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Ulcerative Colitis
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Posted 11/16/2014 2:47 AM (GMT 0)
I am 18 years old, college student who suddenly started having loose stools mixed with blood ,mild abdominal discomfort, occasional bright red fresh blood(2-3 times only) and going to bathroom 4 to 6 times a day.
A GI specialist did colonoscopy and colon was continuously inflamed with biopsy showing diffuse, continuous ulcer pattern, rectum involved, pANCA tested negative. Conclusion: Ulcerative Colitis. , moderate severity.
10 days ago, just after confirmed diagnosis, I was started on Prednisone 40 mg orally per day. Within 48 hours, symptoms started to go away and today is 10th day and I have only one ,fully formed stool in the morning,
no pain, eating regularly now , energy good (went to gym today)
I heard that Predisone doesnot prevent flares and should not be continues for more than 2 or 3 months.
I am taking turmeric(curcumin caps) , garlic pills, Omega-3 from flax seed oil and eating regular food.
What is next best medicine for my case to keep me in remission? Any suggestions ,please !
Posted 11/16/2014 3:17 AM (GMT 0)
Didn't the GI prescribe any other meds at all? That's really stupid. Pred only works while you are on it and you should't stay on it long. After tapering off your symptoms are likely to return unless you get lucky with the other stuff you are taking. You should also be on oral and rectal measalamines to hopefully keep you in remission once the pred is tapered off.
Posted 11/16/2014 3:36 AM (GMT 0)
gary is right. pancolitis is a challenge. starting mesalamine drugs asap is wise. if they work well for about 40-50% of folks, and work OK for a bit more. sadly, not everyone. about 2-4% are llergic, and others do not get better. for those who do not respond, stronger immuno-suppressive drugs are generally next.

a few folks, can get some results with restricted foods and/or some nutritional supplements - but this is hit and miss.

good luck
Posted 11/16/2014 3:47 AM (GMT 0)
I assume you are going back to the GI for a follow-up in the next week or so. At that appointment s/he will discuss next steps and the different meds you can choose among. Most GIs would start with mesalamine, and as Gary said, this should be both oral and rectal. Since you had pancolitis, which is more serious, you might also talk about immune suppressants. Listen carefully and consider what your options are. You should start your next med now, not when you are done with pred.
Posted 11/16/2014 4:56 AM (GMT 0)
Hi honey, bummer news! Do not stay on pred long but make sure you taper off it. It can hurt you if you just stop cold turkey. Go get some Asa type medication and possible med that you insert. I know it's like gross but it is way easier on your body than pred. Start those while on pred so you don't flare again. I get do bummed when I hear about your age getting it. Sorry, just eat well and make sure you be careful with pred. It does good job but has the rep as the evil drug. Xoxo
Posted 11/16/2014 5:12 AM (GMT 0)
I concur with the 5ASA drugs (both oral and rectal) and to start them ASAP. Also, make sure to take calcium with vit D supplement while on pred.
Posted 11/16/2014 5:29 AM (GMT 0)
Check out thecomplicatedcolon.blogspot.com

