RECENTLY DIAGNOSED WITH UC (PLEASE HELP)

first off, my story is very similar to yours up until the post-colonoscopy part. my doctors put me on prednisone (corticosteroid of some sort), imuran, and asacol (a version of mesalamine). personally, i saw a slight decrease in blood after about a week or two, but was still going to the bathroom upwards of 15 or 20 times a day for almost two months. finally, i ended up in the hospital, they put me on the "big guns" IV steroids, and started me on remicade. after about 2 weeks post-remicade, my stools finally dropped to about 5 a day, and i have been down to about once a day since about 4 weeks post-remicade.
as far as probiotics, my GI didn't suggest them until i started having trouble with an intestinal infection (C. diff.) because of how my system had been so cleaned out the past several months. i believe the probiotic supplement is just intended to put the "good" bacteria back into your body. not sure if this is something that would help with the actual colitis, tho. just ask your doc.
a note on diet: when i was first diagnosed, i spoke with a family friend who had mild colitis (she could control it through diet. no meds) She suggested the "B.R.A.T." diet (bananans, rice, applesauce, and toast) whenever i was in a flare. for her, this worked. for me, it made things worse. i was getting almost no nourishment and was only losing it bc of the diarrhea. so, a word of caution: don't dramatically alter your diet unless your doctor suggests it.
if you want any more info, feel free to email me. the worst thing about colitis is that it's like looking for a needle in a haystack: very rarely does something work well for two people, so it might take a while to get under control.
good luck, and i hope you feel better

stay hydrated,
james

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James

21 yrs old, diagnosed severe pan ulcerative colitis 2 Mar 2007
Hospitalized 27 Apr-5 May 2007
Remission since 4 July 2007
Asacol (mesalamine) 400 mg x 12 daily
Remicade <--first infusion on 3 May 2007; currently once every 8 weeks
Imuran (azathioprine) 50 mg x 2 daily
Eating fruits and vegetables like there is no tomorrow...
"God bless Remicade!"

Take a deep breathe.  Everyone responds to medication differently and at different times.  The main thing is to take your medication as prescribed and be patient.  Also watch your diet.  It may help to write down what you eat so you can see the impact it has.  I can not eat/drink dairy when I am flaring. 

Take it one day at a time and things will be better.

 

 

o, and when you finally start talking to your doctor about remission:

remission is not having (or letting) your life be altered by colitis. at all. never let anyone tell you differently.

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James

21 yrs old, diagnosed severe pan ulcerative colitis 2 Mar 2007
Hospitalized 27 Apr-5 May 2007
Remission since 4 July 2007
Asacol (mesalamine) 400 mg x 12 daily
Remicade <--first infusion on 3 May 2007; currently once every 8 weeks
Imuran (azathioprine) 50 mg x 2 daily
Eating fruits and vegetables like there is no tomorrow...
"God bless Remicade!"

thanks for your prompt replies!

Here is one thing that I do not understand and perhaps someone can help me:
when I feel the urge to go (sorry if this is gross) I feel like I have a dry-heeve type thing going on down there. It's like I have the gag reflex with hardly anything coming out other than some blood etc. So with that said, I personally THINK that with the straining I'm doing (or the gag reflex description) will not allow the sores to heal. Is that thinking right? If I'm putting pressure or tension on the sores frequently, how can they possibly heal or get better?
All of this is soooooooo complex, ughh

I too was like you, extremely healthy, worked out 4 times a week, good body weight, ate healthy, and hardly ever got sick, not even colds, then bang one day, bloody d. I was shocked and in denial.

Hang in there. You'll get it under control and hopefully will enter remission soon. Similar story here with workout and being absolutely healthy. Did you have any dramatic increase in stress level recently?

As far as your questions go, it takes time for meds to start working, even for the strongest ones. Urgency will holefully be controlled once meds start kicking in, probiotics take even longer time to start working - 2-3 months.

Four sulfasalazine pills a day, if they're 500mg, is what my GI considers a maintenance dose, not a therapeutic dose. Back when I was really ill, I took eight a day. If you don't see improvement in a few days, you may want to ask your doc about increasing the med. My feeling is unless you're on pred, all other meds are going to take a while to kick in. If you're losing alot of blood, your doc will want to check your iron/hemoglobin levels.

Check out Jini Patel Thompson's site for a wealth of info on probiotics, aloe vera, l-glutamine and other supplements that can help you pull out of the flare. She has a book - Listen to Your Gut - that has diets that address various symptoms: bleeding, diarrhea, etc.

http://www.jinipatelthompson.com

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Diagnosed with ulcerative colitis spring 1999

I did have an increase in stress due to a particular project I was working on. I finally got it done and out the door though. Perhaps that had something to do with it.?

I'm taking (4) 500mg tabs per day.

Hi there. Sorry to hear about your recent diagnosis. I understand completely how overwhelming it is at first to try and understand what exactly this disease is all about. Try not to worry. The "gag reflex" you refer to is caused by inflammation in the rectum and should subside once the meds start working. Yes, it will likely take a few days as your doctor said before you start seeing an improvement from the meds. I'm flaring at the moment and have been try the BRAT diet that James mentioned and it seems to be helping quite a bit with the D. I'm not ONLY eating those 4 foods but making sure to get some of each in my diet every day. Hang in there...make sure you get lots of clear liquids into you.

