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Im 23 and i was diagnosed a year and a half ago.. And now I'm after the second attack, after hospitalized taking drugs steroids and lots of other medicines I feel like this time my body is not healing its been almost three months an I'm scared that this time that I'll be hospitalized they will not be able to stabilized my situation. I'm So scared, and my family always telling I should go work or start doing something  with myself but they don't understand I'm not healed yet and what I am facing through its tuff not to eat anything and watch what u eat all the time to see al the ppl around you eat what they want and ur stuck with your avocado day and night, im so emotional these days and I don't know what do to to make myself avoid this feeling and realize that this is the situation and it's for a lifetime I just can't accept it. 
I really need help and support from people that going through the same thing

 Reply posted for Nofaritush.

One of the first things you GOTTA DO is come to the REALITY that this is REAL.  I have ulcerative Colitis and am on Remicade which Oct. 4th will be my 4th infusion!  People who do not have this disease have NO CLUE how you feel, what it is like, & how much you will have to adjust around this disease!  The doctors may NOT TALK TO YOU ABOUT YOUR DIET!  You NEED to find out what foods WORK and what foods DON'T WORK!  Everyone with this disease is different so we all can not say oh yea this works..because WE'RE ALL DIFFERENT!  Don't let anyone pressure you into working for that ISN'T WISE IF YOU ARE HAVING FLARE UP ISSUES!  There may come a time when you have to wear diapers :( Just this past Tue. I drove to Chapel Hill, NC from Fayetteville (almost 2 hrs) to get my meds to take with the Remicade.  I made it to the parking lot then BOOM (out of nowhere) I went on myself!  It's the worst feeling in the world to be a grown man and CAN NOT CONTROL my bowels!  i told my pastor last night during praise and prayer time that I wanted the church to pray that my anger would leave concerning this disease.  We talked after church and I told him that sometimes I don't even feeling LIKE A MAN...I DON'T KNOW ONE SINGLE PERSON THAT HAS THIS DISEASE AND ABSOLUTELY NOBODY THAT'S BLACK THAT HAS EVEN HEARD OF THIS :( You hang in there...we ALL have GOOD and BAD days!  Accept this trial for what it is & you make whatever NECESSARY  ADJUSTMENTS YOUR NEED to make which WILL INCLUDE your diet!  You have a WHOLE COMMUNITY of people HERE ROOTING for ya so your NO ALONE :) God Bless

 Reply posted for Nofaritush.

I am completely in the same boat! I am 18 and was just diagnosed 2 weeks ago with UC.. I leave for college in 3 weeks and dealing with all of this is really tough right now.  Its been the worst summer of my life because I've been so exausted and unable to do anything with friends because I've had no energy.. I'm happy the new meds I'm on are starting to kick in and help and I've felt better than I have in a long time but it's still hard to deal with the diagnosis.  I think it just helps to know that there are so many people out there struggling with the same issues and feelings!

 Reply posted for Nofaritush.

I am sorry to hear about your condition.  I understand exactly what you feel.  I've had colitis since 2008 and no one knows the severity of your feelings and symptoms.   To say that it is frustrating is an understatement - you can feel all alone, depressed, not want to do anything, etc.  The worst part is that YOU DO WANT to do everything - travel the world, drink alcohol with your friends, eat a WHOLE lot, and sleep through the night without waking up to "go."  If only this disease would go away.  

Between colitis sufferers and chrons sufferers there are also many differences.  I thought talking to someone with my condition would help (and I WANT to), hence joining this site, but I actually discovered that YOUR body is unique to you - people have recommendations but the bottom line is that you must decide what your body can deal with.

Keeping a food diary is a full time task - keep every time you go to the bathroom and everything you eat and drink throughout the day.  Then after a couple weeks you will have some good "data" to go back on.  

I also understand that you need to heal up, but also know that you will be continually healing.  Try not to put your life on hold too much.  I know this is easier said than done, especially if you are like me.  I really can't go in my car or meet my friends at a bar because I will most likely have an accident.  I have pulled over on the side of the road and "went" so I wouldn't have to soil my pants or have an accident.   

