HealingWell
Search Close Search
☰

Just diagnosed! Not taking it well

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/22/2011 8:31 PM (GMT 0)
Hi there im 19 yo Female and just been diagnosed with Ulcerative Colitis.

I was in hospital for a week and now that i am home all i seem to do is cry and worry that i am just going to fall in to the same habbits and the pain is going to happen all over again.

Is there any other young females with this? How did you cope with it?

I am not one for drinking and rarely go out, but how does drinking alcohol affect this disease?

At the moment i still bleed when my bowels move and i still sometimes have abdo pain. It's not as bad as it was before i was diagnosed, infact far from it. But with the medication does this go away at all, cause i you know it can be embarassing when going out in public and attending concerts etc?

Any reply would be extremley greatful as i am very emotional at the moment and not sure i can go on without being in the hospital.

Posted 6/22/2011 8:52 PM (GMT 0)
Sammi,

Hang in. If you are actually physically better now, then you will likely be OK. emotionally you are at a scary crossroads as anyone would be. Leaving the care of the hospital that has gotten you better is scary no matter what the issue was or still is. you are so young and having just been diagnosed with this is understandably tough. I have a permanent ileostomy due to a serious gut injury suffered 4 years ago. So far I'm OK but I understand the worrying about what if's. As my issue is from an injury and not disease, I cannot comment on the UC part of this. Others will be along soon who can offer info on the UC issues. Just wanted to let you know you are in my thoughts. Rosemary
Posted 6/22/2011 9:12 PM (GMT 0)
Sammi,

Hopefully my experience will put you at ease a bit.  I am 26 and have had colitis since I was 10.  I have graduated from college and am now in law school.  I'm engaged to a great guy who is very understanding about this illness. I think that your mind set has a big effect on this illness.  Colitis will only hold you back if you let it.  I've been on lots of drugs but most of the time I feel great.  I am really active and always have been.  I definately have weeks where I don't feel great but I can always turn it around by focusing on the future.  I drank a lot through college and still have a few on weekends . . . If I don't feel good though I don't drink.  Colitis is about listening to your body and learning from it.  If I am in a flare I'm not afraid to take predisone and get it over with.  (many people don't like it but if you don't take it often its great ) Learn what meds work well for you and what foods agree with you.  I actually think that I am way more healthy that I would be with out colitis because I am forced to think about my health.  I learned almost everything I know about UC from this site so go back and read the posts, I think I've literally read everyone.  The best thing I've tried so far is taking lots of metamucil.  I am definatley a worry wart but stress does nothing good for UC.  I know its scary at first but you will learn to adapt your life to it.  If you are going on vacation pack some imodium and have fun.  I have so far not done something I wanted because of UC.  It will make you  a stronger person.  :)

Posted 6/23/2011 1:33 AM (GMT 0)
Hey Sammi

I'm a 19 year old female as well and just got out a week and a half hospital stay a few days ago. I just found out I have UC, too. Looks like we're in the same boat. I'm really worried about starting my sophomore year of college this fall, especially because I go to school out of state. Are you just as worried as I am about explaining all the pills to your roommates? I'm also worried about the parties. Even if I don't drink or smoke, I'm worried about second hand smoke and how it may react with all the meds.

You're not alone. I'm right there with ya!
Posted 6/23/2011 2:12 AM (GMT 0)
Hi Sammi,

I was diagnosed at 18 and I totally understand all the worries, fears, and frustrations that comes with being a young woman with UC. I guess I'd have 2 main things to say:

1) Educate yourself. It sounds like a cliche, but when it comes to this stuff, knowledge really is power. There are a lot of options out there treatment wise and you don't have to just blindly listen to your GI. I wish I had known this earlier on in my disease. If you're not comfortable with your treatment, seek other options! Learn about various diets and supplements and other approaches beyond the mainstream medicine stuff. Find what works for you. It takes A LOT of energy and time, but I think in a way we get a heads up on things by being diagnosed so young and being in generally overall good health.

2) Your friends can only be supportive and understanding if they have some understanding of what's going on with you. It's really easy, especially in college, to just write off what's going on and not let anyone know that you have this disease. I certainly did that often. But when things started to decline for me, I learned that I really did need that support--it's scary to think you might not get it (and you might not from everyone) but the first step is to open up and let your friends know what's going on. As girls we're not supposed to make poop jokes or stuff like that, but humor is really a great tool at getting people to start to understand what's going on. Maybe just start with one person, and build up that trust. If you're around the right people, a lot of your worries (going to places where you can't eat the food, not drinking at parties, etc) won't be such a big deal. In fact, their kindness and caring may really surprise you--I just had 5 college friends walk with me in the CCFA Take Steps walk. It was amazing.

