes it's impossible to find that limit if one starts at the top.
 
q


*Heather* Status: flaring...Asacol 3 twice daily; Salofalk enemas nightly
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 7/31/2009 9:40 AM (GMT -6)   

quincy is so right.  I tell my doctors - all of them - think of me as a little kids - start me on kids dose because of my sensitivity to so many.  Dr. MacDermott agreed that I am probably very sensitive (even allergic to an extent) to what they put in the medications - not the drugs themselves - in a lot of cases.

I always feet I give medications my best try - usually end up quite sick before I stop them or cut back.  I feel that Colazal was helping the UC but the side effects were impossible to live with. Unfortunately, the only thing that works and I can tolerate is prednisone - darn!

ElaineNY


 
Senior - diagnosed with proctosigmoiditis - 6/2008   
No prescriptions as of yesterday!  Hoping for best and possibly adding other supplements.
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


Malkavian
Veteran Member


Date Joined Mar 2009
Total Posts : 1439
   Posted 7/31/2009 10:43 AM (GMT -6)   
I don't want to go off my 5-ASAs, I'm so worried about getting colon cancer when I'm older.
22, female, diagnosed 3/6/2009, symptoms for 2 years beforehand
Mild ulcerative colitis from rectum to mid transverse colon
Currently taking Asacol (1200 mg 3x/day), Rowasa and Calcium/D supplements


thatfield
Veteran Member


Date Joined Jul 2008
Total Posts : 823
   Posted 7/31/2009 1:31 PM (GMT -6)   
I think each person is different and should do what is best for his/her body. My condition is considered moderate but very stubborn so I am too worried to go completely off all medication however, I do try to take as limited amounts as my body needs...once or twice I have tried to completely stop the Lialda and I always start to flare...so I am not able to stop it at this time...
Dx 2006 right after the birth of my daughter
Lialda 3 pills a day!
Canasa daily
Probiotics Daily
 


Mercury28
Regular Member


Date Joined Jul 2009
Total Posts : 170
   Posted 7/31/2009 3:12 PM (GMT -6)   
I am not taking any meds for my colitis as nothing seems to agree with me. I am worried that by not taking meds i may get colon cancer, but i just can't put up with the side effects that the drugs give me.

I am trying diet change, and also alternate meds like aloe vera, and probiotics, and i start my first sessions of acupuncture and Kinesiology next week.

Sometimes i think my family would be better off without me, my whole life seems to be dominated by my darn health! My colitis seems to have flared since i came back to the Uk after being in Canada for 3 months. I feel so depressed that everyday is a struggle, everyday i feel ill and i also feel sad that all my friends are going out having a good time and i can't :o(
Ulcerative colitis for around 15 years (Im am 28 years old now)

15 years of untreated colitis

I am taking Asacol foam enemas 2 x a day

Calcium 3 x a day for osteoporosis

Actimint pre and probiotics 6 x a day

My biggest concern BOWEL CANCER :O(


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 8/1/2009 9:29 AM (GMT -6)   

Mercury28 - I sure can relate.  However, I enjoy living and will keep fighting to the end and I am 69.  But I understand about medication.  Finally, the specialist I went to who has 30 or more years experience with IBD told me to go off all medication - take Imodium and/or pepto bismal as needed and "see what happens".  Everything seems to help the UC some but makes me feel so sick.  I said this morning to my husband "if only I could feel as good when I get up as I do when I go to bed". Sick every morning for two or three hours - nausea, cramping, etc.  It gets very tiring.  BUT - your family and my family love us and needs us!!  Hang in there.

