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notcryingwolf
Regular Member


Date Joined Jul 2009
Total Posts : 21
   Posted 7/3/2009 7:30 PM (GMT -6)   
I was diagnosised with UC a year and a half ago.  I have had several episodes since then, and the only thing that seems to start to cure me is laxatives and going on liquid only diet for a couple of days (found this through multiple colonoscopy preps).  That means that something that I am eating... or not eating has to be causing this... right??  So, I have a couple of questions to throw out there...  What have other people found to have triggered their UC?  And what vitamins/supplements have you found help keep it under control? 
 
I seem to have found the way to get it into remission, but can't keep it there.  I have tried the SCD diet, but only for a month... symptoms worsened, so I quit.  I have tried Petpo Bismal.  I have tried tums/rolaids.  Any other suggestions?
 
And final question...  I am an athlete, always have been... is exersize ok while you are having an episode?  I have trouble sleeping without it!  But my Dr said wait till it is in remission... driving me crazy! 

Butterfly Kisses
Regular Member


Date Joined Aug 2008
Total Posts : 32
   Posted 7/3/2009 8:04 PM (GMT -6)   
Are you on any prescription meds for UC? The only reason the laxatives and liquid diet "cure" you is because you don't have anything inside you to come out or agitate the UC. It's not actually causing the inflammation and such to go away. You need to be on something to help the inflammation. When I am in a flare almost everything bothers me. I tend to eat more bland food while flaring and avoid hard to digest foods, anything spicy, citrus, dairy, caffeine, sugar...a lot. Exercise causes the stuff in your intestines to move which would actually cause you to go to the bathroom more often. They say it's good to exercise when you're constipated to help ease it out. That is probably why your doctor said to avoid it while flaring. As far as I know it doesn't cause inflammation or anything, it can actually relieve stress which could help you since stress exacerbates UC. I'm not your doctor but if it was me and exercising didn't make me feel worse I would still do it. But you might want to research it first or ask your doctor why he doesn't want you to be so active until remission. Maybe he has a good reason for it.
~Was diagnosed with Ulcerative Colitis in 2002.
 
Currently taking Colazal, Imuran and I am on Remicade.


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 7/3/2009 8:24 PM (GMT -6)   
It sounds to me like you aren't on any of the prescription meds commonly used to treat UC. Are you? If so, please let us know what you're using. I agree with Butterfly Kisses that the liquid diet + laxitives just completely empties you out.

As for natural things, I use probiotics, which I think help, but I know wouldn't keep my UC under control by themselves. Just about everyone on here takes a probiotic. There are also things like fish oil, glutamine, aloe juice, and some others I'm forgetting that others on here use.

However, do know that the only true cure for UC is surgical removal of the colon. The prescription meds can only keep it under control, but they don't cure it (in terms of being able to quit the meds and not have it come back).
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


Butterfly Kisses
Regular Member


Date Joined Aug 2008
Total Posts : 32
   Posted 7/3/2009 9:48 PM (GMT -6)   
Fruitgirl- My doctor has told me that surgery is not a cure since UC can come back in other areas. Am I mistaken? I know you'll definitely still go to the bathroom a lot so really it's not that much of a "cure" in my eyes.

notcryingwolf
Regular Member


Date Joined Jul 2009
Total Posts : 21
   Posted 7/3/2009 9:54 PM (GMT -6)   
No, I know cleaning out the system is a temp fix, but it is always the start of me getting better... it goes into remission for about 2 months.  And believe me... I am eating!!!  It is a quick 24 hours of the laxative and liquid only... then it starts healing.  I need to figure out what I am doing in the 2 months that brings it back! 
 
Also, I went on predisone and suppositories after the first flare up, then tried them again after the second.  I tried a high dose of predisone by itself... with absolutely no result, just a swollen face, out of control moods, and my hair falling out!  THen I went on Lialda.   That seems to help get it under control with a high dosage, but makes me get insane acne.  Also rather spendy.  My Dr just prescribed Balsalzide disodium.  Again, makes my face break out like crazy and doesn't seem to help much.  I really would like to not have to rely on meds to heal... I want to figure this out and change the life style... however drastic that might be.... to heal.

Butterfly Kisses
Regular Member


Date Joined Aug 2008
Total Posts : 32
   Posted 7/3/2009 10:46 PM (GMT -6)   
I don't know a ton about people who've had success not using any medication but I'm sure there are some people out there. However I'm sort of a skeptic that if it's that bad for you that you'll be able to do it just by changing your lifestyle. It's not the food that is causing you issues, that is just a possible cause of exacerbation of the issues you already have. Here is an excerpt from the mayoclinic.com site

Causes:

Immune system. Some scientists think a virus or bacterium may cause ulcerative colitis. The digestive tract becomes inflamed when your immune system tries to fight off the invading microorganism (pathogen). It's also possible that inflammation may stem from an autoimmune reaction in which your body mounts an immune response even though no pathogen is present.

