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21y/o Diagnosed with UC

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Posted 10/20/2011 6:08 AM (GMT 0)
Hello there everyone!

New member here that was diagnosed with UC just yesterday. This problem originated my senior year in high school when I started having painful bowel movements. It later progressed into mild/moderate rectal bleeding. I have been flare free for a year, up untill a couple months ago that I started having rectal bleeding. I first did a virtual colonography a couple years ago (which found nothing), and i just had the colonoscopy performed yesterday. The doctor prescribed me with 4.8 grams of Lialda per day. All i know is that i have been feeling loopy ever since they put my under anesthesia... I don't know if its the steroids, anesthesia, or a combination of the two but i had to leave class early today because i just couldn't focus. I would like to take a more natural approach to calming down my UC. I believe that the body and mind can overcome any illness. With proper diet, mental state, and knowledge i know i can overcome this issue and live with UC. I joined this forum to gain knowledge on effective treatments and to help support/be supported. :-) :-) I always maintain a positive outlook on life and i know for a fact that it could be way worse. To me this is a blessing in disguise.

Ultimate goal: To be flare free and to be in a healthier state of mind and body, than i was before being diagnosed with UC.

I've done minimal research and i have found to include in my diet: VSL 3, melatonin, Vitamin D, glutamine, LDN (if absolutely necessary),and (open to suggestions)

I've also learned to exclude: High fiver foods, gluten, foods with high acidity, processed foods, and (open to suggestions)

Looking forward to all your insight/greetings and to being an active member of this community :)
Posted 10/20/2011 1:00 PM (GMT 0)
1990UC,

Welcome to the forum. Glad you found us, albeit it wouldn't have been better if you hadn't been diagnosed with UC.

I think it's great you're looking to find alternative strategies to deal with UC, and I see you're already up on some of those.

Here's what's worked for me:

1) Diet is key for me: I do the SCD diet, and I am very, very careful with food combining, because if you mis-combine it creates havoc! Here's some info on it: http://cureforulcerativecolitis.com/step-1-methodology-to-eating

2) Adding L-Glutamine 15 grams - for colonic repair.

3) Adding slippery elm bark powder - 1 tablespoon mixed in a little water, 3-4 times a day - IMO it is the equivalent in nature to the 5asa's.

4) Probiotics are key. If you can get your doc to write you a prescription for VSL#3 DS - that would be better, stronger, and probably cheaper ( IMO 3 x per day at least) than buying VSL#3.

5) Drink lots of good water.

6) Get your vit. d and b12 blood work done, to see if you are deficient.

7) SCD diet - specific carbohydrate diet - many have had lots of success with it. If you can't do it because it's so strict, at the very least do dairy free, wheat free, gluten free.

8) start a food journal and see what correlations come forth

9) Do some research on LDN - low dose naltrexone, you can search this forum as they are several threads on this. I can tell you it works! Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
http://www.ncbi.nlm.nih.gov/pubmed/21380937

https://www.healingwell.com/community/default.aspx?f=38&m=2204683#m2222188, https://www.healingwell.com/community/default.aspx?f=38&m=2129791&p=1

10) Adding rectal meds. Are you on any rectal meds like canasa suppositories or rowesa enemas?

11) You may want to add liquid vitamins/minerals to make sure your stomach does not have to do the work of breaking them down, and hence not absorbing them.

12) Also, I've been supplementing with good quality whey protein - Dr. Mercola's Pro-Optimal Whey, which I make with almond milk ( you can see from my sig).

13) Astaxanthin is a great anti-inflammatory

I think the more information you can have on UC and all its issues, the better you'll feel, albeit after you get over the feelings of being overwhelmed by it all (i know, :()

Good luck, and I hope you start to feel better soon.

Let us know how we can help you.


Posted 10/20/2011 3:37 PM (GMT 0)
Priceless! Great information you gave me their. Thanks, InSoFla :).
Posted 10/20/2011 5:38 PM (GMT 0)
Hey :) I'm a 23 year old female who's been suffering from the same problem since I was 15 years old. Would be great to talk to you about it. xx
Posted 10/20/2011 7:40 PM (GMT 0)
1990UC,

If you need more info, let  me know.

:-)  

Posted 10/20/2011 11:12 PM (GMT 0)
Hey buddy,

Welcome to HW!

Hope things are settling down for you.

This forum is great and members here give pretty dam good recommendation/advices when needed under whatever predicament you're in with Crohn's/UC. Take advantage of it!

I see that you already have a great regimen which coincides with some of the things that I supplement too.

Insofla already made some good recommendations.
LDN is basically one of the most innocuous drug for autoimmune that I can think of. It won't hurt to try it.

And don't forget to do some light exercises like walking or running on daily basis when you're feeling alright.
:]
Posted 10/21/2011 2:06 AM (GMT 0)
i'm also 21 years old and was diagnosed in the 6th grade. i'd be glad to help out in any way that i can, even if it's just being here when you need to vent. the people on here are all great! they've been a huge lifeline for me since i got to college.
Posted 10/21/2011 2:42 AM (GMT 0)
I think it would be a good idea to keep taking Lialda and add rectal meds.
Posted 10/26/2011 5:58 AM (GMT 0)
Hello again everyone! Its been several day since posting but I'm back to share more of my story. Last Friday i visited my GI with loads of questions to ask him. We went over my Colonoscopy and determined I have a mild case of Ulcerative colitis effecting the first third of my colon.

