Scared, New to UC – I May Have It

Alexandria H fIntroduction:

I am waiting to see a doctor to get diagnosed for sure. The ER doctor brought it up she said I either have UC or IBS I came searching on the web for answers because I am scared .

Some more about me:

I’m in beauty school I just started actually in suppose to graduate in November I hope this doesn’t stop me

Symptoms:

Very sharp pain in abdomen.

Scared, New to UC – I May Have It

I just went to the Emergency Room yesterday.

I’m 18. I though I was having an appendicitis but when the er doctor checked me out the only thing she came up with is UC or IBS.

She told me to eat healthy and wait to see my doctor to get a confirmed diagnosis. I’ve never been sick, I rarely get the flu and I’m freaking out at the thought that I could have this UC.

That there is no cure freaks me out and I think me being so anxious and scared is making it worse…

How do you cope…and what do you eat because I feel like no matter what I eat it hurts.

How long do stomach flares normally last?

Is it normally to have such bad diarrhea and gas!

And is it normally to be depressed?

Does crying make it worse?

I would ask a doctor but I feel like they wouldn’t know how to even begin to answer my question, I mean there isn’t even a cure.

Did you have to have a Colonoscopy to get a confirmed diagnosis. I’m probably reading to far into this.  I’m just freaking out because this seems scary and hospitals freak me out.

I have really bad anxiety attacks when I go anywhere near one so the thought of having to go to one often is scary.

Is it normal to get ulcerative colitis at 18, there has to be more people out there my age with this right….

How does this affect your relationships?

How does it affect starting a family? How does it affect work?

Sorry if I’m asking too many questions I just need answers… Is there a greater risk for colon cancer? What and how is this surgery preformed? Is there medication to help your stomach? Last question is there some kind of support group I will need one if I end up having this because I’ve been hospitalized for depression before

written by Alexandria H

Adam Scheuer, founder of iHaveUC, diagnosed Oct. 2008

Adam Scheuer, founder of iHaveUC, diagnosed Oct. 2008

Ask Adam:

“Is this supposed to be a support group type thing?”

Alexandria,

What is up, and thank you so much for sharing your story (and all your questions).

So, is this a support group type of thingee????

That’s a good question.  I guess I don’t really think of the iHaveUC site as a “support group”, but I guess it sure can be.  The best type of support groups in my opinion for people with UC are in person informal meet ups.  That said, its often tuff to get those types of things configured and setup unless you take some serious initiative to search out others with UC.  There’s a website I’ve mentioned before on the site called Crohnology, which does a pretty good job of being more of a “social network” type site for IBD’ers.  You can check that out if you like.

But the iHaveUC site has morphed into a place for people to write what they want to get out to the UC world(just like you’ve done).  It’s a place to ask questions.  A place to read reviews of medications. A place to read GI doctor reviews.  And a place to check into from time to time to find out some of the news that hitting the world of UC.

So again, support group?  That’s your call.

You’ve got a ton of questions, and I’m hoping some of the users of the site will be kind enough to share their thoughts to some of them below.  But do me a favor and give a few minutes to check up on some of the surveys that will certainly answer some of your questions.

Here’s two that relate to your questions from your story:

Keep your head up.  You’re 18.  Colitis or not, you’ve got some awesome years ahead of you.  There’s too many other UC’ers your age having fun (even after a UC diagnosis) to think any different.

Adam Scheuer









15 Responses to Scared, New to UC – I May Have It

  1. Jackie with UC
    Jackie March 25, 2014 at 10:56 am #

    I hope it turns out that you dont have UC. The first thing you should do is try your hardest to be calm. Worrying will not make anything better, it literally solves nothing. I feel like stress and anxiety will make it worse. My Crohns and UC reared its ugly head after a super traumatic stressful series of events in 1 week. I feel like if that 1 week never happened I would be healthy today. Breath, pray…do whatever you can to be peaceful. As far as food….take it easy. Dont have anything hard to digest like red meats, fried foods or big portions. Kind of eat like you just got over the flu until you see the doctor. A colonoscapy is actually very easy and not uncomfortable at all suprisingly. If you arent having bleeding and uncontrolable bowels maybe you are ahead of the disease and you can get healthy. Watch the movie “Fat, sick and nearly dead”. UC is different for every one so its hard to give advice. Its kind of a learn as you go experience. Just eat super healthy and be calm. Dont be afraid to talk to family and close friends. I hope you get better young lady!