It sucks that the medications have been causing you acne but you have to outweigh the acne against the symptoms of the UC...which is worse? How long have you been on the Balsalzide? Maybe after a while the acne side effect will go away. Good luck in whichever way you choose to go. I hope you find some relief soon!
[fuchsia]26 years old...Diagnosed with Ulcerative Colitis in 2002[/fuchsia]

Currently taking: Colazal 750mg 3 pills 3x a day, Imuran 50mg 3 pills 1x a day, Remicade & B12 Injections.

Have taken: Asacol, Lialda, Entocort, Prednisone, Limotil, Nulev, Librax, Canasa & Rowasa.


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 7/3/2009 11:32 PM (GMT -6)   
Butterfly Kisses, surgery is a cure, so long as the entire colon is removed...there's nowhere for the UC to come back. There is a small risk that what you always had was Crohn's. suebear (who posts frequently) has a j-pouch, and while she says she does poop a lot, it's not a big deal. It's basically just like urinating for her, because it's quick, not urgent, etc. She says she doesn't think at all about how many times a day she poops. For me, I don't care about frequency, so long as there is no urgency with it.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4201
   Posted 7/4/2009 11:12 AM (GMT -6)   
My doctors have told me exercise while flaring is okay as long as I can tolerate it. If you are losing weight though, it might be best to limit your cardio. I would ask your doctor why he said no to exercise.
25 years old; diagnosed March 2007;
Currently: persistent rectal inflammation
Asacol, 4 tabs, 3xday; Rowasa nightly; Viactiv; Metamucil wafers; multivitamin; Primadophilus Reuteri; sublingual allergy drops; Ortho Tri-Cyclen


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 7/4/2009 11:28 AM (GMT -6)   

Here's some surgery info:  wink

Surgery is the ONLY cure for UC.   rolleyes   The UC can come back in the 'colon' if the entire organ is not removed.  Some surgeons still only remove the diseased portion, but UC is specifically a colon disease, so the chances are very high that it may reoccur in a leftover area.  So, almost everyone who is at the point of surgery does have their entire colon removed no matter if they have pancolotis or not.

Crohn's Disease is a little different, as this effects the entire digestive tract  shakehead   so having the colon removed may seal the deal, or it may just give some relief for a short amount of time.  CD is also known as the cut away disease (or something like that) b/c many of the patients are desperate for relief and continue to cut away at their colon and small intestine in hopes they will be okay.  There is no cure for CD.  However, on the ostomy forum I have found tons of wonderful people with CD who are doing great with their ileos.  I've also met so many amazing people, young women such as myself, with ileo's and we LOVE THEM! 

UC is such a crazy disease in the aspect that each and every person is affected differently.  What works for you may not work for the next person, and so on.  I am so happy for those who find remission and are able to live an active healthy lifestyle with medications.  But...I am also very happy with my medicine free lifestyle.  I am a proud ostomate! yeah

smurf  


: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 7/4/2009 11:37 AM (GMT -6)   

Oh, and one more thing.

If surgery is the option, then one can opt for a permanent ileo (which I did) or you can go the j-pouch route.  I know many people are successful with both scenarios.  The secret to being happy afterward is to really make the best decision for 'you'.  I know it's a status quo thing to be as normal as possible, so that means going to the bathroom as normal as possible.  But you know?  I've been traumatized with the darned toilet and the pain I experienced, so why in the world would make having to go poo a priority?  That's just me.  I made the decision to never go poo again, and I have never regretted it.  In fact, once my super hectic schedule starts to slow down just a bit, I'm going to focus on my designer accessory covers.  smilewinkgrin    I call my appliance my accessory, and my stoma's name is Penelope.  I have tried very hard to individualize my situation and make it the best for me and my lifestyle.  There are plenty of accessory covers out there, but mine are going to be designer and just absolutely awesome!  I do have to give kudos and promote a site I've found called My Heart Is Tied.  A young woman made an amazingly beautiful piece to camaflouge one's accessory during intimate moments.  It's gorgeous!  I too am in the process of making covers that are personality focused and will hopefully make us feel even more comfortable with our permanent fixtures.

So, please know that surgery is a scary thought.  However, I'm going to tell you that this is the happiest I have been in a very long time.  I've only had Penelope five months and I feel there is literally NOTHING in my way of achieving my goals and ambitions.  My UC was a constant barrier, and every day I find things that I just naturally do now without thinking that would have been a never-ever with UC. 

This is just my experience.  If you ever do have questions or would like to just know more about this lifestyle, please hop onto the ostomy forum and read around...ask questions if you want. 

Happy Independence Day!!!!!!  turn

smurf  


: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


ickypoo
Regular Member


Date Joined Dec 2008
Total Posts : 224
   Posted 7/6/2009 8:21 AM (GMT -6)   
I have had success following the program detailed in "Listen to Your Gut" by Jini Patel Thompson, who provides an alternative (to traditional medical practice) approach to healing UC. If I were to identify one thing in particular that has benefited me the most it would be the use of probiotics (I presently use Natren brand). But that is often only part of the puzzle. It may take some time and trial and error to determine what is most helpful or hurtful to your specific situation - but it can be done.