I then started asking about: Probiotics, diets to consider, diets to avoid, including fish oils/protien/ other beneficial supplements. His answer to all of this was literally "don't waste your time." "Eat and drink whatever you want and Lialda will take care of the rest." I was dumbfounded... I knew right then and there this doctor wasn't gonna be of any help to me...

I am now considering visiting a "Nutritional pathologist" who supports hollistic treatments for my UC. I have heard nothing but good things about this guy but the only down side is its costs a pretty penny $$$. Money is of least importance to me, even more so when it concerns my health.

Im still on Lialda 4x/day, Melatonin 3mg/ 2x25 gm Optimum Nutrition 100% whey protein shakes.

Symptoms are better but still include: mucus in stool and light/moderate blood on the tissue paper. I have fatigue every so often but its difficult to determine whether its my antihistamine/airborne allergies.

All post are welcome and appreciated



:-) smurf
Posted 10/26/2011 11:40 AM (GMT 0)
1990UC,

Not too many gastros believe in diet, supplements, although some will in probiotics.

Although costly, it may be a good idea to go to a holistic doctor. Especially if you can get him to prescribe LDN (please see my earlier post to you of the 13 helpful things).

But if you don't want to spend the $$, maybe for now you just need to find a gastro who will actually listen to your concerns?

I'm glad your symptoms are getting better though.

Posted 10/26/2011 11:50 AM (GMT 0)
If you don't feel comfortable with your GI, find another one. I really think you should have a GI, even if you want to try other treatments or alternative medicine.

All of the GIs I've had have recommended probiotics--there have been quite a few studies on the benefits of probiotics. There are several types of probiotics--VSL #3, Culturelle, Align, etc. If I recall correctly, VSL #3 is the only one that's been studied in UC patients and found to be efficacious. Personally, probiotics have made no difference in my UC, but I need it for IBS.

If your UC is mild, you may only need Lialda to get into remission. I was diagnosed with mild to moderate UC, and I went into remission with Asacol (same type of med as Lialda) within a couple of weeks. I'd still recommend rectal meds--the rectum is always hardest to heal.

UC is very individualized--what works for one person will not work for another. Start a food diary--write down everything you eat and any symptoms you experience afterward.
Posted 10/26/2011 1:40 PM (GMT 0)
VSL 3, melatonin, Vitamin D, glutamine,

Sounds good. If you check our signatures you will find that many of us take probiotics and vitamin D. Get your blood levels of vitamin D tested so you will know where you stand and how much more you might need to take. Other popular supplements are soluble fiber such as psyllium like Metamucil and fish oil.

Many find that mesalamines such as the Lialda that you are taking to be effective. Mesalamines are probably the safest of the UC meds as long as you are not allergic to them. Mesalamine enemas such as Rowasa are probably the most effective with the least side effects.
Posted 10/27/2011 1:47 AM (GMT 0)
my gi is against all supplements and probiotics, too, but i still take them anyways. you just have to do what's right for your body. you know it best.

i honestly didn't find seeing naturopaths worth the money. just way too expensive and i've gotten better information from this site than what i have paid for.
Posted 10/27/2011 1:49 AM (GMT 0)
bananagirl,

I couldn't agree with you more, and often said that the folks on this forum IMO know alot more than doctors!

Kudos to all these wonderful forumites!

Posted 10/27/2011 3:40 PM (GMT 0)
I cant believe this slipped my mind... From eigth grade till my sophomore year in high school i was on the drug "accutane" on and off... I always see the commercials on TV how accutane has the side effects of chrons/colitis. Has anybody on the forum proved this? Has there been any lawsuits filed?
Posted 10/27/2011 6:02 PM (GMT 0)
Yes. You should tell your GI that you've taken accutane.
Posted 10/27/2011 6:44 PM (GMT 0)
ive heard there has been a few cases where these individuals have won their lawsuits. you should definitely take one up in my opinion
Posted 10/28/2011 3:28 AM (GMT 0)
I've told both my GI and GP and they both doubted that accutane would have any relevance to my UC. I was almost sure of it when i saw the commercials on TV, though. Has anyone else heard of this case?
Posted 10/28/2011 12:32 PM (GMT 0)
1990UC,

There is no question that accutane use results in UC.

I'm surprised your doctors haven't told you so.

In any case, I would recommend you contact one of those lawyers that is involved in the class action suits.

I'm sorry that this happened to you.

Posted 10/28/2011 3:04 PM (GMT 0)
Hello and welcome to the forum... Love new members, but hate to meet under such crappy (no pun intended lol) circumstances....

My GI doctor was all for me trying anything that I thought would help with one small note, "If it bothers you then don't take it again"... with that being said, I did change my diet some... cut out almost all fast food, most liquid dairy and no "processed" foods like hot dogs and sausage, also veggies... they gave me alot of issues. I added in Aloe Vera juice which alot of folks on here said did nothing for them. I was also on 4 Lialda a day. And Lialda alone didn't sooth all my symptoms by itself ever. So, added in aloe... made a difference, almost all of my symptoms were significantly better but not fully gone. Added L-Glutamine powder and now I am pretty much symptom free... my life is almost back to normal with just some left over anxiety every time I feel a twinge in my abdomen... got to get used to being healthy and well again I guess. I also gained back over 20 lbs I lost when I was at my sickest...
Hope this helps :)
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