  2. Katie March 25, 2014 at 11:12 am #

    I was diagnosed with UC when I was 15 years old and am now 36. Try not to get to upset it will only make things worse. Stress in one of the big no no’s with this disease. There isn’t a cure but there are many medications that make it bearable. You can still live a “normal” life, I went to college got married and have had 4 healthy children all while dealing with this disease. Flares make some things a challenge but it also makes you really appreciate the healthy times you will have.

    • TJ March 25, 2014 at 6:27 pm #

      I was diagnosed when I was 17 and am now 36 as well, there are good times and bad times once you figure your body out with these disease stay with what works and the same schedule and diet and to live a stress free life is a must. Although I work in a very stressfull career I must say sticking to a routine does help and make flares not as bad. Stay strong and live life. Good luck !

  3. Cheyenne March 25, 2014 at 11:16 am #

    Ok here are some answers to your questions Alexandria:
    I try to eat very very bland foods when I am flaring. Normally I will have applesauce or a banana for breakfast, lunch will be chicken and veggies, and dinner some kind of soup or a vegetarian dish. I eat as healthy as I can but I know we all slip up from time to time like I do, even during a flare. I cope by resting as much as possible and trying to stay strong. There is great support on Adam’s site,the ccfa website, facebook, and also twitter! Tell your close friends and family about what’s going on. They can help you cope when you are feeling down as well.
    I’m not too sure how long a flare can last, I’m sure it varies person to person and how you respond to the different meds there are. My most recent flare lasted about 3 months before I was put on Prednisone and now I feel much better at the moment.
    To your question about Gas and diahrriah, yes it is normal to have it bad. During my flare I was going 15+ times a day with very painful movements and painful gas as well :(
    Depression seems like a normal reaction to this illness I feel. During my lowest point I would be so depressed because I was unable to go out and it was so hard to get through the day. I would break down and cry sometimes as well because it’s stressful. Telling my friends and family helped a lot because they were there for me when I needed it the most.
    I did have to have a colonoscopy to get diagnosed. They have to view the colon to see what’s going on and what it looks like. The prep for the surgery is the worst part, but in the end when you know what’s going on and can treat it, you will be glad you did it.
    As for the age, I’ve seen stories about kids being diagnosed that are 12 or younger. That’s something that keeps me strong too, if they can get through it being so young I can too (I am 27 btw)
    This affects my relationships a little just with not being able to go out or visit people when I’m feeling bad. Again telling friends and family will help them understand why you can’t always see them. The people that matter the most and love you will completely understand.

    Luckily with my job I am a receptionist with little traffic coming through the business. I’m mostly on phones and doing paperwork. It’s very hard some days running to the bathroom so much but I somehow make it through those bad days. I didn’t go into detail about my illness with my work but they know I have an auto immune illness that causes me a lot of pain and I have to have more doctors visits than the average person.

    Sorry this is so long I wanted to try and answer all of your questions because I know this is a really confusing scary time for you. Please contact me via twitter (vvcheyennevv) if you have any more questions

    • Adam March 25, 2014 at 11:24 am #

      Yay! TO you Cheyenne for being so nice to put some time and effort in to giving her some answers!! way way cool!
      -Adam

