Success stories

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Scorpion24
Regular Member


Date Joined Mar 2009
Total Posts : 63
   Posted 4/4/2009 1:36 PM (GMT -6)   
I am quite interested in success stories from people with UC, do you know anyone who has gone decades without any problems or do you have your own little success story?

it feels as though there is no way to overcome this disease at this point so it would really be helpful to know about others with my condition... I love to work on my martial arts and weight train but I must wait until I am in remission to return full on to the gym and my jiu jitsu! In the mean time I am finishing my personal training upgrade so that I can get a better job overall in the fitness field but in all honesty it feels as though things wont get any better anytime soon...

Shadam
Regular Member


Date Joined Jan 2009
Total Posts : 307
   Posted 4/4/2009 1:47 PM (GMT -6)   

I dont have any real success stories just yet as I was just diagnosed back in Nov of '08.  Im trying to find what works for me and what doesnt, I'm trying a lot of different types of natural and medical type treatments. 

I think the biggest success story for me though, is that I've realized to appreciate life and the times that you get to enjoy doing the things you love most with no UC interuptions.  I look at people who dont have our illness and almost envy them becuase they have so much opportunity to do what they want.

There will be a cure!


Age: 25 / Male / Florida
Diagnosed: 11/08 / Pancolitis
Asacol - 2 x 3 day (waiting for results)
Prednisone / ended 1/09 (started at 30mgs and tapered down)
Mens Multi Vitamin - 1 a day
Metamucil Wafers - Once a day
Jaro - Dophilus Probiotic (3.4 Billion) - 1 a day
Diagnosed with PSC: 3/9 --now taking Urso


AnnaG
Regular Member


Date Joined Apr 2008
Total Posts : 191
   Posted 4/4/2009 2:06 PM (GMT -6)   
I have UC and have still not managed to get it under control,however my partner knows an old guy at work he must be in his seventies,he is very fit and active,hence still working part-time,he told my partner he was diagnosed with UCin his early twenties and spent the best part of 3 years confined to the house,as he was literally pouring blood,and diahrea he could not be more than ten feet from the loo during this time I'm not I'm not sure what meds he had but I think everything that was avialable at the time,then he sort of lost faith with the medical proffession
as no meds they gave him helped,so he stopped seeing the doctors and treated himself over a period of years,with diet and other stuff,he says he has not had any symptoms now for over thirty years,and has not been near a doc for anything so much as a headache,yet he claims eating stuff like strawberrys, bread,cream would set it off within hours well he has found what works for him but this just shows me how individual it all seems to be.

Malkavian
Veteran Member


Date Joined Mar 2009
Total Posts : 1439
   Posted 4/4/2009 4:31 PM (GMT -6)   
I'm lucky, mine seems to be under control now. It got better pretty much as soon as I started my meds. I seem to have a fairly mild case, though, judging from what a lot of other people go through.

However, I'm currently getting screwed by bills, my dad's insurance has gone down the crapper.
21, female, diagnosed 3/6/2009
Mild ulcerative colitis from rectum to mid transverse colon
Currently in remission
Currently taking Asacol (3x/day) and Calcium/D supplements


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 4/4/2009 5:22 PM (GMT -6)   

You probably won't hear as many success stories as you should because (unfortunately, IMHO) folks that are doing well and have learned to manage their IBD don't hang out on the forums much... they're out living life.

In my experience, it's a long, hard road to get to the point where your IBD is under control and you know how to manage it and keep your digestive system healthy, but it can be done. It takes a LOT of research, experimentation and commitment. You have to be willing to give up unhealthy foods and activities.

I was extremely ill for the first couple of years after my diagnosis and my docs didn't give me much hope. When I asked what things I could change in my diet and lifestyle to support healing, I was told I was "in denial" and would never be well again. I quickly learned I would have to be responsible for my own body and my healing process.

I read everything I could get my hands on about IBD, the immune system and digestive health. I tried alot of different things - supplements and dietary changes - and kept a journal of meds, supplements, what I was eating and what my current symptoms were. I gradually began to feel better and better and I believe I've found the combination of things that work for me personally. I have some minor flareups, but these are usually caused by getting too lax with my diet, so it continues to be a learning process. The good news is I'm healthier now and in better shape than I was in my teens and 20s. I'm active and I travel and I do what I want to do without worrying about where the bathrooms are.

So hang in there. You can heal, rebalance the gut ecology, eat healthier and get back to all those things you want to do.


Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.
 