ElaineNY


 
Senior - diagnosed with proctosigmoiditis - 6/2008   
No prescriptions as of yesterday!  Hoping for best and possibly adding other supplements.
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


Hello_Kitty09
New Member


Date Joined Jul 2009
Total Posts : 3
   Posted 8/1/2009 10:53 AM (GMT -6)   
Mercury28, I know it is a struggle and UC is not fun, but there is no reason to give up!!!!  Your family loves you and I'm sure they understand that you are sick.  The side effects of the drugs are awful, I was unable to get out of bed and I was only on the meds for a few days.  My body has not reacted well to any medication and I am scared to think of what the meds have done to my body.  I lost 11 pounds in 2 1/2 weeks (I am 5'4 and a size 5 normally, so I do not have much room to loose weight).  On the other hand, I want to get better and I am frustrated that I have no reacted well to any medication.
27 year old diagnosed 6/2009, had symptoms for several years (possibly up to 6 years) before I was diagnosed.
Have mild - moderate UC, Gastritis, and history of Ulcers.
Medications- Cortenema, Apriso (4 pills a day), and Pentasa (started with 4 pills a day)  Had painful reactions to all medications listed.  Doctor now only has me on Prilosec for reflux and Mylanta or Kaeopectate as needed.  Suggested Preperation H and soaking before bedtime.
If I get worse next step will be Prednisone since I cannot tolerate other medications.


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 8/1/2009 7:26 PM (GMT -6)   
I don't take any colitis medicines and feel better both mentally and physically for it.

I take Lexapro for severe social anxieties and feel so much better mentally for it; however, the medicine does make me more tired.
Joy - 47 yrs and counting; Dx Colitis Dec 06 (also had IBS); Currently in remission

Figuring out how to reduce a flare or get into remission is a trial and error experience. Don't expect your GI to have all the answers. He was trained in making diagnoses, prescribing medications, and surgically removing the colon. He was not trained in alternative treatments. That's why they are called alternative treatments.

What works for me: Fecal transplantation, Probiotics, Anti-inflammatory foods, No HFCS, No foods high in fructose, No artificial sweeteners, No pro-inflammatory foods when flaring, Vitamins, Lexapro (for stress).


TramaDoll
Regular Member


Date Joined Mar 2009
Total Posts : 31
   Posted 8/2/2009 1:19 AM (GMT -6)   
Early in the year I went on vacation, four hours out of town. I only planned to be gone for a long weekend but I was given the opportunity to extend my trip. Making sure I had enough meds was the last thing on my mind during the excitement lol. I was off all meds for three weeks and my symptoms actually got better. I asked my GI about this and he said that he's not surprised. Apparently he scheduled that particular appointment to discuss changing my treatment plan. I know better than to just stop taking anything so I began taking it as prescribed once again. Though I did ask if I could experiment with how many I take daily. I realized the less I take, the less symptoms I have.

But that didn't last longer than two months. They all came back full force. Gah.
-Ruptured ovarian cyst           7/4/2003 hospitalized for 3 days
-ER Laparoscopy
Dx Endometriosis                   11/10/2003 hospitalized for 3 days
-Ulcerative Colitis Dx              10/2005
-Pleurisy Dx                          12/26/2007
-1st and only UC flare             Jan-Mar 2006
 
1.2gm Lialda 3 daily, 100mg Zoloft, 110mcg Fluticasone, Proventil, Vit. B12 complex, 400mcg Folic Acid, 400iu Vit. E, 1000mg Vit. C, 800iu Vit. A, 454gm Hydrocerin.


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 8/2/2009 2:58 PM (GMT -6)   
Mercury28 said...
I am not taking any meds for my colitis as nothing seems to agree with me. I am worried that by not taking meds i may get colon cancer, but i just can't put up with the side effects that the drugs give me.

I am trying diet change, and also alternate meds like aloe vera, and probiotics, and i start my first sessions of acupuncture and Kinesiology next week.

