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Posted 9/5/2008 10:56 PM (GMT 0)
Hello,

I am a 21 year old female and was just diagnosed with UC after a very painful week in the hospital.. 

I'm still trying to get over the fact that I have a disease.  I'm really scared right now that this will get worse over time.  I am afraid to eat and resume my normal exercise routine-- and especially afraid of having an "accident" in public because of my medication. 

When I left the hospital, they gave me an enema that I have to take nightly (not fun) and some pain meds...  Does anyone else have problems with the UC bothering weak parts in your body?  I had back surgery 3 yrs ago because of a herniated disk and now I feel like I reherniated it-- the UC is causing me so much back pain :(

Does any one have some advice?  I guess I'm looking for a little encouragement.  Right now I"m just nervous and a little annoyed... my parents think that it's no big deal and that I just have to watch my stress and diet..  like not being stressed out as a college senior is easy..   My dad actually said that this is "a lesson learned" and to watch my diet...as if I caused this somehow. 

I really appreciate any comments.

 

Posted 9/5/2008 11:16 PM (GMT 0)
Hamley, first of all let me say, most people don't understand to include family members. All we can do is forgive them and love them. You are at a very sensitive age - an accident is embarrassing at my age (I am 51) but at your age it is even worse. I understnad how your afraid to eat anything. I was just diagnosised 8/25/08 and I am terrified to eat anything new - my motto for me right now is bland is best. The meds aren't fun - in actuality they are disgusting - especially when we have to insert something up our bum! But here is the bright side...............it's not terminal................we're not going to die from this. Yeppers, it's frustrating, but we have to keep moving forward w/ our lives. You are young - I am "mid-life" we still have alot of life to live. Relish in it, enjoy it, because we don't know what tomorrow will bring no matter what age we are.

Keep on keepin on! Your awesome!

Gigi1227

Diagnosised
8/25/08
Canasa
Asacol
Multi Enzyme
Mega Probiotic
Psysillum
Posted 9/6/2008 12:42 AM (GMT 0)
Maybe you could tell your parents about this site. I do not have UC, my boyfriend does. It is so hard to understand how this disease feels and affects a person's life when you are not the one experiencing the symptoms. This site has helped me to: realize the seriousness of the disease and to be more sympathetic and patient when my man doesn't want to/can't leave the house
Posted 9/6/2008 12:55 AM (GMT 0)
It will take a while to wrap your mind around the " I have a lifelong disease " part. Be as healthy as you can,exercise, eat well. The most common advice is to add yogurt and / or probiotics to your diet. I eat anything, but when I'm grumbly or runny I lay off the beans, and try to keep it milder. Some people can't eat a salad, some suffer from potato chips. you will learn your own bugaboos.
Remember, people posting usually have issues at the moment, I haven't posted in a while because I have been too busy hiking. I have an occasional bout with some mild runs, and gut rumbles, And I stick a suppository in my butt every night that I'm glad will be over with in a while, but I'm pretty healthy.
I've never had an accident, but lots here have, and carry spare undies and cleanup kits with them for pieice of mind. The enemas shouldn't cause an accident. And you will be done with them before long. They might be an off again,on again thing, time will tell. Take it one day at a time. You didn't cause this by bad diet or stress. Your folks can't understand it either, and may not be able to admit you have a lifelong issue.
You have friends here, Dear One. We understand your fears.
Come and read the posts, you will learn a lot. Maybe you can get your parents to come read, as well. Come and vent, cry and laugh. Sometimes we get very silly here.
Merry
Posted 9/6/2008 1:03 AM (GMT 0)

Hi, hamley. I'm sorry you have UC but glad you found HealingWell. I know how much it sucks to get this as a college student.

Have you had a colonoscopy yet? They probably gave you an enema because your inflammation is at the end of your colon. As a precaution, I always have a bag in my car with extra clothes, underwear, pads, and paper towels just in case. I also have a lot of back pain b/c of my UC; usually I just use a heating pad. 

Gigi is right--most don't understand what it's like to have UC unless they have it themselves. I've had UC for over a year and my parents still don't get it. In fact, my dad and I just had an argument over my symptoms and whatnot which caused me to cry for more than an hour.

HealingWell is a great support site and feel free to ask more questions.

