Really Scared, Lots of Questions, New to Colitis!

frequent bowel movements, uncomfortable stomach feeling, cramping, and side effects from the medicine.

Hi everyone,Although, I have had colitis symptoms for the past 5 years but they were mild and I kept them a secret from my parents thinking that it wasn’t too big of a deal. I regret not telling them sooner every single day. So, here’s my story of my awful experience so far, I have nobody I know with this disease and really have no one to vent to so here goes my first time trying to!Well, for the past 5 years I have had diarrhea with blood and cramping. BUT I didn’t tell anyone, I would just say “I don’t feel good” to stay home when I had bad cramping and had to go to the bathroom too often to go anywhere at the time. So anyways I wasn’t going to the bathroom THAT much before and teh cramping was not too bad… until April this year. Now for these 5 years the symptoms would come for a week or two and then go for a few weeks so it wasn’t too bad but when April came i had the same symptoms for a month. So I finally told my mom that “hey, I have had diarrhea for a couple weeks” So we went to the doctors, I didn’t mention the blood for another week. I don’t know why I didn’t think it was a big deal but I’m the type of person that is easily embarrassed and such. I don’t want to give off the impression that I’m a bad kid who doesn’t talk to their parents because I am definitely not. I get 90’s in school in every class, never done drugs, i don’t party, drink or anything “typically teenager” as some would say. My parents are still together so I’m not a kid struggling with a parental divorce, they hardly even fight actually. I do talk to them but I just didn’t tell them about this.I’m getting a bit distracted now, lets get back to april. We went back to the doctors immediately when i told her about the blood and he booked an upper GI for the following week to check it out. 2 days before the appointment I found myself on the way to the hospital. I was going to the bathroom a good 20 times a day at this point, all blood so I felt very weak, and I was quickly dehydrating. The reason I was going to the hospital was my stomach pain was so awful i couldn’t bare it anymore and because I was just losing anything i would drink I was dehydrating. My muscles actually went in shock and I could barley move my limbs, I was basically temporarily paralyzed. So we went to the hospital got a bunch of different x-rays and tests done including an Upper GI that they did at the hospital. I was in there for a week and found out on the fourth day that it was UC.

I have never heard of this disease before, so I didn’t know what to think of it at first. I guess this disease can run in families which actually has me seriously thinking about when I grow up and my future family, I don’t know if i could live with myself if my children also had to go through with this disease knowing that it could be because I had it too. This could be just my mind making me crazy because I recently have totally changed personalities. My mom actually wants me to get a life coach because I’ve been really depressed, maybe from teh pills, maybe from the stress of knowing “I have a disease” maybe it’s a combination of both, I don’t know.

But back to the hospital, I met my new doctor that specializes in this stuff. And finally was let go from the horrible hospital (i hate hospitals) after a weeks stay. So, they put me on predisone I take 45mg a day right now and have been taking 50 for over a month before this week when they FINALLY dropped it down by one.Its giving me awful side effects.. my cheeks are so swollen, its making me gain a lot of weight, and it is making me get sick a lot.

This is staring to get a bit long so ill skip to my questions!
I’m really scared and have a lot of questions but i get so frustrated because every time I ask my doctor or search the question on the internet I NEVER get an answer.My doctor is awful he just rushes me in and out and never answers my questions! All I get are “everyone’s different” or I get yeah this is good to eat from a few websites, and the complete opposite from others.. UGH. anyways here are some:

– im getting really nervous over stupid things, stressed out and panic a lot.. before all this i was such a calm person and nothing bothered me! Is this normal? Should i see someone for help with this or just wait it out?

– Is it OKAY to eat dairy?!
all I eat is dairy.. I LOVE cheese, milk and everything dairy.. is it alright to have this stuff still?

What foods do i avoid?
everywhere I look it lists basically everything you could possibly eat so its really been no help.. I would imagine spicy food right? And im not really sure about what else to avoid (Im still having symptoms btw, I go to the bathroom about 5 times a day only have blood sometimes and my stomach gets an uncomfortable feeling that comes and goes throughout the day. These may seem mild but remember im on 45mg of steroids everyday soo yeah.. )

–Whats remission like? Can i eat anything i want again? (I have been avoid fast food and anything fried too ) am i ever going to only go to the bathroom once or twice a day again?

– Am i going to put on a lot of weight?

– Is green tea good to drink? ( i hate the taste but if it’ll help ill drink it, I’ve heard it could be good for the inflammation, but bad for the diarrhea soo.. any help would be good )

–is coffee okay?

– i know i asked about dairy, but specifically cream.. is ice cream or any cream okay because its much stronger than the regular 2 percent milk!

– how long does this first stage after being diagnosed usually last? I was diagnosed around may 6th, so its been over a month of taking the awful medicine, is there any timeline someone could give me or is it just gunna be a fun little waiting game..?

– If I figure out how to edit this later i’ll add more questions or fix up my story, I’ve been rushing this because I’ve got to get to bed because ive got to get up early for church tomorrow! So for now goodnight and thank you in advance for any information you can help me with :D

Where I’d Like to be in 1 Year:

IN REMISSION, hopefully back to school (i was put on home bound and haven’t been to school for the last 2 months!)I don’t want anything else except for this to just appear as if it were gone.. i know its chronic and won;t just go away but you know, i want to get back to my normal again!

submitted in the Colitis Venting Area

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