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Sandra, age 34

For me I needed Prednisone to get the bleeding, urgency, frequency under control. I started at 40 mg and tapered by 5 mg per week. I was also put on Colazal at the same time, which I believe is similar to the Sulfasalazine you are on. I would highly recommend that you add a probiotic to your daily regimen at some time. Some say its not good while flaring but I think it is good to add as it helps restore good bacteria. I have had success with the Super Acidophilus at GNC and Primal Defense. The sores probably won't begin to heal until you get the inflammation under control through the use of meds. The prednisone is not a preferred route because of the side effects but it is very effective at getting the inflammation under control and side effects generally go away after you stop using it (of course longer term use is another story). I would caution you to listen to your doctor and stay on whatever meds he prescribes you and to try the natural stuff once you get things under control. I will say after a year long battle with UC and not taking my meds at times and all I finally am in a pretty good remission so there is definitely hope. I was going 10-15 x/day, anemic, bad joint pain after a while, etc. Now I am eating/drinking whatever, no pain or urgency, 2x day. So stick with it, stay on the meds and get the inflammation under control. I know there is resistance to meds when this thing first hits you but through my experience they are very important in achieving and maintaining a state of remission. I also attribute my healing to taking my probiotics twice daily.

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I'm very familiar with those GNC products as I worked there for a few years :)

Thanks for the advice!

Another option to discuss with your Gi if you feel you aren't improving is rectal meds. I know how horrible it sounds but they will help. Increasing your oral meds may also help.

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Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, Rowasa every other night, down to 15 mg pred.
75mg Imuran starting 8/23/07---fingers crossed!
Prontonix once daily for acid reflux, zofran twice daily for nausea

Hi and welcome to Healingwell. I'm sorry that you got the Uc diagnoses but just the fact that you're reaching out trying to find answers is a good step in the right direction. Please read all the information you can find on this including the website www.ccfa.org This is a lifelong chronic illness with many ups and downs so knowing things in advance will make this a less confusing and scary disease. Also please don't apologize for "gross" talk. It's the nature of the disease and trust me when I say that we can all relate. So "poopie" talk is quite acceptable here! :)

I agree with the others, it takes time for the meds to work. The more inflammation you have the longer it will take to heal. It won't be an overnight thing. Do you know the extent of your inflammation? I know you said to the left side but all (except Ulcerative Proctitis) involves the rectum and left side of the colon to a degree. Please look into rectal meds if you don't see any more improvement within 2 weeks. This will allow the rectum to heal easier then with oral meds.

You have a lot to learn, but please don't hesitate to ask any questions you have.

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I do believe that the rectal med Cortofoam really helped me quick with the urgencies. It gets straight to the butt of the problem. (lol sorry, had to try a little humor) They sound a lot worse than they actually are.

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Just diagnosed Aug. 14/07

Hi Newbie,

icanrace :)

Unfortunately it can be the nature of the beast when dealing with "false urges", cortifoam as suggested above may very well help you with this...

And yes, probiotics and fibre supplements (if you're experiancing D) are 2 good steps in the right direction.

I use bee propolis (natural anti-inflammatory) which stopped all my bleeding and severe pain...don't use bee products if you're allergic to bees though.

:)

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

L-glutamine helps repair the gut and helps control, if not eliminate, diarrhea. Fish oil caps (omega 3s) are natural anti-inflammatories.

This is why I like the primdadophilus reuteri made by natures way....

Primadophilus Reuteri, Capsules. Our Top-Selling probiotic brand Primadophilus blended with clinically proven Lactobacillus reuteri. Reuteri is one of the first strains of friendly bacteria to pass from mother to child where it rapidly colonizes and becomes an important part of the gastrointestinal flora.


-Reuteri stimulates gastrointestinal epithelial cell development and improves intestinal cell structure leading to more efficient nutrient uptake, enhanced physical growth and overall better health.


- Reuteri is the only lactobacillus species to produce and secrete reuterin, which has been shown to exhibit broad spectrum antimicrobial activity.

- Reuteri uniquely contains the specific protein "AGGH" that encourages lactobacteria to cluster and colonize in the intestinal tract. In clinical use, Reuteri effectively colonized in over 90% of patients.

Reuteri supplementation is clinically shown to promote healthy digestion and intestinal integrity in humans. It is also being researched for cholesterol control, nutrient absorption, immune system support, seasonal respiratory health, and vaginal health....and it aids with lactose intolerance as well.


:)

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

Hello. My story is similar, I was diagnosed with UC at the beginning of August after a month of having the symptoms (I was stupid and tried to ignore them...). Mine is left-sided, but my doc put me right on a Colazal, Rowasa, Prednisone regimen, and with that I saw results within days. It was a shock for me, I'm 19 years old and there's no history of anything like this in my family. I'd never heard of it or IBD or anything remotely close. For me, the worst part has been dealing with it emotionally. I'm not even sure why it's been so difficult, maybe just on top of everything else I've gotten overwhelmed.

Sorry to digress, I hope everything works out for you, and I'm sure your medications will kick in before you know it. Hang in there, it will get better. :)
-Rachel

Hi! My story is quite similar. I was diagnosed in July with UC after having the symptoms for about 3 months. After the diagnosis (ulcerative orthitis) my doc put me in Salofalk but I didn't see any improvement (while i was taking them for almost two weeks), so i called him and changed Salofalk with Asacol suppositiories (500mg 2/day), that I am still taking. With Asacol my bleeding stopped after 10 days but my stools become "solid", as they used to be prior to all these, after two months. If you don't see any improvement from day to day, than maybe you should call your doctor.

Be positive and everything will go fine!!

If you're not seeing any improvement at all after a couple more days, I'd definitely contact your doctor.  You may need to up your dose or take prednisone to get you out of this initial flare.

The urgency -- we hear ya.  Been there.

And I agree with the earlier poster who said you won't be in remission until you're back to normal -- no false urgency, no extra mucus, no blood, no frequent trips to the bathroom.  Any of those are signs that your colon is still inflamed.

Rectal Meds. can work very quickly (try Rowasa). If it works, find a maintenance dose and keep using it. If you stop using it altogether, all the symptoms most likely will return.

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