Posted 9/6/2008 1:13 AM (GMT 0)
Yes yes. I got diagnosed when I was nineteen, it started at the end of my college freshman year. No one understood, I didn't either. My dad made me cry a lot because he blamed it on me and refused to accept that I have and actual disease and that i always will. He always asks why I dont just get surgery everytime I have a flare up but he doesn't realize what that would do to a 22 year old for the rest of her life.

Just recently i was home during a flare and he sat there and watched me cry in pain and get up twenty times and go to the bathroom and heard me up all night long coming and going from the bathroom. He saw me have to go to it 3 times WHILE eating one meal....he soon looked pretty helpless and now i think is starting to accept and be understanding.

not having support is the harderst at the beginning, just stay here, we will be your back bone. I check this thing multiple times a day and it helps to know that you are not alone in this terrible UC controlled world at times
Posted 9/6/2008 2:29 AM (GMT 0)
Hey Hamley! I was diagnosed when I was 25 and had a very hard time trying to explain how I was feeling to family and friends. Giving people you love information about the disease will maybe help them to understand whats going on with you! I was in nursing school when I got diagnosed and I also had to spend a week in the hospital, it sucked so bad and I almost had to drop out of school, I ended up begging professors to take exams late. 3 1/2 years later, Im now a full time RN, live a 'normal' life, still go out and have fun with my friends, etc...And yes, flare-ups can be painful and put your life temporarily on hold, but for me at least, the longer I have had UC, the quicker I can identify a potential flare and stop it in its tracks. I also know what kinds of foods/meds work for me, cause everyone is different. I just joined this site, but it seems like there are a lot of helpful and supportive people here.

FYI-I also have fear of having an accident, although its never actually happened to me...I do keep a change of clothes in my car just in case ;-)
Posted 9/6/2008 3:27 AM (GMT 0)
Wow, I didn't think that I would get this many quick responses...thanks a lot- I really needed the support.

I did have a colonoscopy while I was in the hospital (what a horrible experience!!!) which is why I'm now on the enema. It's just really tough right now since the inflamation is causing me the back pain as well. When will it stop?!

Back to the accidents...I now carry spare undies. After I was released from the hospital, I waited a few hours to go and get my scripts filled. I had an accident right in the middle of Wal-Mart (of all places)! Let me tell you that having that happen on the first day home is NOT reassuring. I am now prepared.

I came home from college for the night and got into an argument with my dad, who thinks that this was a "lesson learned". That eats right through me. I am 5'6, 144 lbs.. always exercise and eat moderately healthy. I actually lost 8 pounds in the past week from my episode. What is going to take to get him to understand?? This is what's really bothering me. I had to tell my mom again that this is for life--I think she is in denial.

Thanks for all your replies, and it feels really comforting to know that others my age have the same problems.

O, what do you usually take for the pain? I was given pain meds but am just curious if that's just because I had this attack... do they give you a stash in case you get another episode soon?

Female- almost 21!
Rowasa
Hyoscyamine
percocet (hopefully just for now)
Posted 9/6/2008 11:25 AM (GMT 0)
Hi and welcome to HW :) Now that you have been diagnosed with Uc, you are going to go thru a whole array of emotions. We call it the stages of grief. There is denial, frustration, anger, hopelessness or despair and finally acceptance. I'm sure there are other stages in there but I can't remember them at the moment :) But just to let you know that we are here for you 24/7 and HW is the greatest support system out there on the net - but I AM a bit biased on that opinion ;)

I have had this a while (diagnosed at 22 and I'm 38 now) and for the longest time, I told no one what I had except family members. You are always going to have one person that is going to be callous and ignorant so the best thing to do is educate them the best you can and if they choose not to listen or learn then try not to let it get to you.

