Ulcerative Colitis Tips


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Please Excuse My Whining, I’m a Teenager with Colitis

Introduction:

Hi, I’m a 15 year old female with colitis. I was first diagnosed in 2004 in 3rd grade so this year is going to be my 8th year living with colitis.

My Story:

This past year (or two) I have finally understood the seriousness and scariness of colitis. When I was younger I just took the pills, and dealt with the pain. I have had to conquer the mocking voices of middle schoolers (and some high) while on prednizone (sp?) and just basic embarrassment of having colitis not to mention much more. So far I have had 3 hospital stays each about a week and a half long and a total of 7 flare ups; 2 of which were in these past couple months. I have had a total of 10 bags of donated blood transfused through me and countless bags of fluids. As my sophomore year of high school starts I worry more and more about college, being in a college preparatory school its hard, really hard. Staying honor roll through 8th grade was something I took a lot pride in until this past year. The school really bumps up the difficultly freshman year, and between being sick and the difficulty of the school I only achieved Cs. It was a bl ow to my academic self esteem to say the least. My parents (and the school, cant put all blame on them) forced me to get a tutor, who to quite blunt, stinks. Yeah, she does help me do my homework but that’s about it. Honestly, she just convinces my parents that I have a learning problem which is hard to hear when you have another problem, colitis. Its also hard to hear when you have spent your entire school life being told how bright and smart you were. So between working on projects, books, and tests the tutors give me and homework I struggle to be a normal teenage girl. I understand that its in my best interest, but I think part of being a teenager and living with colitis is getting out and having fun when you can. Which sadly I dont get to do a lot of because my mom lives in fear of me over doing my self with my friends and getting sick. My friends are cool with it and help me though tough times but they never really understand what I go through everyday. My family h as been my backbone and support system when it comes to the disease for a long time. There supposed to be right? But, I find even then they dont understand. My grandmother who also had colitis, then colon cancer, and then cell cancer, which she eventually and unfortunately passed away from, was suffering from the disease until I was in 2nd grade (when she died). I always wonder what it would have been like to have a mentor of the sorts for colitis, but alas, I was not so lucky. My sister was really the one I turned to this past year. We have become much closer and I find that although she isnt as mature its nice to vent sometimes. I would have loved to turn to my mom but I find she stresses out about it a lot and I know not purposely makes me feel like their lives would be much easier either a) without me or b) with colitis (which makes sense but still). My dad is pretty important man at his job so he isnt around as much as I would like, and its always a bit easier for girls to talk to girls. Needless to say I guess I am just an average teenage girl living with colitis, and that typing this made me feel a whole lot better. If anyone does happen to read this…well thank you for bearing though my story. Which, by the way, was not checked by my tutor so forgive my grammar.

Medications:

6mp
Lialda
Prednizone
dark yellow/orange round pills?
VSL#3
iron supplement
folic acid

Questions:

1. Are you really not supposed to drink alcohol? Being in high school the temptation and pressure only gets worse…

2. Any tips for coping with abdominal pain?

3. Any tips in general for a teenage girl with colitis?

4. Ideas for the easiest way of explaining colitis to friends?….finding that I used the weirdest explanations

5. Colitis and teenage boys…dare I ask? To tell or not to tell? What would be their reaction?

6. Does the surgery really reduce changes of getting pregnant (for when im older!) ?

Submitted by and Anonymous UC’er in the Venting Area




8 Responses to Please Excuse My Whining, I’m a Teenager with Colitis

  1. Kate August 10, 2011 at 5:06 pm #

    I have found that being a girl in college with colitis is really not much different from being a teenager with colitis. There are still people who tease ecause they don’t understand (even my boss at work makes bathroom jokes -_-). School only gets more difficult, but the great thing is you have a flexible schedule with room for sick days and even catch up days if you feel you need a break. As far as alcohol is concerned, its different to different people, I have pan colitis and as long as I take lialda regularly, I have no serious side effects, just have more gass than usual.

    I understand that some boys are more mature than others, but it is still hard to tell someone you like that you have a colon disease. So it’s all about your comfort level. Do you trust him to take it maturely or would you rather just not have to explain this disgusting problem. I tell everyone, because purging makes me feel less ashamed.

    Venting is a great way to get rid of stress, and we are all here to listen. So anytime you feel left out, because we all do, post how you feel, I am happy to listen and I’m sure the rest of us are too, that’s why we post :)

    Good luck on a new school year! Getting sick sucks, falling behind in school sucks, but it’s not the end of the world and there is a better time waiting just around the bend.