  4. Julian March 25, 2014 at 12:41 pm #

    Hello Alexandria,

    I hurt when someone else hurts because IBD… I am the father of a Celiac and UC son who was diagnosed back in May of 2012 (he was 19 and today he is 21).
    He was going through what you are experiencing at this moment. I do hope that UC is not the diagnosis, wait for the final verdict.
    UC is a life changer for the good I wan to say, even though, it is a terrible thing. Since my son was diagnosed we were lost, but, we have dedicated our time (mom and dad) to find a way to heal my son’s disease through the Specific Carbohydrate Diet and some other protocols in conjunction with it.
    For the moment, if you can, eat easy to digest foods, like cooked and peeled carrots, zucchini…home made chicken broth, apple sauce, beef broth. Give your guts a rest while you wait for your final diagnosis.
    UC has no cure if you talk to conventional GIs, but, I can tell you that over the course of almost a year bleeding, I put my son into remission disregarding conventional medicine.
    With the SCD protocol (strict adherence to it – it is tough but better than the drugs that doctors will prescribe) and time you will heal.
    Remove all Genetically Modified foods (GMOs) from your daily diet, read what most people don’t want to acknowledge, the Standard American Diet or SAD and what it does to our guts and to our immune system. Our brain needs to be re-wired so you can start eating nutritious foods. Doctors will tell you that diet has nothing to do with it…but it does have everything to do with it.
    Your age 18 does not have to do anything with it. In these two years of getting involved with IBD diseases I have seen 6 y/o kids already suffering with Chron’s .
    A colonoscopy will will probably be good to be sure of the diagnostic. In my son’s case I had to confront my family doc because he wanted just to put him with anti-biotics and I wanted a colonoscopy which proved me right and proved the doc wrong…he was guessing it was IBS. My son was bleeding for a long time and that should have told him some more clues…today, I don’t see any conventional type doctors.
    My wife and I are here to help people with IBD diseases for free, we just want to let people to know that there are other alternatives.
    When you ask about flares…flares can last for a long time, depending on your lifestyle, diet, stress etc… the more stress you are the longer the flare, and that is one thing with my son, the stress of College got him plus the junk he was eating.
    Diarrhea and gas are common symptoms in these cases, also depression and I don’t know if crying makes it worse, I actually cry to relieve stress (but, that is only me talking).
    The risk of getting cancer…conventional medicine scare people like that, but, when you eat and take care of your body like it should be, the chances of getting cancer drop. I know that my son today is in better shape than many “healthy” people who might be even be undiagnosed, bear in mind that there are lots of people who might look healthy to you but, at any point of our lives we will step into disease, so, that is why we need to be aware when our bodies are talking to us and we just disregard it.
    The way it affects your relation ship and families: hopefully, your family will support you, because one will need it. My son, at his young age would have never done it without us (mom and dad) getting involved and taking matters into our own hands, and regarding work: my son was having a tough time, but he managed to pull through with lots of decision and believing that the SCD would do the job.
    If you need me or my wife, Alexandria, we are here to help. We will point you in the right direction so you can get stronger.
    There is a very sophisticated on-line support group where I am actively participating and helping others with IBD. So, if you need us, write me that it is my duty to help! And this goes for everyone else who read my posts.

    You may want to search when I first posted on Adam’s IhaveUC, I was desperate and crying like a baby…but Adam’s web site was the beginning of my journey and I’ll write here to say thanks to Adam, it was the first web site that appeared when I searched.

    Don’t ever hesitate to write me if you need me (when I say me is really my wife and I). We were also helped (and continue to be helped by others who know more than we do).

    Take care Alexandria and keep us posted!

    Julian Viso
    Father of a Celiac and UC son

    • Stacey March 28, 2014 at 4:20 pm #

      What fabulous and encouraging info you wrote here!
      Thank you so very much!

  5. Dominique March 25, 2014 at 1:37 pm #

    Hi Alexandria,

    Just wanted to fill you in on a bit of my story to try and lift your spirits. First don’t freak out too much as you may not even have it and if you do, it’s not the end of the world. I was diagnosed when I was 15 and felt the exact same way as you. I had always wanted to do a lot of travel and felt very depressed that it would no longer be possible. But i’m now 24 and have travelled a lot! Plus I moved halfway around the world to try living in a new city for a few years. I have a great job in a management position, go out partying most weekends and go on a few vacations a year. I’m not going to lie, there are times when it can be very tough, frustrating and depressing but you will learn ways to cope. Different things work for different people but overtime you will also learn which foods you need to avoid and foods, probiotics, etc., that can help.