 


Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 4/4/2009 5:31 PM (GMT -6)   
Well, I'm a success story. I just live on my computer because my husband is quite busy with College and work to manage the benefits because of my health. My major flare hit in Feb of 2007. I was in the hospital for 25 days, put on Remicade, and that gave me the ability to get out of the hospital. I ended up having a severe reaction to the Remicade which made me switch to Humira. By July of that same year I was mostly in remission. Went back to work in July, and I still had minor symptoms until September. From September til now, I've been in remission. I had a very minor flare in May of 2008, but that went away in about a month. I didn't have to miss any work with that flare either.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


Sherman Tank
Regular Member


Date Joined Jan 2008
Total Posts : 34
   Posted 4/4/2009 5:41 PM (GMT -6)   
Have to agree. Noone who's been diagnosed as having uC les than a year or even two ago counts as a sucess story. Some poeple get more of a temp. UC.
Oersonally I've learned that the UC is like my body's way of telling me to slow down and treat myself better. I'm not happy I have it but at the same time it's like a gift. My body reacts extremely when I eat crap and live to hard or get too stressed. Its all life choices.
Diagnosed proctosigmoiditis/ UC 2004
Misdiagnosed with just Hemeroids since I was 12!!
Bad flare after birth of first son in 2004,
another bad flare pregnant with 2nd baby summer 2006
recent reallly bad flare Dec 2007- 1st time w/ prednisone
Asacol for last 4 years 3pills 2X's, ROWASA as needed up to 3X's a day,
now just Asacol 3 pills-2X's a day, probiotics 2X's, fish oil, diet
Tryed-acupuncture, herbal remedies


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/4/2009 5:58 PM (GMT -6)   
I have been in remission for three years and live completely normally. My last scope showed no inflammation and no sign of UC. It isn't gone, I know, but this is as close to cured as you get without surgery.
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.


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 4/4/2009 6:13 PM (GMT -6)   
     Judy just punctuated what a GI surgeon related to me last summer while I was still flaring.  Sometimes UC just goes away.  There is no explanation as to why it happens, but for some people it does.
     I've been in remission since last November.  I am on maintenance drugs, Colazal and 6MP.  Going off them for a month last year set me back.  I suffered a severe flare and had to be hospitalized for ten days.  Needless to say I have learned my lesson.  I really hope my UC goes away, but since I have had it since 98 and do have recurring flares, even when I do take my meds, I think that is just wishful thinking.  In the meantime, I am enjoying remission and thanking GOD for every day I feel well.
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.


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/4/2009 6:24 PM (GMT -6)   
Christine, even without treatment most people who have UC will have periods of flare and remission. Treatment hopefully makes the flares shorter and less severe or gets rid of them.

I was one of the poor chumps who never had a remission. I went through Asacol, Pentasa, Colazal, Rowasa, steroid enemas, Prednisone, Entocort and Azathioprine. Finally Remicade got me well. It's a different story for each of us.
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.


Shelliesv
Regular Member


Date Joined Apr 2009
Total Posts : 208
   Posted 4/5/2009 12:13 AM (GMT -6)   
I was in remission for 4 years and I completely attribute that to staying on the 9 colazol pills a day. I stupidly stopped taking them 6 months ago because they were causing hair loss and now I'm having a major flare. I do believe I would not have had a flare if I had continued religiously taking the colazol.

chezzyman
Regular Member


Date Joined Sep 2008
Total Posts : 45
   Posted 4/5/2009 2:01 AM (GMT -6)   
Its's not a succes story yet, but what helps me a lot is that my brother has UC also and he is now in remission maybe for three years without any pills and he eats the worst food in the world(fried everything).
UC (Proctosigmoiditis) april 2008
Prednisone 25mg
Asacol 3x3
Asacol enema every second night
colon dophilus probiotics
 
-
flare up


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 4/5/2009 5:33 AM (GMT -6)   
princesa said...
You probably won't hear as many success stories as you should because (unfortunately, IMHO) folks that are doing well and have learned to manage their IBD don't hang out on the forums much... they're out living life.


You are right about that. Most folks leave the forums and get on with their lives soon after they have their IBD under control.

I wish people would search the board for topics before creating new ones. Everyone would be able to get more input, including input from those who are no longer on the board, if they did.

I have three success stories:

1) My first flare wasn't severe. It went into remission on its own without the use of meds.

2) Prednisone reduced my second flare. Fecal transplantation put it into remission.

3) Probiotics and diet put my third flare into remission.
Joy - 47 yrs and counting
Colitis Dec 06 (also have IBS)
Currently in remission
Don't expect your doctor to cure your health problems. Your health is your responsibility.