When it comes to drinking (and you'll have to figure this out for yourself) I go through phases. Some months I drink socially, but I go through longer periods where I don't. The thing that surprised me at first: people don't care. If you just say "Oh, I can't drink right now, just some medicine I'm on" or "Oh, I can't drink...just this stomach thing I have" a lot of people won't give it a second thought. It's really about getting comfortable enough with yourself to go out to bars and concerts and parties and not drink, if that's what you decide to do. And honestly, you can still have fun! Trust me.

Lastly, you've come to the right place. I've been here off and on for the past 4 years and it really is a helpful and wonderful community. Best of luck!
Posted 6/23/2011 6:40 AM (GMT 0)
Hey Sammi,

I'm 21 now, but I was diagnosed when I was 11. I've been extremely fortunate as to have had no flares in 9 years.

I know it's a lot easier said than done, but try your hardest not to worry or get yourself too worked up. Stress is a contributing factor to flares and bad stress is not good for your body anyway. Anxiety and nervousness still mess me up sometimes. The biggest thing is to keep your energy level up, avoid the foods on the not allowed to eat list as well as things you know your body will react badly to, and take the medicine (or whatever) your GI has prescribed. If it's not helping don't be afraid to ask your doctor to try something else.

As to alcohol: First of all, you're underage so you really shouldn't be drinking. I know it's not realistic, but as a responsible adult I feel like I need to put that out there. Second, if you are currently experiencing pain of any kind I would avoid it. Third, alcohol and drugs don't usually mix especially if you are taking a high dosage or a powerful drug. Read the label or instructions to see what your prescriptions say if you take anything. Fourth, I'm not a drinker/partier much myself but since I turned 21 I've had beers, frozen margaritas, & mimosas on a few occasions (always in very limited quantities and consumed while eating and drinking water) and have had no ill effects. Everyone is different though and that does not mean I am condoning underage drinking (as it is illegal), but if you do (now or in the future) then you definitely need to educate yourself about possible side effects, etc.

Lastly, this is a great place to find support. People are really friendly, honest, and open with each other. We've all been there at one time or another, so just know that you are not alone. Anything you ask someone will have an answer or recommendation to share with you.

To the other girl who just got diagnosed:
When I started college I was, rather sillily, worried that my roommates (I lived with 3 other girls) would think I was popping pills or something. However, we all had our own rooms so I didn't even have to worry or feel awkward about them seeing me take 13 pills every day. But whenever they asked me why I didn't drink I just said "I don't drnk because I take medicine" which was easier then just saying "I don't drink" because then I didn't get the 20 questions that usually followed. I learned that people either really don't care or they will understand if you take the time to explain the whys.

In classes sit close to the aisles and up front (or back if the room has rear exits if you prefer) so if you ever need to leave it is easier and you'll call less attention to yourself. Bring a water bottle. I always have one because my mouth gets dry a lot. If you feel comfortable about it or it's a small class size then speak to your profs or TAs about your issue and why you may have to use the restroom in the middle of class.

Hope that helps.
Posted 6/23/2011 11:08 AM (GMT 0)
Thanks everyone so much for the advice it really has put my mind to rest, i think it was just the initial fear of coming out of the hospital.


Sorry UChick maybe i should have mentioned i live in Scotland and 18 is the legal age for drinking, sorry should have mentioned it, never realised this is mostly an American site :)

Again thanks so much everyone for the extremely helpful advice :) It is much appreciated :D
Posted 6/23/2011 4:47 PM (GMT 0)
Oh, well, then you're good to go. LOL! Thanks for letting me know. I didn't even think to consider you weren't from the US. I know most other teens don't share my view of underage drinking here in the States, but I think it's an important issue.

Seriously though, if you feel pain or your body isn't 100% then I would still stay away from it.