    Also it is a good idea to talk to your friends about it. When I was younger I kept it a secret from my friends for years as I was embarrassed. This made it even more stressful having to come up with excuses all the time. When I got older I finally started telling people and found out that a lot of people have stomach problems. While they not be as bad they can all relate to some extend. It really takes the pressure off to just be able to talk about it honestly with your friends.

    Anyways I hope this has cheered you up a bit, while UC will change your life it won’t ruin it.

  6. Chrissie Hastings March 25, 2014 at 2:17 pm #

    Dear Alexandria, there is a new study starting in Australia for chrones and uc very soon to do with fecal transplant, and there is other studies all the time. My lovely daughter was diagnosed with uc when she was 12, she is now 21 and in her final year of an arts degree, though her life at times has been challenging It is safe to say that uc has given her a will of iron and a determination that is a positive in her life. The SCD diet has been wonderful and now that she is older she understands her triggers and stress is a huge one, so try notto stress !!!! There is life after a UC diagnoses, all your worries are quite normal so find yourself a good GI that you can be honest with. Adams web site was a great find for me as a mum and pointed us in a more positive direction. So wait and see what happens, day by day. Kind regards

  7. Sebastian March 25, 2014 at 3:31 pm #

    Hi Alexandria!

    I hope that your diagnosis will be as good as possible.
    There are a lot of young ppl with UC. I was diagnosed in July 2008, when I was 15 yr. After diagnosis I felt like my world was falling down – I lost my first love (sport :D), I got depressed and was afraid of another people.
    There is nothing wrong about being scared. You can still enjoy your life, but in different way. You must change your lifestyle – diet, less stress, more resting.

    About your questions…

    Flares last as long as you are not doing anything with it. You should start diet and try medications(listen to your doc). Unfortunately, many of medications don’t work(ex. steroids are the only medc that helps me, but only in short term).

    Fortunetly, there are many many ways of treating UC that are not connected with medications (almost 6 years and I am still trying new ways of “healing”).

    Diet… from my own experience – raw food, gluten, milk and cheese are causing more pain.

    Yes, diarrhea and gases are completely normal :)

    Yes, depression is also normal. Especially in the beggining of UC. After some time you’ll learn your life again and depression will go away. When I was diagnosed I isolated myself from my friends, but now I am very happy and I must admit that thanks to UC I’ve changed for better!

    Nope, crying is fine until you cry all the time. It is bad to keep your feeling inside.

    Colonoscopy. I am sorry to say that – if you have UC, then colonoscopy is a must. Earlier or later. I can remember talk with my dad after first colonoscopy. He said that I’ll never have to do it again… I am 6 colonoscopies older now. :) Oh, and hospitals freaks me out too! Even after 3 hospitalizations.

    Yeah, anxiety is great problem. That is the thing I couldn’t get rid off. The biggest problem I have are university exams. I am scared that I’ll have to run to toilet during them(well, that actually happened 2 times).

    It is not normal to get UC at any age in my opinion :( but if you want to talk to somebody then internet is main option. It is hard to find people, who can totally understand what you feel(in my case it is my best friend and mum).

    Relationships. I think that after some time your family and friends will understand what is going on about UC and It won’t change their attitude towards you. If it is about new relationships – you must be strong! Really. Some people will just ignore your illness, but not everyone. I have one very bad experience with my ex-girlfriend… she left me after 3 years(we first met when I was already diagnosed) saying that she can’t live with my illness. Very sad words, but I would say that it was only excuse :P

    I can’t say much about starting family and work. I can tell you that it is possible to study just like everybody :)

    Colon cancer? I have never heard of anybody having cancer because of UC (even if my docs say that it is some serious risk… but I find them very ignorant).

    Don’t worry about surgery!!! There is many different ways of treating UC. Surgery is the last option.

    If you want some medicaments to help your stomach then you have to see doctor first. I would suggest you to try taking Colostrum, L-glutamine, vitamine E – these are helping me a lot. Some probiotics could be useful as well.

    Support group? I am sure that most of people in our group are ready to help you as much as possible. If you want to talk to somebody then… I can give you my email, skype, facebook or whatever :)

    Take care and don’t worry too much!