  2. michael August 10, 2011 at 6:01 pm #

    Hey there Anonymous

    I know what you’re going through. I had ulcerative colitis my junior and senior year. I think you should really buy the book “Breaking the Vicious Cycle” by Elaine Gottschall. The book explains the SCD diet, which is the “Specific Carbohydrate Diet” The diet has helped thousands of people around the world. Most people on the diet have a digestive disease like us and a lot of parents are even using the diet for the autistic children. There is only about 60 pages of text and the rest is recipes. You seem like a thoughtful, intelligent girl who is willing to take control of your disease. Doctors can diagnose you, prescribe you medicine and do surgery, but don’t count on them informing you what is best for you. I don’t want to get into a whole discussion about all the jerky GI doctors I’ve seen, but there are a few good doctors out there and there are a lot of A** Hole doctors who are lazy and uneducated. With the internet now, you can research everything you need to know about your disease and what new and different therapy’s are out there. I didn’t have the internet when I was your age. Instead of addressing your questions, I would urge you to check out “Breaking the Vicious Cycle”. Google SCD and check out http://www.pecanbread.com to start with. Elaine addresses a few of your questions. You’re probably on iron supplements because you’re bleeding and may become anemic. The iron supplements may not be a good idea for you. Elaine explains why taking iron supplements are not a good idea if you have ulcerative colitis. Buy the book, lay out a game plan and take control of your life. Don’t let your disease define you. Having this disease and taking control over it will empower you and make you stronger for going through it. Ok, that’s enough preaching for one night.

    Take care of yourself and good luck.

    Michael
    ulcerative colitis 20 years
    SCD for 12 years
    No meds

  3. Jen August 10, 2011 at 6:12 pm #

    God bless you, doll. Being 15 is hard enough. I cannot imagine having to go through this stinking rotten disease at ur age. Its bad enough in ur 20s and 30s. What I can say is that the disease is tough and to get thru it u have to b strong. Im sure u can see how strong you are andu will gain an understandng of life, resilience and what matters in this world way beyond the grasp of others ur age. Try to focus on the positive but when u need to vent do so. People care. Stay strong.

  4. Michelle August 10, 2011 at 6:34 pm #

    So sorry that you are going through this! Being a teenager is hard enough…to have to deal with this too is even more difficult. I feel your pain.

    As for your questions…
    1. I do drink alcohol, but not suppose to. You have to see which ones are better for your system than others. I stear clear of wine bc of the sulfates. But it is better to wait til you are older anyway. I didn’t have my first drink til I was about 19 or 20. If you have been that sick I would definitely stay away from it!

    2.For Pain in general I have been taking ATIVAN. Obviously we can’t take ibuprofen or asprin, and to be honest Tylenol doesn’t really help. I will say that my abdominal pain comes a lot of the time when I am stressed and this drug is just for that. It is not an anti-dpressant, its an anti-anxiety. It helps me focus when I start stressing over things. No real side effects other than in the beginning it can make you a little sleepy. But now I have been taking it every day and I feel like a million bucks…like my head is a little more clear….which in turn takes the pain away. (But I’m also on REMICADE so that helps even more!)

    3. Hang in there, you can do this. Its not the end of the world and it will get better. No matter what anyone says to you, you are a strong young woman and YOU CAN DO THIS!!! Don’t worry so much about others…they just don’t understand. Look at them like they are the ones missing out bc they are. Know that you are not only going through your teenage years like everyone else, you have an awful colon disease….DUDE…YOU ROCK!!! You gotta start telling yourself that. You are stronger than them, they are just jealous.

    4. Just tell them. There is no way to skirt around the situation. And there is NOTHING to be ashamed of. Someone said (and I think it was on this site) if I had cancer I wouldn’t be ashamed or wonder what kind of meds to take …I would just do whatever it took to get better…and its true. I never wanted or thought I would ever be on REMICADE and here I am and I feel great!

    5. Are the teenage boys your true friends? Or are they just acqaintnces (obviously I need a tutor too and I’m 36!) :) I would tell your close friends whats up and tell the others a watered down version of that. Some people just don’t want to hear, so if you go into details they may not get it…so dumb it down for them….no biggie.

    6. I have not had the surgery. I don’t have any advice there. I will say that they wanted to remove my colon, but I told them no and I went on REMICADE. I am not an advocate for ANY drugs, but with the REMICADE doing its thing on my colon and the ATIVAN controlling my stress I feel like myself again!

