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

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.

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.

I don't take meds because mine has not come back as bad as my first flare, but I do have to say it is always on my mind. 

I don't let it control me though, I still work out, eat healthy, and try to stay active outside.  As for diet, like jamo said everybody is different, I can't eat bananas but most people can.  I personally find fresh crushed garlic settles my bm to allow me to go for a walk so I include that in my daily diet.

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

princesa said...
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

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

Very interesting seeing you take glutamine and fish oil caps. I used to take them all the time, but haven't recently. I still have some of both laying around. Maybe I'll start taking them again.

Thanks for your reply.

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.

UMDTerp2001 said...
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.

can I take those while bleeding?

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.

Hi Newbie,

Sorry you are now part of our 'club' but don't worry things will improve.  Sounds like you are on a very low dose of Sulfazilene (spelling?)  I take 4800mg of Asacol a day and I'm in remission. When I flare, I find I need prednisone to get it under control right away.  Also, you definitely should be using Rectal Meds.  They are the silver bullet and really help heal that lower part of the colon that resists meds.

Regarding diet, I HIGHLY recommend you check out the book "Breaking the Vicious Cycle."   It was written by a woman whose daughter of 6 was diagnosed with UC.  It contains the Specific Carbohydrate Diet which I've followed for a year and a half.  It has defintely helped me get into and maintain remission.  It's a tough diet at first but after a couple of months it gets easier to follow.   You'll need support to keep on track. 

Good Luck!  Talk to your doc about meds and if you don't like your doc's response...get a new doc!  So many of us have had crappy (pardon the pun!) doctors and had to find new ones.  You don't have to stick with the first doc you see.

Best,

Susan

icanrace said...

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

Very interesting seeing you take glutamine and fish oil caps. I used to take them all the time, but haven't recently. I still have some of both laying around. Maybe I'll start taking them again.

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

I agree with other posters about probiotics... you need to look into that, but you may want to proceed cautiously while you have bleeding and serious inflammation going on. Natren and Custom Probiotics are a couple of respected brands. I'll second the recommendation to check out the Specific Carbohydrate Diet, too.

Hang in there. My best advice is to educate yourself. I have a whole library of IBD books and a plethora of Web sites bookmarked. There's some amazing info out there you won't get from most gastro docs. It does get better. I was in your shape or worse, when diagnosed and have enjoyed several years of remission.

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

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.