I usually just take Tylonel for pain with a heating pad. I can't tolerate many narcotic pain meds except Darvocet due to severe constipation. But in the past, I would only take them if I absolutely needed it and yes I kept a stash just in case. You can also ask your doc for an anti-spasmodic to help with the cramping.
Posted 9/7/2008 6:30 PM (GMT 0)
Lots of good advice. Mine is, do for yourself what you need to do to give yourself peace. If someone is impatient with you and your needs, move on, give yourself peace.
And, your diet didn't cause this. Eat, just make certain there is a bathroom to use after, or during (to give you peace!).
Posted 9/8/2008 1:08 AM (GMT 0)
I'm 19 and just was diagnosed last July. Like you I had a trip to the ER that scared the life out of me, and also like you I was prescribed enemas and suppositories to start out. Its the most embarrassing thing to have an accident, and it feels like you are absolutely helpless and only just in college. I was learning to cope and get around having people find out about all of my (embarrassing) meds, and didn't think it could get any worse until I had an accident in the college parking lot at my school. People who don't have this disease will never understand just how degrading it can be at times to deal with the symptoms, but that being said I have noticed that ever since having to deal with all this I am a better person. My parents are very supportive (almost to much so), but in your case it is a shame that your parents blame you for it. Its not your fault and there is no way you could have caused this, and for your father to blame you just goes to show that he doesn't yet fully understand whats going on. Its going to be a tough couple of months starting out and trying new medications, but once you find the right ones you will be so much happier. It seems like it takes forever, and the fact that people not living with this don't understand makes it all the worse, but remember you are a much stronger person than they are for going through what it is that we do. Let us know if you have any more questions. :)
Posted 9/8/2008 1:16 AM (GMT 0)
Hi Hamley, im 15 and was diagnosed almost 5 years ago. When going out try to keep your mind of the disease and whether or not you have to go to the bathroom and that stuff. Eating popcorn and spicey food can irritate your colon but it differs from person to person. Take vitamins and iron pills to keep your hemoglobin from going down, try to test out all the medications you can for it.
Posted 9/8/2008 1:47 AM (GMT 0)
Hamley -

I was diagnosed a couple of years ago, and it is pretty scary at first. Having a public accident is one of the most embarassing things, but you live through it, as you've found out already. This forum is a great place because you can find so many people who know can empathize.

I came across a saying in the Crohn's forum that really stuck with me and put things in perspective. A woman was quoting her therapist who said "You see your disease as a rock that is about to hit you, but it is really a small stone that you will always have to carry in your pocket." That really made me think about how I've been dealing with my UC.
Posted 9/8/2008 2:26 AM (GMT 0)
thank you, everyone, for all your comments! I have been on this site at least a few times per day and it is already giving me the support that I need.

:)
Posted 9/8/2008 2:52 AM (GMT 0)
hey hamley.. I was dxed when I was 20. I am now almost 22 and I am just having trouble trying to start a new job. It's such an issue just in training when they expect you to be alert and NOT running to the bathroom. It's enough to make me not want to eat...except that I'm also bad if I don't eat.

So frustrating!!!!!
Posted 9/8/2008 2:57 AM (GMT 0)
I've been trying the no eating thing, and I still end up using the bathroom all the time. Maybe its because I don't trust myself to fart without a toilet under me...lol!
Posted 9/8/2008 7:20 AM (GMT 0)
hamley..welcome to the forum!

What exactly is the extent of your UC..meaning how far up?

What did the doc suggest regarding the enemas...how long, tapering..etc?

quincy
Posted 9/8/2008 4:52 PM (GMT 0)
Hola' all new here, been suffering for about 8 years with UC finally go brave enought and scared enough to have it checked. Had the ole pooper snooper, glad to find out it is not terminal.

Just dopped to say Hola and learn.
Posted 9/8/2008 5:05 PM (GMT 0)
Hi hamley,

Welcome to the forum...

UC is a strange disease because although we all have it, we have found that what works for one person may not work for another. One things for sure though, keep drinking lots of water to prevent dehydration and take a good probiotic (good bacteria for your gut).

Some of us have found that by avoiding sugar (candy/sweets, cakes, cookies, sodas and milk, etc.), we are able to live normal lives. I went from having 10 to 15 bms a day with Remicade, to about 5 a day without Remicade...just by following this simply diet.