Young blogger with ibd
Posted 11/16/2014 9:51 PM (GMT 0)
Share your diagnosis with your professors, so that if you need extra time or help later, you can have their support.
I agree with above posters about getting on a maintenance med ASAP. Keep that Pred to a minimum. An immunosuppressant like 6mp takes a few months to get cooking, so get back to your GI soon. Make sure he/she is a highly ranked IBD GI if you can, skip the schools health center (except for easy stuff).
Read reading on this site, use your research skills too. Don't believe the best or worst case scenarios...it is a highly individual disease. You might get lucky and have an easy time.
Another thought or two: keep a food journal and log your BM's, stay hydrated, get copies of all your medical tests and lab work, and hang tuff, kiddo!
Posted 11/16/2014 10:30 PM (GMT 0)
Thank you for the support and advise. I found out that my grandma had something like this starting at age 20 and she is now 78 years old. She had severe flares in early age and was on sulfasalazine/ Mesalamine off and on. She raised 6 children and has been active all her life until recently.
I am making an appointment with GI to discuss options of maintenance med. I guess , if mesalamine worked for grandma..it might work for me. Is it true ?
Posted 11/17/2014 12:39 AM (GMT 0)
Yes, mesalamine meds are likely to work for you if Pred gets your colon to remission. Apriso is a newer mesalamine capsule that works well for many UCers + it requires fewer daily doses than the older stuff like sulfasalazine. Have you looked at ccfa.org Website? They gear a lot of their info to young adults with IBD-- so that would give you a starting point to research your ailment online. Sorry you have to deal with this during college, but that happens pretty often with UC so it's important that you find accurate info to better help you with managing it. Be sure to get enough rest even though Pred may make you feel super-energetic for a while. / Old Hat (34 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 11/19/2014 9:01 PM (GMT 0)
In fact, I was pleasantly surprised that Prednisone started showing results in 48 hours and today is 17 th day and I don't have any symptoms. Just a little strange, whoosy feeling. Stools are solid once a day only, no blood, no abd pain. Good appetite, gaining weight again, going to Gym..doing home work .I feel OK.
I have an appointment with GI tomorrow and would like him to put me on Mesalamine preparation and give me a slow pred taper schedule.
By the way, I am excited to read a lot of info in our college's medical library. Interesting facts are
(1) Aloe Vera Gel is now, proven beneficial in randomised controlled trials to maintain remission.
(2) Nicotine patch has shown good results in keeping remmision..its' certain but Doctors do not want to advise Cigarettes or patch for obvious reasons.
(3) Probiotics are undoubtedly beneficial and it is confirmed in clinical research trials.
(4) Lots of research is under way about the wonder Indian herbal spice, Turmeric ..not just for UC but also for many kinds of Cancers.
(5) Feeding the patient , WHIPWORM ova (Trichuris trichura) alters colon mucosa in a way that remission stays longer . (research is in early stages)
(6) Benefits of Buttermilk, Guard, Pomegranate, Gren veggies ,psyllium husk are being evaluated.
I will share more as I read more. Wish you all the best.
Posted 11/19/2014 9:20 PM (GMT 0)
Thank you for sharing those facts. You are quite the bookworm. :)
Posted 11/21/2014 11:29 AM (GMT 0)
I bought some MANUKA HONEY after reading that it reduces GI inflammation and is free from side effects.
Honey is very commonly prescribed in Indian Ayurvedica system.
How different is Manuka Honey from regular honey ? Does anyone have experience with Manuka Honey?
Posted 11/21/2014 1:09 PM (GMT 0)
Just please remember that any treatments, both medical and alternative, have varying percentages of success. Nothing is guaranteed to work in everyone. If I remember correctly, Turmeric and Aloe Vera are anti-inflammatories and Manuka Honey works on viral, bacterial, and fungal type stuff.
Posted 11/21/2014 1:27 PM (GMT 0)
Wow! Keep researching you are amazing! Honey would probably kill me as it is digested differently than glucose or sucrose so I would avoid that for a bit.

TUmeric is great and try VSL3 probiotics, proven great!

Keep sharing! Thank you
Posted 11/21/2014 4:02 PM (GMT 0)
Be careful os snake oil sales people.
Posted 11/21/2014 5:43 PM (GMT 0)

blackjack said...

been in remission for 5 months no blood no mucus and best of all solid stools with regularity 1 to 2 a day.

And you had labs and colonoscopy to prove remission? Or do you mean asymptomatic?
Posted 11/22/2014 3:32 AM (GMT 0)
Whatever you do, stay away from the holistic approach. You can take it, but don't trade it for medicine. Always stay on your medication. I've tried plenty of stuff, every diet and supplement that can in any way help with colitis, and stopping my medications ended up worsening my condition. Please, keep your wits about you and listen to what makes logical sense instead of buying into nonsense.
Posted 11/22/2014 2:19 PM (GMT 0)

The Rock said...
Whatever you do, stay away from the holistic approach. You can take it, but don't trade it for medicine. Always stay on your medication. I've tried plenty of stuff, every diet and supplement that can in any way help with colitis, and stopping my medications ended up worsening my condition. Please, keep your wits about you and listen to what makes logical sense instead of buying into nonsense.