    I hope that even a fraction of my advice can help. Remember, its just advice. Take it and mold it in to your own life and spit out the stuff you don’t need or want.
    You are going to be fine. You will finish High School, have a boyfriend, go to college….the world is yours.
    We are def. here to listen anytime.
    Good luck, keep us posted.
    Michelle G

  5. Trish August 11, 2011 at 2:38 am #

    It is tough being your age and having had colitis for so long. I would second the advice to get Breaking the Vicious Cycle and go on the SCD, even if you continue to take medication. It has been a godsend for many of us. Paracetamol is the best painkiller for abdominal pain (I think in the US you call it something else, though – begins with a T? Tylenol?). I developed colitis at 17 but I didn’t date until I was nearly 20, so can’t advise here. However, my partners have been sympathetic, and I’ve been married nearly 20 years, so colitis need not get in your way here: frankly, if boys aren’t sympathetic, chuck them anyway – who needs it? Personally I would stay off the booze – I know it’s tempting and difficult but it is like a diabetic being tempted by sugar. If your peers get pissy about it, always drink from a wine glass and have something like red grape juice or fizzy water with a slice of lemon (looks like a gin or vodka and tonic) – you get less hassle that way than if you’re visibly not drinking by having something like orange juice. (One thing you may notice, though, is that other people who ARE drinking are unbearably tedious…) Once you learn to drive, your NOT drinking will become a social asset, as you can be the designated driver, so it might be worth learning to drive as soon as your local laws permit. You’re right that your family and friends can only offer support up to a certain limit – they just don’t know how it FEELS, so feel free to vent here, where people do understand. To keep your energy levels up, try going to bed at 8.00pm on Wednesdays. I took that advice from Elizabeth Hurley of all people, but it is great for recharging your batteries mid-week (I know, because most of my life I’ve worked a 12-14-hour day). And find a yoga and/or meditation class if you can, which will help you to deal with the stress of studying and taking exams while you’re only half-well. Keep your pecker up, as we say in Blighty. ) Trish

  6. Dede Cummings August 11, 2011 at 10:30 am #

    Dear Friend with UC, age 15! That is hard, I imagine…there were teens in my support group (both boys and girls with either UC or Crohn’s, which is what I have). There was this one boy with an external bag who was having a really hard time socially, poor kid. Not easy to go to parties wearing your bag, he said!

    My sympathies….but don’t give up!

    I have a few tips, maybe will help:
    Don’t worry about grammar–write your thoughts and keep a daily “food” journal
    See a therapist who has a masters or PhD in clinical psychology–really helps to talk to an impartial person who is smart! (if too expensive, maybe a trusted school counsellor)
    I am really into natural healing and SCD book, too–I was on prednisone off and on for 3 years–it was hard but now I am drug-free, post-surgery, for Crohn’s. When I used to have abdominal pain, I would put a Castor oil pack on my belly and lie down for 1/2 hour. This was great for easing my pain. I hated the pain meds cause they made me drowsy. You can buy a Castor oil pack at a health food store …. I would soak the cloth with the oil, then put it on my belly with a strip of Saran wrap (the oil is sticky) over that, then a towel…sometimes I used a heating pad. Amazing…put on a meditation tape, or just lie there an meditate and the oil works wonders to draw the inflammation out of the area (it is a pure oil like Vitamin E). Worth a try. Hang in there!

  7. OrdinaryWorldWhereRU August 13, 2011 at 5:50 pm #

    Wow – you are one more strong girl! I didn’t have this disease when I was in high school and still thought high school sucked. I think it sucked for a lot of people so you probably have lots of company there it is just that most people don’t say anything about it. Don’t worry about starting college. Just focus on enjoying today as much as you can. I have found that stressing about what might be only aggravates my symptoms. Keep talking about it, if not with someone you know, come here or write in a journal. Regarding drinking, I learned it really doesn’t do anything for you but it does things to you. Its actual affect on the body is to shut down higher brain functions. Which is why people do stupid s!@# when they drink. For my pain, I take tylenol. When I attempt to explain the disease to people, sometimes they get it, sometimes they don’t. I concentrate more on the fact that it is painful and I bleed internally and then they don’t think it is just about going to the bathroom. As far as boys go, some don’t grow up until they are 42 so keep that in mind if one of them doesn’t react too well. Hang in there because you are a very strong person.

  8. Kristy August 13, 2011 at 9:04 pm #

    I’m was also a teenager with Colitis. I was diagnosed when I was 5 and I am now 21. I too didn’t think Colitis serious or scary until my new doctor brought up the C word, i had absolutely no idea it could turn into Cancer and of course I bawled all the way home. You still have to live your life with UC. My parents pushed me to do things and go out with friends, the last thing they wanted to see was me sitting around on the couch watching tv or being laid up in bed. This is for #4. I have told my close friends about this situation and they are really understand and some other just don’t get it. It really ticks me off that some of them try to get me to drink I’m like “really, I was just in the hospital for 16 days and I want to help myself out in everyway I can”

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