Sometimes i think my family would be better off without me, my whole life seems to be dominated by my darn health! My colitis seems to have flared since i came back to the Uk after being in Canada for 3 months. I feel so depressed that everyday is a struggle, everyday i feel ill and i also feel sad that all my friends are going out having a good time and i can't :o(


Hi Mercury28,

I think it's good that you are giving alternative treatments a try. However, it worries me that you say you think your family would be better off without you due to your darn health. Have you ever thought about surgery? I have heard people say they got their life back after having their colon removed, and you wouldn't have to worry about getting bowel cancer if you don't have a colon.
Joy - 47 yrs and counting; Dx Colitis Dec 06 (also had IBS); Currently in remission

Figuring out how to reduce a flare or get into remission is a trial and error experience. Don't expect your GI to have all the answers. He was trained in making diagnoses, prescribing medications, and surgically removing the colon. He was not trained in alternative treatments. That's why they are called alternative treatments.

What works for me: Fecal transplantation, Probiotics, Anti-inflammatory foods, No HFCS, No foods high in fructose, No artificial sweeteners, No pro-inflammatory foods when flaring, Vitamins, Lexapro (for stress).


MissMindy
Regular Member


Date Joined Nov 2007
Total Posts : 27
   Posted 8/3/2009 12:33 AM (GMT -6)   
I have actually been off meds for about 8 months now. I feel so much better and more myself. I have to be really careful about what I eat and some time have about 5BM in one day if I eat something I shouldn't. But physically and mentally I feel better without the medication. I don't recommend it do everyone tho. So be sure that you want to be off.

Mercury28
Regular Member


Date Joined Jul 2009
Total Posts : 170
   Posted 8/3/2009 12:38 AM (GMT -6)   
subdued said...
Mercury28 said...
I am not taking any meds for my colitis as nothing seems to agree with me. I am worried that by not taking meds i may get colon cancer, but i just can't put up with the side effects that the drugs give me.

I am trying diet change, and also alternate meds like aloe vera, and probiotics, and i start my first sessions of acupuncture and Kinesiology next week.

Sometimes i think my family would be better off without me, my whole life seems to be dominated by my darn health! My colitis seems to have flared since i came back to the Uk after being in Canada for 3 months. I feel so depressed that everyday is a struggle, everyday i feel ill and i also feel sad that all my friends are going out having a good time and i can't :o(


Hi Mercury28,

I think it's good that you are giving alternative treatments a try. However, it worries me that you say you think your family would be better off without you due to your darn health. Have you ever thought about surgery? I have heard people say they got their life back after having their colon removed, and you wouldn't have to worry about getting bowel cancer if you don't have a colon.


I have considered surgery and if these alternate treatments and diets don't work then that shall be my next step. Obviously I would like to hang on to my colon for ax long as possible but not if it's going to ruin my life. My new GI is horrible, he said without meds I am going to die! I mean there's nothing like messing with my head, so since then I have been a total anxious mess thinking what's the point in fighting this disease anymore. Saying that I am trying to get back to see my old GI, she was great and much more positive which kept me positive.
Ulcerative colitis for around 15 years (Im am 28 years old now)

15 years of untreated colitis

I am taking Asacol foam enemas 2 x a day

Calcium 3 x a day for osteoporosis

Actimint pre and probiotics 6 x a day

My biggest concern BOWEL CANCER :O(


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 8/3/2009 9:02 AM (GMT -6)   

GEEZ!  My new specialist who has 30 + years experience with UC and Crohns told me to go off the medications if they were making me sicker than UC.  He wants to see if I can control the symptoms I have for now.  I just might have to go back on prednisone but he considers that last resort.  I still have bleeding but other symptoms are better.  He told me to continue to have monthly blood tests and if I am not anemic or have any other blood issues not to worry so much about the blood I see.  That is hard to do!!

ElaineNY


 
Senior - diagnosed with proctosigmoiditis - 6/2008   
No prescriptions as of yesterday!  Hoping for best and possibly adding other supplements.
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16728
   Posted 8/3/2009 9:32 AM (GMT -6)   
I don't feel great but I can't say I am "worse" than I was when I was on no medications. I was running to the toilet every 10 minutes and anemic, I felt like I was going to die. I definitely feel better now even though I deal with fatigue and some other issues.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...

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