25 yrs of Severe UC Gone for Now

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Burli
Veteran Member


Date Joined May 2003
Total Posts : 1251
   Posted 3/8/2009 1:14 PM (GMT -6)   
I am finally symptom free after 25 years with severe UC. The colonoscopy last week showed no active UC (just some scarring). Azathioprine saved my colon. VSL#4 was taken during that time but it alone did not seem to help. I now take 1800 mg Colozal (balsalazide) and 50 mg Imuran (azathioprine) daily and am now finally able to do all the things I wanted without urgency. In early 2006 I was certain my colon would be removed. I was hospitalized and got better over time. During that time my normal doctor was on vacation so another doctor tried Imuran. I was afraid of it. I believe he started me at 100 mg/day (can't remember). I gradually got better and am so glad to be on it. Wounds heal slow though so I'm still concerned about being on it long term.
 
I stated here before that I believe most supplement and diet cures are a waste of time for those with moderate to severe UC. You name it and I tried it. The specific carbo diet is one of the worst because after reading the book you believe you've finally found the answer and that doctors are ignorant. Bee propolus, Molocure, aloe vera, flax seed oil, fish oil, garlic enema's (wow, now that is a terrible experience you should not try), Sheldon diet "cure", etc did not help me with anything but draining my wallet, wasting my time and/or, sometimes, hurting me. I wish they did work. All data is anecdotal as to whether any helps UC.
 
I will say that my sister swears by VSL#4. Her UC seemed different than mine though. She gets constipation while I always got bleeding and diarrhea with the cramping and urgency. Data on it is also in the anecdotal range, not statistically significant.
 
I'm not saying that Imuran will benefit you but if you're not getting anywhere with your current doctor then maybe you should try another qualified one. Do this before you consider surgery.
 
Now that I'm better I'm vulnerable to taper my meds and go homeopathic if another "cure" comes along but believe I've learned my lesson. The one thing though I haven't tried is taking VSL#4 while in remission and tapering my meds. smilewinkgrin
 
For I will now just stick with the current plan.

 


quincy
Elite Member


Date Joined May 2003
Total Posts : 31005
   Posted 3/8/2009 6:25 PM (GMT -6)   
Hi Burli....nice to see you back with an update as to how you're doing.

It's awesome that the Aza and Colazal is working so well for you...hope it keeps up and you'll have a very long reprieve.

Interesting about your sister's UC and yours...good lesson to learn regarding the differences in how we react and how our own patterns of the disease doesn't necessarily ring true for others.

I really wish others would be able to use the 5ASA meds as I have for so long....I've had a few ups and downs over the past few months...even with a touch of bleeding which has truly surprised me. But, they still work quickly.....I'm hoping for another 20..lol!!

It's nice to see you on the boards again and sharing your experiences with what you've tried and what has brought you back from the ashes, so to say.

Punt...trying to figure out exactly the meaning as you stated it in a previous posting (bet on?)...if you don't mind sharing the intent..please expand.

Be well,
quincy
*Heather* Status..Asacol  (3 x2 daily); flaring /Dec 22, tapered to every 3rd nite
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 3/8/2009 9:03 PM (GMT -6)   
Burli said...
I am finally symptom free after 25 years with severe UC.


I stated here before that I believe most supplement and diet cures are a waste of time for those with moderate to severe UC.



I'm glad you are finally doing better.

I think whether or not fecal transplantation, Probiotics, and diet help or not is dependent more on why one has Colitis than on how severe the Colitis is. It is true that the fecal transplantation may not take hold when one is flaring badly, but it can be done during periods in which the flare is not as severe. My second flare was really severe. Yet, I too am in remission, and it is fecal transplantation, Probiotics, and diet that have put me into remission.

I have not drained my wallet, wasted my time, nor done anything that has hurt my body (except for when I was on Prednisone, Colazal, and Asacol). Imuran has some very serious side effects that are much worse than getting the colon taken out. What are you going to do if it stops working or you start getting side effects?
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics and Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: pro-inflammatory foods, HFCS, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)

Post Edited (subdued) : 3/8/2009 8:53:36 PM (GMT-6)


Burli
Veteran Member


Date Joined May 2003
Total Posts : 1251
   Posted 3/22/2009 11:03 AM (GMT -6)   
Quincy: Thank you for your reply. "Punt" means give up what you're currently doing before it gets worse (try something else). It comes from American football: If it's 4th down and long you can try again for a 1st down or punt the ball to the other team.

subdued: I understand Imuran may stop working for me and will be very sad if it does. For now I am on a low dose and get blood taken regularly to assure I'm healthy. I even noticed the drug prevents me from getting pollen allergies.
I like to frequently get on here and warn folks not to get too sold on "snake oils" because there is just no scientific evidence of them stopping a UC flare. In fact, they can be harmful. I always feared the side effects of the presciptions I took which is why I tried so many "natural" methods. People will still try what I say didn't work for me but I feel the need to provide my experience. Otherwise, someone newly diagnosed with UC might believe they should ignor their doctor's advice and just change their diet. I'm here to say don't do it.