I am off all western medicine at this time and I have a Chinese Doctor in Chicago.  

When you are majorly inflamed it makes you more tired, I understand.  I have had many bouts with bleeding.  The doctor in Chicago has managed to take away my blood, so that is a good step in the right direction.  Fixing urgency is next.

 Reply posted for eyb31.

Could only fit stuff about nutrition in last post.  But I hear you on people not understanding and pushing you to do more than you can.  We look perfectly healthy but we're actually doing AWFUL.  I think that's hard for people to understand.  But only you can know what you feel up to.  This disease is so hard to cope with and you're not alone with feeling the way you do.  It's lonely, depressing, happy/exciting when you hit remission, frustrating when you go out of remission, and everything in between. I'm no expert and am new at this too.  It's like trying to learn how to walk again with learning how to cope with and live with this disease.  That is such a nasty word. Disease.  There were many times that I thought about seeing someone professionally for help like a grief counselor or psychologist.  Haven't done it yet, but will let you know if I do and how it helps.  Point is: you are not alone and I understand COMPLETELY how you feel.  Hang in there.  We've got a marathon of a race ahead of us.

 Reply posted for Nofaritush.

It's OK.  The great thing about this forum is that there are tons of people who know EXACTLY how you feel. I'm 24 and next mo. will be exactly 1 yr since my diagnosis of UC-pancolitis.  Just a month after my diagnosis, I had back-to-back hospitalizations for severe bleeding from my colon and almost needed emergency surgery. I was so scared. But what my doctor told me is that we are young sp our bodies have an amazing resilience to bounce back. But so far I've noticed that it takes time--usually a lot more than we want. 

I was on a low-residue diet for months and I was getting so sick of being restricted about what I ate and so bitter about the people who could eat what they wanted.  I had lost about 20 pounds and needed to get my weight back but watch the fiber intake. What helped me A LOT was buying a food scale so I could calculate exactly what I was eating.  I bought an eatsmart brand (~$35) that is really amazing and has held up well over the last year.

My GI doctor said that I should eat less than 10 g of fiber a day for a low-residue diet (usually these guidelines are weight dependent so ask your GI doctor what it is for you). Fiber adds up fast. A bagel has about 2 grams and a potato has about 3. There's half your fiber allowance and when you're so limited with what you can eat, it's hard to juggle everything. 

I ate a lot of protein (lunch meats, lean meats, cheeses, jerky, bacon) and ensure because they contain no fiber.  To get some fruits and veggies, I drank V-8 fusion juice because it has no fiber.  Would suggest talking with your GI doctor about specifics of what you should be eating (g of fiber, foods to avoid, calorie intake, ensure, etc.) and then talk with a nutritionist to get a game plan to achieve that.  Your GI doctor should be able to suggest a nutritionist.  Hope that helps. 

 Reply posted for Nofaritush.

Soooo many people know what you're going through, and most important God understands, but don't just take my word for it, sign up for camp oasis and see just how many understand.

 Reply posted for Nofaritush.

Just hang in there. But, if its been three months I would suggest you ask your doctor about stronger meds or surgery if you are already on remicade or anything of the like. You should be on a low residue diet. NO veggies, fruits, seeds, nuts, anything high in fiber is a no!!! These do not digest and can be a real pain moving through the digestive system. Until you get your symptoms under control, and even after you do, you should stay mostly low fiber. However, you can cook some veggies and fruits (without skins) like potatoes, sweet potatoes, pears. You can also have bananas raw. Try doing a liquid diet as well, would give your bowel a much needed rest. IF you wold lke me to give you some of examples of foods, drinks to supplement for solid food, please let me know! 

 Reply posted for Nofaritush.

I totally understand what your going through as I'm going through the same thing and it sucks!
Feel free to text or call me 617-694-3754.
Feel better!
XO