No.
Posted 11/22/2014 6:44 PM (GMT 0)

Guardian7 said...

The Rock said...
Whatever you do, stay away from the holistic approach. You can take it, but don't trade it for medicine. Always stay on your medication. I've tried plenty of stuff, every diet and supplement that can in any way help with colitis, and stopping my medications ended up worsening my condition. Please, keep your wits about you and listen to what makes logical sense instead of buying into nonsense.

No.

Yes.
Posted 11/22/2014 11:48 PM (GMT 0)

Diva2014 said...
I bought some MANUKA HONEY after reading that it reduces GI inflammation and is free from side effects.
Honey is very commonly prescribed in Indian Ayurvedica system.
How different is Manuka Honey from regular honey ? Does anyone have experience with Manuka Honey?

I plan on ordering some of this Honey from Amazon, I don't like the price though, its very expensive but I would like to try it, as some of the reviews for this product are amazing..

I recently ordered a large bottle of Turmeric which I am currently throwing into every meal I make lol smilewinkgrin
Posted 11/23/2014 4:19 PM (GMT 0)
A friend of mine told me that 1.2 billion Indians eat turmeric powder every single day in their curry and there has not been any reports of side effects ever. Seems turmeric is very safe spice.
I agree about price of Manuka Honey..it is expensive..it comes mostly from NewZealand as they mass produce it for the Global sale from Manuka flowers and special type of Bees. I am searching if there are cheaper alternative to NZ manuka honey which work the same .
Also, little more interested in juice of guard+cabbage+carrots+pomegranade. Of Course, medicines are needed but with a good holistic approach, the dose of meds can be kept at minimum to prevent side effects.
Posted 11/23/2014 4:55 PM (GMT 0)
A multitude of studies on turmeric have been conducted on Indians. It's hypothesized that the lower rates of gastrointestinal diseases as well as certain cancers are due to the herbs and spices used in curries. Turmeric is said to be the cream of the crop out of all those ingredients.

If you go to pubmed and search for curcumin (the active agent in turmeric), you'll get roughly 7000 entries - it has therapeutic value for just about every discernible condition imaginable.

Diva2014 - keep this up because you are on to something here. I think you'll be fine because you are equipped with the smarts to deal with the disease. Do NOT let anyone dissuade you from researching all modalities.

Best wishes.

Post Edited (Guardian7) : 11/23/2014 10:13:24 AM (GMT-7)

Posted 11/23/2014 11:18 PM (GMT 0)
A good standard regimen is an oral mesalamine for maintenance such as Asacol or Lialda. And a rectal mesalamine such as Rowasa taken as needed. Popular supplements are probiotics, fish oil, vitamin d (measure your blood levels), and a soluble fiber such as psyllium.

Many members here, whether they take meds or not, find that monitoring their diet for aggravating foods can make life less complicated. Gluten and dairy are the usual suspects but any food can cause problems. So it might be wise to have a food diary. In my case, believe it or not, cruciferous vegetables are a no-no.

Unfortunately, (actually fortunately), I am allergic to the mesalamine meds so I had to find alternative ways to maintain remission. Clinical research has shown that some herbs such as curcumin (turmeric) and boswellia can be just as effective as meds. In my case they are but they are not for everybody.

And certain probiotics have been proven to help too. But rather than spending months or even years of trial and error finding effective alternatives for your body chemistry, it might be a lot easier to take the mesalamines as long as you aren't allergic to them.

Check out our signatures and pick and choose what helps you.
Posted 11/24/2014 6:46 PM (GMT 0)
If you're going to dose curcumin (turmeric) it must be taken with black pepper, a small amount. Apparently just plain turmeric won't do much. But there are some reasons for concern for it's use in GI patients. See this vid http://nutritionfacts.org/video/who-shouldnt-consume-curcumin-or-turmeric/

I had to stop it due to upper GI GERD symptoms.
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