    Sebastian Winiarski

    P.S Sorry for my poor English and language mistakes.

  8. Savanna Rae VanDongen March 26, 2014 at 5:12 am #

    Hi, I got diagnosed when I was 17 just last October. I’m fairly new to it and I’m now 18.. It is normal to have gas and bad diarrhea. For now since you aren’t sure if it is or not, I’d definitely avoid dairy products and I would eat extremely health but also extremely bland, like no lettuce of vegetables that aren’t cooked, just because it could do more damage than good. If you want to talk to me more you can find me on Facebook at Savanna Rae VanDongen, it would be very nice to be able to talk to someone who is the same age as I am! I’m really hoping it isn’t UC though.

  9. Luis March 26, 2014 at 10:15 am #

    Hi Alexandria,

    I was diagnosed 12 years ago. I was 26. I felt everything you are feeling right now. I think depression is a natural phase in reaction to being told you have or might have a disease. Uc is not the end of the world….. It will be an adjustment to your lifestyle. Until you know for sure try and eat smaller portions of healthier blander foods. Listen to your gut, if it doesn’t like what you eat it will tell you.

    I was diagnosed with a mild to moderate case of uc. Put on asacol…which alone didn’t help too much, then steroids which would do the trick for a while. For 6 yrs I’d get better then flare up….sometimes i’d be good for weeks, months, one time a full year with no setbacks. Then one day it was gone. 5 years…no meds, no gi visits, no symptons at all. Just like that, gone. For 5 yrs I’ve eaten whatever I wanted, 2 weeks ago if someone asked me if I had any diseases my honest first reaction would’ve been “No”. Then a week ago I had my first flare up….and it all came crashing back. My wife and I are convinced that my uc trigger is stress. That’s the only thing that changed…. Bad case of physical and mental stress. My body got run down on a week of horrible sleep. 4 hrs was the most sleep I had in any one day over 5 days. Worked full shifts, watched my kids, even exercised. I powered through until my body couldn’t take it anymore.

    So Alexandria what I’m trying to say is that this disease is different for everyone. The severity of uc is different for everyone. I hope your diagnosis goes well, but if it is uc you will be ok. There will be challenges ahead of you but you’ll learn more about yourself and your body through those challenges. Personally I think stress plays a huge part in flares so try and find a way to deal with stress. Exercise works for me.

    Keep coming back here , sites like this weren’t around when I was diagnosed. It’s a great place to vent, ask questions or just read other peoples experiences. This is my first interaction with anyone that has uc. 12-13 yrs I’ve had this disease and the only people I’ve interacted with are doctors and my wife. This site is great

  10. Teanna
    Teanna April 6, 2014 at 10:16 am #

    Hey Alexandria, sorry to hear about all the symptoms and the visit to the hospital. I see you’ve got some wonderful responses to your post! I just wanted to let you know that I was diagnosed with UC at 13 and I’m now 23. And the best advice I can give someone is to be open about their disease and seek support.

    I know this disease isn’t fun or easy for anyone, but I had a really tough time in my teen years. You’re a young, beautiful girl and I know the symptoms can sometimes be embarrassing. But when I was first diagnosed I wouldn’t tell anyone what was happening and I really withdrew from all my friends because I was so embarrassed about diarrhea and accidents and gas.. don’t do that! Just be honest, tell them what’s going on, make jokes if you have to, but lean on friends and family for support and it will make it so much easier!

    Good luck with everything and keep us posted on your diagnosis!