peace-out
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 3/22/2009 1:23 PM (GMT -6)   
     Burli...I agree with you 110%.  All those miracle cures are a bunch of hooey.  I was hospitalized for ten days last year and believe me...I thought they were going to carry me out in a pine box.  I'm on 6MP too.  My white count is sort of low but the doctor is keeping an eye on it.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


_Bryan_
Regular Member


Date Joined Jun 2007
Total Posts : 77
   Posted 3/22/2009 9:35 PM (GMT -6)   
Burli said...
I stated here before that I believe most supplement and diet cures are a waste of time for those with moderate to severe UC. You name it and I tried it. ...Molocure...


Firstly, congratulations on hitting remission after a long 25 years (!). I can't imagine what that's like.

But I'd like to inquire more about your Molocure experience. How long did you try it? Did you follow the diet and immodium protocols? For the past year and a half, I've been in remission and haven't taken 1 ounce of prescription meds. I'm on a maintenance dosage of 3 AMP Floracel/day, and I'm free to eat whatever I want now. I've only had 2 colonoscopies, and my last one was about 3 years ago (or has it been 4 already? I can't remember.) It followed almost exactly a year after my first colonoscopy. And the difference in my colon between the two is the difference between a fully inflammed, chronic case of UC, and a healed colon.

I was on a diet, I ran, I took multivitamins, lecithin, Colazal, and Canasa, in addition to my AMP during my recovery. And while I stayed on all supplements when I could, I tried a month at a time of just Colazal, just AMP, and just dieting. And AMP was certainly the reason for my reversal in my experiments, and my 1.5 year long remission has confirmed this to me.

Now, it took me awhile to get there. I read the testimonials that seemed to suggest that they could hit remission in a couple months. I wasn't so fortunate. Because my entire colon was inflammed, it took me ~18 months of active treatment over the course of 2 years. It wasn't easy, nor was it cheap. But I know it definitely works, at least in my case. So I'm curious to hear your experience with Molocure (which is now Floracel, the brand I use).

If anyone else has stories, I'd like to hear them too. Let me know how well you followed the procedure, and how long you tried it, with what consistency, etc.

As an aside, I also noted that long periods on your feet are great to thwart UC symptoms. I think it's the constant churning of the legs and stomach that help to absorb the foods, or whatever it does. But if you can, give it a shot. My specific experiences were 10+ hrs/day on my feet for a 3 day weekend, and 4+ hrs of playing roller hockey. I noticed unusually well formed stools, and in the case of that weekend, it was as if I never had colitis. There were no negative symptoms. And that was my first summer after being diagnosed, when I was still in the thick of it. Prolonged walking, it really does something for me.
Male, 24.
dx'd: Dec. '04, though the onset was probably around '02/'03

Treatments included: Prednisone, Colazol, AMP (Molocure -> Digestinol/Floracel), Diet, exercise. Currently in remission. Only taking maintenance dosage of Floracel.

Condition: At worst, when I was diagnosed, I had gone 8 times a day, two or three days straight. Since then, I've got it down to about once or twice a day. For a brief time, I had hit "pre" remission, and ruined it with a bad diet. I'm currently at ~1 BM/day at ~95% normalcy. Canasa is my drug of choice. AMP is my health suppliment of choice. AMP> all others.

www.myspace.com/canaanabolaanan
Hailey's Letter


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/22/2009 9:47 PM (GMT -6)   

Thank you - looks like hope for me with 6MP.  Should know in a while - tapering next week on prednisone and upping 6MP if all goes well....

Just a note that I would never try any of the "different" treatments here without running them by my doctor for sure.  After all he is the one who went to medical school.  I don't even pretend to know what to try.  I have made it very clear about how I feel - I tell him everything, etc.  He tells me the side effects, long term possibilities, etc.  My NP has hehlped me with the nutrition and diet part as I also have GERD, hiatel hernia and IBS.

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008  Cannot tolerate mesalamines, Canasa, etc. Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred.
Started on prednisone Feb.7, 2009 - tapering to 20 mg. for two more weeks and then down to 15 mg.etc.  Added 6-MP Feb. 28.
Added Anusol suppositories - March 16 - see doc in 3 months. 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/22/2009 9:58 PM (GMT -6)   
Hey Burli, very long time no see, so glad you've reached full remission, hope it lasts forever!!

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/23/2009 10:39 AM (GMT -6)   
Burli, my experience echoes yours, although for a shorter duration. I also tried lots of alternative treatments to no avail, and was still going 20-25 times a day even on steroids. I wasn't lucky enough to be helped by Azathioprine, but Remicade put me right into remission.

I'm glad to hear you're finally in full remission, and I hope it lasts at least 25 years!
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.

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