Also, coming out of the hospital after a diagnosis is somewhat daunting. Just remember your doctor is only a phone call away. Once you get back into a routine at home I think your worry will ease a bunch.
Posted 6/24/2011 12:15 AM (GMT 0)
I was just recently diagnosed too, I would like to think I'm young (29 ;), and I have had a really hard time with it as well. I also have Celiac Disease so it's like a double whammy, I am okay one minute and then bawling my eyes out the next. The thing is, it's not even that I'm sad about it, it's that I'm MAD about it, I feel like I've already gone through so much why do I have this on top of it? But then I remind myself that it's gotta happen to someone, so why not me? Hang in there, we'll get there eventually :) You can email me @ [email protected] if you need someone to talk/listen to.
Posted 6/24/2011 4:34 AM (GMT 0)
I am 29 as well and was diagnosed tuesday with uc. The doctor actually said he had never seen anything like it and was shocked that i was walking around and functioning/working. He told me the goal is to keep me out of the hospital and to avoid surgery. I have been a mess this week as I was not expecting to hear news like that. In terms of drinking, i live in a big city and love to go out. I go out every weekend and love my wine with the ladies or nice dinners with cocktails with the boyfriend. I think the lifestyle change right now is the hardest to cope with. In terms of pain, I was put on a very high dosage of prednisone which I am hoping to only be on a short while. I have to say though, this is a miracle drug. I take 8 pills a day. This is my second day taking them and I feel almost 100%. I know that is deceiving as I am still really sick. It makes it almost harder to cope knowing I feel fine but I have to be aware of this going on. I am just trying to be positive that the shock of the lifestyle change and discomfort will go away and for the most part, I can lead a similar day to day life as I was leading.

For people who have had this for years and do enjoy the same kinds of things or have the same kinds of concerns as me, do you have any advice or input. Does anyone have experience with drinking while on prednisone? In terms of flare ups, can you identify how to avoid them?
Posted 6/24/2011 5:16 AM (GMT 0)
Posty626 -

Here's my how to avoid flares 101:
- don't drink milk or eat too much dairy products until you are pain free
- avoid red drinks like fruit punch, Big Red type sodas, red Gatorade etc.
- no popcorn, peelings from fruit, sesame seeds, spicy foods
- keep up your appetite. Dehydration = BAD. It landed me in the hospital twice when I was diagnosed. (with prednisone that most likely won't be a problem so be careful about eating too much)
- therefore, try to excercise while on prednisone like walking as weight gain is common
- take a vitamin - they don't hurt (ask your doctor first)
- reduce your stress level (check out my two quotes in my Signature - they always help me when I get a case of the "why me's" or find a saying or quote that relates to you and look at it everyday until those negative thoughts go away)
- write in a journal. First write down all of the bad and get it out of your system. Burn that part if you want. Then keep things as positive as you can. Write down everything you need to know about this disease and what you can do to help yourself get healthy and reach remission.
- Most importantly remember that UC is a mind over matter illness. Don't let this disease dramatically alter your life.

These are just suggestions and things that I have done. You'll find the right combination that works for you.

Good luck
Posted 6/24/2011 6:00 PM (GMT 0)
Sammi, im a 22 year old female and i was diagnosed with UC when i was 15 it wasnt easy i wont lie to you but just stay positive and do what the doctors tell you. After 7 years of having it i finally had to get the surgery so i now have a ostomy bag ive only had it for 3 weeks and ive been emotional i know what your going thru sometimes its okay to just cry and feel sorry for yourself but dont give up , if you ever need anyone to talk to im here i totally know what your going thru, be strong and keep your head up.
Posted 6/24/2011 6:15 PM (GMT 0)
^Can you not get the j-pouch? or was it because it was emergency surgery?

^^^And good advice on what UCHICK says most of it will apply in your case. Alough some people are different and can tollerate certain things, and other foods some being complete random may not go well. I get on fine with spicy food, but find vegetables irritate me causing v v bad gas and stomach discomfort, so does to much wheat.
Posted 6/25/2011 2:07 AM (GMT 0)
it was emergency surgery

tank89 said...
^Can you not get the j-pouch? or was it because it was emergency surgery?

^^^And good advice on what UCHICK says most of it will apply in your case. Alough some people are different and can tollerate certain things, and other foods some being complete random may not go well. I get on fine with spicy food, but find vegetables irritate me causing v v bad gas and stomach discomfort, so does to much wheat.

Posted 6/25/2011 10:33 PM (GMT 0)

Gribby88 said...
it was emergency surgery

tank89 said...
^Can you not get the j-pouch? or was it because it was emergency surgery?

^^^And good advice on what UCHICK says most of it will apply in your case. Alough some people are different and can tollerate certain things, and other foods some being complete random may not go well. I get on fine with spicy food, but find vegetables irritate me causing v v bad gas and stomach discomfort, so does to much wheat.

Can you not have it reversed say 6 months down the line tho to j-pouch surgery?
Im trying to avoid emergency surgery so think im going to try take the plunge and go on waiting list for surgery whilst im in remission.
✚ New Topic ✚ Reply