NBT
Posted 9/8/2008 5:52 PM (GMT 0)
Hi Everyone

I am a 21 yr old male who was diagnosed with UC back in the fall of 2005 (fall of freshman yr of college!!!!!!!!) Hamley, I totally understand everything you are going through. It is a tough transition and change of pace of lifestyle. When I was first diagnosed, I did not know anything about the disease and did not even think that there was anyone else in the whole world that understood what I was going through. I became depressed and began loosing weight. My first semester of college sucked and my grades reflected that. But I found similar sites like this one and I began communicating my feelings with others and just recently an IBD clinic opened at the hospital I go to and that is a great outlet for my frustrations and problems. My advice to you Hamley, and anyone who was just recently diagnosed is that communication with others is extremely important! I was way too embarrassed to talk about my health and symptoms to anyone and that did not help me at all either.
I just wanted to let you know that things will get better! There will be bumps along the way but if you stay vigilant and have faith in your health things will turn out for the best. Don't ever give up! There are days when I wake up and think "what the ****...this is so stupid and pointless." and I really don't want to take my meds. That's the worst thing ever. Even though your parents don't understand everything that your going through, try using their optimism for your benefit. You rather have them tell you "ahh its not THAT bad..you can handle it!" rather than showing no hope. But its always good to stay grounded and realistic.

So yea, these are just my thoughts about the stuff I have gone through, some of you may or may not agree and I respect that.

Good Luck and Take Care! yeah
Posted 9/8/2008 6:24 PM (GMT 0)

Hi Hamley (and everyone new here!). Sorry you have to find this forum but you are very lucky to have found it. It has been a lifesaver for us.
My daughter was diagnosed October 2006. At first we didn't understand the ramifications of UC and told her school and her job that she probably would be OK and back to everything within 2 weeks! We figured it was like a nasty virus, 2 weeks of drugs to get you all better. Who knew?!

Anyway, if you look back to any of our posts (mine or bratcat), you will know that her dad, brothers, and I (ESPECIALLY ME) are extremely supportive and have learned to be very understanding of this disease.

Having said that, it isn't easy to understand or accept. Especially in the beginning. Parents try to figure out how to make their kids better. There is an underlying guilt that we caused it.

I would definitely encourage your parents to read the threads on this forum. Take them to your appointments. Don't feel guilty. This isn't something that you did to yourself.

Posted 10/1/2008 2:13 PM (GMT 0)
Hi Hamley

I am also 21 female dignosed w/ UC a couple months ago. I have ben doing better, but still scared about having this disease. I found this web site last night and it has halped me sooo much to know that other people feel the same way and that I'm definately NOT ALONE IN THIS.

Just trying to chill out more and not worry about many of the small things has helped me.

Some of the things I'm taking naturle remidies are, flax oil, omega oil, liqid probiotic acidophilus, and alo vera juice.

Just need to take one day @ a time, so true.
Posted 10/2/2008 7:57 PM (GMT 0)
Personally, I wouldn't worry about trying to understand where your dad is coming from. I will be sure to tell my Gastroenterologist that your dad has cracked the cause of Ulcerative Colitis where the entire medical profession has failed all these years (sorry, just my British sense of humour). Seriously, I guess your parents are really worried if they are being honest with themselves, and I would hope your dad is pretty ashamed of that comment.

There are some very good fact sheets available at http://www.nacc.org.uk/content/services/cd.asp "Living with IBD" and "Understanding Colitis and Crohns Disease". Have a look and give a copy to your parents, I think it may help.

Speaking for myself, I know I didn't cause my illness! I'd just spent a year losing over 40lbs in weight, had given up smoking and started going to the gym regularly and finally seeing a Chiropractor (have a number of pins in my back for 38 years, and the lowest 2 verterbrae fused to my tail bone), when Ulcerative Colitis struck. There's a lot of information about Ulcerative Colitis on the internet, and it's been quite reassuring (and sometimes scary) to read about the condition in detail, people's experiences, how to live with the disease etc. I've been diagnosed a month now, and am still coming to terms with it! Yes, the UC does increase the back pain, but I've made the shift to breathing excercises and meditation to cope (works pretty well). Hope your doc (or your own research) has told you to be careful with the painkillers - most anti-inflammatory painkillers are a no-no as they will make your symptoms worse / flare up!

You should feel proud of yourself that you've taken a positive step by finding this website and having a look through the postings and letting some of your frustrations out. I'm not sure I would have had the strength or maturity to do that at your age! Keep coming back to this forum - I've been astonished by the kindness, compassion and genuine warmth that so many people have been able to express in simple words on this site.
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