In my case, I think the cause of my condition was pathogenic (due to prolonged exposure to antibiotics), resulting in my gut ecosystem getting out of whack. The probiotics have been helpful by displacing the undesirable elements with a more desirable gut community. What you eat can influence your gut ecosystem too by providing food to either the desirable or undesirable critters. I wonder if your improved state after flushing out your colon is the result of ridding yourself, at least momentarily, of bad organisms? Just speculating here. I'm not a medical doctor, nor do I play one on TV.

In addition to probiotics, I utilize a number of other things listed in my signature - including traditional medications (although I am phasing those out). I don't know if I will be deemed "cured" if I am able to lead a med-free existence (my goal) - but I will be cured enough for me.
Diagnosed with UC in 1990.
Current Meds: Sulfasalizine (2 g) (1 g) (500mg), Rowasa (now and then), Folic Acid (1 mg)
Supplements: fish oil, flax oil, glucosamine, CoQ10, fiber, aloe vera juice, probiotics.
Other: Raw Milk for breakfast. Currently exploring a raw milk fast one day/week.


Old Mike
Veteran Member


Date Joined Jan 2007
Total Posts : 3864
   Posted 7/6/2009 8:54 AM (GMT -6)   
What you are seeing through the scope preps is colonic lavage. You flush lots of bacteria out, endotoxin removal
also bacteria are killed by osmotic shock if the prep is a salt like Fleets.
Here  is one link to clear c diff infection, info on this is difficult to locate but I have read that up to a 5% remission rate
for UC has been achieved just with lavage.
I have noticed this myself.
Warning these chemicals can irritate the gut, and cause a chemical colitis in some people.
Old Mike
 
 
 
 
 

jars05
Regular Member


Date Joined May 2003
Total Posts : 297
   Posted 7/6/2009 10:23 PM (GMT -6)   
I never stop working out. I'm no gastroenterologist, but exercise should never be put on the back burner. Working out keeps me sane.
Age: 31
Location: Missouri
Diagnosed with UC in 1997.
Medications: Mesalamine rectal meds, back on 100 mg Azathioprine
 
 
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 7/7/2009 12:06 PM (GMT -6)   
Notcryingwolf, a predigested liquid diet can help people with UC achieve remission in that it allows you to nourish your body while allowing the colon time to heal. Since you noticed improvement in symptoms when your on the 24 hour liquid diet, this may be something you'd like to consider. You might also consider an elimination diet to help you pinpoint the foods that trigger flares/cause symptoms for you personally. Everyone seems to have different issues, although gluten, dairy and fructose are often mentioned by folks on this forum as problematic. To do an elimination diet, you might start with 24 hours of juice fasting, then begin to introduce one food every day or two, starting with the items you think are the safest for you. When you begin to have symptoms, you'll have identified at least one of your triggers. Of course, this is difficult to do because you get hungry and feel limited.

Alternately, you might wish to check out the book The New Eating Right for a Bad Gut which outlines the foods IBDers generally find to be safe or problematic. It would allow you to eliminate the most obvious offenders and experiment without the difficulty of a total elimination diet. There's also excellent information on omega-3 supplementation to reduce inflammation - another dietary key to long-term remission.
 
And I agree that unless you're in a severe flare, are too weak or anemic, you should be able to work out. Weight training helped me regain healthy weight and rebuild bone mass lost from taking prednisone early in my diagnosis. Moderate workouts can increase energy and blood flow and help you feel more in control of your health.


Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips. Scope on 6/22 showed no inflammation at all.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 

Post Edited (princesa) : 7/7/2009 12:09:51 PM (GMT-6)


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 7/8/2009 11:36 AM (GMT -6)   
Oh. *big sigh*
 
I wish I could have worked out while sick.  I tried many times...I couldn't mow the lawn without having severe tummy pains.  I'm so jealous of you all who can continue your workouts. 
 
I can work out now!  My husband got me a jogging stroller and running shoes for my birthday.  LOVE THEM!
 
smurf  
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


chlohan
New Member


Date Joined Jul 2009
Total Posts : 2
   Posted 7/8/2009 12:20 PM (GMT -6)   
I continue to run and swim with UC. I even managed to run a half marathon while in the middle of a flare. My GP was not keen on me doing it but gave me some codeine to help on the day. (The training was eventful at times!) However my consultant was keen for me to continue if I was able to. I certainly feel better for exercising and as long as I feel well enough I have every intention of carrying on. turn
 
 
 
 
 
 
 
 
 
 
 
39 year old female from UK diagnosed Dec 2008 with left sided UC at least. Currently taking 6x800mg Mesalazine and nightly foam enemas.
 
 
 
 

notcryingwolf
Regular Member


Date Joined Jul 2009
Total Posts : 21
   Posted 7/10/2009 3:22 PM (GMT -6)   
Dr said that the problem is bleeding, and exersize elevates blood pressure, he thought I should wait through the flares before elevating blood pressure.

Also, I am trying eliminating things, but either way, I am ok for a couple days after flushing... with anything really, then it comes back.
Diagnosised in Feb, 2008 at 29 years old.  Currently on no medication against recommendation of Dr, in search of a cure, not a band aide.  Previously on Predisone, Canasa, Lialda. 

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