Lexapro (for stress), Probiotics and Vitamins (a whole bunch of them)
Avoid HFCS, foods high in fructose, artificial sweeteners
When flaring: eat anti-inflammatory foods, avoid pro-inflammatory foods
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


nadalutti70
New Member


Date Joined Apr 2009
Total Posts : 6
   Posted 4/5/2009 5:54 AM (GMT -6)   

I was diagnosed with UC here in the UK back in 1998. To be honest I have trialled and been through all of the avaliable drugs that in m opinion do not seem to work. I live in Edinburgh and my local hospital luckily has some of the best resources in Europe for gastro diseases and most notably Crohn's and Ulcerative Colitis. I moved here in 2003.

I must admit compared to my first flare ups years ago where commuting the 8 miles to work day in the car was a complete ordeal toilet roll and baby wipes at the ready with spare underwear and trousers too, I am in better shape not physically, as UC is very draining and tiredness kicks in quite a lot. I do manage to have a successful career with good and bad days. We all know about the mental map of public toilets whereever we are travelling. My huge problem is taking my 2 young daughters to the park with no toilet facilities always puts the fear of God into me.

I have been on all the ASA 5 drugs, prednisolone (which in my opinion is just evil!) which have all failed. The last immuno suppresants is I was on - Prednisolone and Azathioprine carry so many side effects it is frightening. I have been off these for 6 months and do not feel any worse. I re3cently began taking LDN (low Dosage Naltraxone) which works in the complete opposite way to all other drugsa associated with Crohn's and Colitis. My consultant has been very supportive but cannot prescribe it for. The NHS (National Health Service) in the UK tend to go wuith what they know rather than try alternatives but my consultant is very open minded. He admitted that the current drugs used offer no cure and simply put the sufferer into remission for a while until the next flare up, so it makes the condition no better. The general view is that Crohn's and UC develops due to an overactive immune system (which can create more harmful bacteria) and the introduction of immuno-suppresants dampens the over-active immune system. However the number of colds flu and bugs I have picked up over the years leads me to believe that my immune system is actually very weak.

LDN works on the complete opposite, it is taken between 9pm and 3am each night. In every human we produce endorphins between 2am and 4am which boost and help maintain our immune system and fight infection and disease. LDN tricks the brain by sending a message that not enough endorphins have been produced and therefore a double dose of endorphins will be produced, boosting the weakened immune system shown in UC sufferers. Therefore the extra "friendly" bacteria produced fights infection and inflammation over a period of time. LDN has to be introduced gradually from 1.5mg up to a maximum 4.5mg although most males for some reason can tolerate less 3-3.5mg. This has to be taken religiously every night. I have been on this for 2 weeks and I'm on 2mg, I still get the odd cramp and a number of visits to the toilet - diarrhoea based stools but i have been told to perservere and up each week by 0.5mg to the maximum which can then take 4-5 weeks to get into your system and work properly. There are no reported side effects either unlike steroids and maintanence drugs currently used in UC and Crohn's. My theory is - what other choices do I have? I am willing to test this and if it does work then great.

I have actually been able to drive to Aberdeen from Edinburgh recently (3 hour drive) without stopping for the toilet - unheard of! Although admittedly I've experienced a couple of toilet stops since as the drug begins to work. If this can give me even 20% more mobility than I currently experience then this can only be a good thing.

I would highly interested to hear of any fellow sufferers taking LDN or contemplating taking it.

Lee.

 

 

 

 

 


Iflyfish
Regular Member


Date Joined Mar 2009
Total Posts : 45
   Posted 4/5/2009 8:36 AM (GMT -6)   
I have heard the same from my GI as Christine mentions; When I asked him about the statistics on this disease, he mentioned research shows a (small ) percentage of UC patients go into remission - never to get another flair-up again, a similar percentage receive no relief from any drugs and go to surgery for removal of the Colon - while the majority of UC patients ( like us..) try different therapies and drugs to maintain some kind of relief between flair-ups.

I was diagnosed in '98. And with Asacol and Immuron and watching my diet - I had at least a full year of 'hog-wild remission'.... I even put on a few pounds, could eat and drink whatever I wanted, even got confident enough to talk my GI doc into reducing my 100ml of Immuron to 50. Big mistake.
My 1 year reprieve ended....now I am on CIMZIA and have not had a 100% remission for some time.

My wife and I were invited on a nice boat that a friend has - for a Sunset cocktail cruise - I had to bail-out, as I just don't feel confident enough with a group in a confined area - even with 1 bathroom on board. Looking forward to a normal life again - to answer the original question posed by SCORPION, I know no UC patients who have gone DECADES without a flair-up, but if so would assume they are more part of the small percentage that for reasons unknown go non-symtomatic.

__________________________________
CIMZIA, IMMURON, ASACOL,
watching diet, strictly no alcohol, lots of Probiotics (5-lac)
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