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Posted 11/25/2009 2:33 AM (GMT 0)
Hey everyone ..

so tomorrow it will be exactly 2 months since I was diagnosed with UC .

I am 17 years old and I've never been really sick like this before so I'm actually really bothered by this, as I'm sure many of you are too because let's face it - this disease is painful, embarassing and just plain annoying !

Right now I take 2 Salofalk's twice daily . And I take Salofalk as a suppository at bed time ..

When I first started taking it I saw an improvement right away, but the last few weeks I've gotten worse again !

Ok, lol i get so embarassed talking about it but it's so hard to talk about it with people who don't have it and I just want to know if what I'm feeling is normal !

so .. in my stool there is still some blood sometimes, and it's hardly ever solid anymore and I feel like I have no control of it .. like it's not always diarrhea but it will feel like it ? Like and I will have to run to the bathroom and when I push it's only gas but I KNOW I have to go, and then once I stop pushing a whole bunch will come out without my control you know ?

Lol I feel so gross now :(

I just don't know what to do . I cut out whole wheat bread because we think the fibre wasn't helping and I wanted my stool to not be so loose ..

I don't know if it's stress because of university applications coming up . I heard that can trigger it sometimes ?

I don't want to go on different meds because I haven't had side effects, and my doctor said the higher the meds, the higher the risk .. And I'm terrified of sickness so this whole thing freaks me out .

If any of you have advice on diets or meds or anything else I would reeeeally appreciate it

Take care everyone :)

Posted 11/25/2009 2:43 AM (GMT 0)
I am sorry you were diagnosed with UC. My son was also diagnosed at age 21. Through this forum and research I have met with several people who were able to control their symptoms with a diet called Specific Carbohydrate diet by E. Gottschall. I never knew if it helped my son or not as he was always been on other medications at the same time he was doing the diet, but you may want to try it. (All the info is online, you don't have to buy the book). Another forum member (Kim ) here has recommended doing an antifungal diet which has been working for her, you may want to read her posts or look Kaufmann/Holland, antifungal diet. Good luck!
Posted 11/25/2009 2:47 AM (GMT 0)
     Welcome and sorry to hear you are going through this.  I am a LOT older than you, 63 and I wasn't diagnosed till I was 52 but always had some kind of bowel issues.

     I experienced the same symptoms as you and I know fiber, while flaring, can really put you in a tizzy.  Try eating a low residue diet and six small meals a day.  If you are lactose intolerant try Silk instead of milk with your cereal.  I eat Rice Krispies.  My nutritionist suggested I put 1T of Red Mill ground flaxseed meal on top of my cereal.  I also put half a banana in it.  Stay away from caffeine and diet drinks.  Do not consume anything that has an ingredient ending in TOL .  This may give you diarrhea, such as Sorbitol.  I eat Activia yogurt or half a turkey breast sandwich for lunch.  Drink plenty of water.  I eat a LOT of low salt or unsalted topped saltine crackers with Smart Balance spread.  Salmon is really soothing to the gut and I try to eat it three times a week.  I realize it may be an acquired taste but try baking it with turmeric and a tad of seasoning on top with a bit of olive oil.  I can eat very well cooked vegetables, such as carrots and string beans...NO CORN.  Stay away from salads until you heal.  You can get a low residue diet online.  Take a probiotic.  I take Powerdolphilus by Country Life and order it online.

     I know this is almost impossible for young people these days...but try to alleviate as much stress from your life as possible as this aggravates your condition.

     If the flare gets worse your doctor may put you on prednisone.  It does help you out of flares but does terrible things to your system if on it too often, like it did to mine...osteoporosis, high blood sugar, insomnia, and now my blood glucose has been very high...but then my age is against me now too.  I started Remicade last week as the 6MP has stopped working for me.  I was on that for seven years.  Praying Remicade does the trick...so far, so good.  Let us know how you are doing dear.  We all care.

Posted 11/25/2009 3:08 AM (GMT 0)
sorry to hear about your plight!

I was diagnosed recently myself and yes, it is a very embarassing disease. What you're experiencing sounds similar to the bad flare I just got out of. Unfortunately, I had to get on prednisone and spend 10 days in the hospital to do it. Go see your doc again.

Some things that have helped me in achieving remission (well--almost... I'll call it that when I finish the taper of prednisone):

1. Keeping a detailed food journal, also recording bowel movements in detail (it was gross, but I learned a lot about how the disease and my body works and how food does--and mostly doesn't--actually affect the disease in my own body). Also good, accurate info for my GI.

2. Yoga--good mind/body connection, lowers stress, etc.

3. Working with my GI closely--he's good and the medications can help, but sometimes seem to make things worse. Have patience. (Oh yeah... and side effects suck).

4. REST! Getting 8 hours a night is minimum necessary and do whatever you need to do to get it.

5. Exercise (when you're not doubled over the toilet all day with 15-20 BMs/day... obviously)--stick to stuff that's near a bathroom as exercise often stimulates my bowels immediately and unpredictably; light exercise during disease and recovery, harder when you achieve remission.

6. Eating healthy, balanced meals (again, food journaling is important because you might actually tolerate fiber just fine and it's REALLY good for you... I eat TONS of fiber from fresh fruits and veggies, but some people cannot tolerate it. During a flare, stuff did pass right through me that now is no trouble, like spinach and mushrooms... so keep in mind that flaring might require some diet modifications, but you should go back to healthy ASAP!).

7. Probiotics (seems to be doing some good) and Multi-vitamin supplement (keeps energy levels up during flares).

Good luck! Go see your doc again, since your meds aren't working anymore.
Posted 11/25/2009 3:33 AM (GMT 0)
Oh goodness, thank you all so much for replying so quickly ! :)
Sorry for all your struggles with UC but it sounds like all of you are really aware of each of your cases, or in guila's situation, your sons case .
My mom got me a journal to write down what I eat and the BM details . . but it's just hard for me to do that because I'm at school all day and I get scared other people may see it .
Also, with the whole eating several small meals throughout the day it's hard because I have school, volleyball and work and my mom doesn't want me eating packaged things if they have a lot of ingredients .. meaning like granola bards and nutrigrain bars and things like that to keep me going ... so I have no idea !
I'm taking that One- a -day women's multi-vitamin and I've been drinking water like a fish !
I'm supposed to be doing yoga but I just never have the time right now .. And i should definately catch up on sleep . I usually get about 6 hours a night and that clearly isn't helping .
I'm taking all your suggestions though and I will see what happens ! Doctors appointment in another month .. maybe i should get one sooner . AND I just had an activia :) I'm going to go over the foods and diets you all suggested tomorrow night aswell so I can really try and get a hold of this .
Thank you all so much, you all have very kind hearts and I wish you all well too :)
Posted 11/25/2009 4:50 AM (GMT 0)
First, hi and welcome! I'm so sorry that you were diagnosed with UC at such a young age...I really hate seeing things like this.

I would definitely try to get in to see your doctor sooner. Ask if you are on the maximum dose of Salofalk. If not, I'd strongly consider raising it. Quite often, it takes a high dose to really get into remission, and then you can taper to a lower dose. Also, ask about using a mesalamine enema (mesalamine is the active ingredient in salofalk) instead of the suppository. It will reach much higher into your colon than the suppository will, and will help heal everything that much better.

Good luck with everything!
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