  11. Bryan C
    Bryan April 12, 2014 at 6:55 am #

    HEY ALEXANDRIA UC IS A TOUGH THING TO DEAL WITH YES IT IS NORMAL TO FEEL DEPRESSED AND HAVE ANXIETY. IF YOU HAVE A FLARE YOUR GI WILL PUT YOU IN THE HOSPITAL AND GIVE YOU MEDS THROUGH IV PROBABLY STEROIDS, ANITBIOTICS, AND PAIN MEDS UNTIL YOU GET UNDER CONTROL. AS FAR AS EATING IT DEPENDS ON THE PERSON TRY THE BRAT DIET RICE APPLES SAUCE AND BROTH. THERE ARE PLENTY OF PEOPLE HERE THAT CAN HELP TALK YOU THROUGH ALL THIS YOU NEED SUPPORT AND PEOPLE THAT UNDERSTAND HAVE YOUR FAMILY GO WITH YOU TO YOUR APPOINTMENTS. I HAVE HAD UC SINCE I WAS 20 YEARS OLD IM NOW 35. AFTER BEING ON EVERY MED THEY DIDNT WORK ANYMORE AND HAD MY COLON REMOVED BACK IN SEPTEMBER AND THEN A SECOND SURGERY NEW YEARS EVE GOT SOMETHING CALLED A J POUCH AND I HAVE TO GET
    MY LAST SUGERY WEAR THEY REVERSE IT SO I WONT NEED THIS COLOSTEMY BAG ANYMORE I FEEL GREAT NO MORE MEDS NO MORE PAIN. I WOULDNT WORRY BOUT THAT YOU PROBABLY ARE NOT TO THAT POINT AND YOU WILL KNOW WHEN ITS TIME FOR THAT. IF YOU HAVE ANY QUESTIONS YOU CAN SHOOT ME AN EMAIL BRCOOK2323@YAHOO.COM OR ADAM WILL ANSWER ANY QUESTIONS HES A GREAT GUY.

    GOOD LUCK
    BRYAN

  12. Regan April 18, 2014 at 2:14 pm #

    Hi Alexandria. I was diagnosed with UC just after my 21st birthday. I’m 24 now. I know what you’re going through. Based on my experiences I’d like to tell you to try your best not to stress about it too much. I have never dealt with stress well and when I was diagnosed I pretty much freaked out and didn’t know what to do. I didn’t know anyone I could relate to. Stressing like this makes my flares worse. So try doing things like meditation, yoga, tai chi, running, or really anything that makes you feel better and more at peace. I talked to a therapist once and while I felt really positive and so much more in control afterward I haven’t done it since because it’s not cheap.

    The next thing I want to tell you is to slap your doctors around a bit. I went to 9 different doctors in the span of a month all wanting to take blood tests and to send me to specialists (who didn’t help by the way) before I found a doctor who immediately sent me to a hospital where I was diagnosed within three days. Don’t let your doctors give you the run around like I did. You’ll only get worse the longer it takes to diagnose and are able to help you properly.

    Don’t settle on a doctor. I’m serious about this one. If you get a doctor who won’t listen to your concerns and ideas with an open mind, then you don’t want that doctor and they won’t be much help to you. I had a doctor yell at me once because I asked about the benefits of probiotics and he said “if there was a cure like that then we’d all be doing it. Don’t be ridiculous.” So make sure your doctor really listens to you.

    I have had two colonoscopies. The first one I was too sick in the hospital to be scared at the time. I was a little nervous for my second one and I’ll tell you that it’s really nothing to worry about. The worst part of a colonoscopy is prepping for it the day before. An anesthesiologist will give you some drug that makes you not even remember (I fell asleep both times too.) You won’t feel it. You won’t remember it. And you can go eat right after you’re done. You’ll want to.

    As far as relationships go, make sure you talk to your family and friends about what you’re going through.. even poopy stuff. It’s hard on them as well and even if they can’t physically understand what you’re going through it will give you and them a little more piece of mind because they can have an idea. Dating on the other hand is a bit more difficult. If you tell someone about it and they aren’t genuine in their concern, you don’t want ‘em. Find yourself someone who is willing to take this journey with you.

    Depending on where you are there is probably a support group. Check out the CCFA website for more information on that. We even used to have a Meetup in my city for people with crohns and colitis where we went bowling and had bbqs and stuff. There are groups out there. Keep an eye out for them.

    I’d really like to talk to you one on one some since we are close in age and I haven’t been diagnosed for long. I think we could learn from each other. My email is regancasper@yahoo.com

    Take comfort that you are not alone in this.

    Regan

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No matter what, colitis flares don't last forever, don't forget it:)