Community Forum

My name's Jen and I'm 23 years old.  I was diagnosed with UC 8 months ago, although I've had symptoms for almost 2 years now.  I'm getting to a point lately that I can't seem to shake.  I feel guilty, depressed, and lonely.  It's very difficult for me to put my current feelings into words, but I'm going to try.  I'm currently seeing a therapist and going to support group meetings, but I still can't seem to ward off these feelings.  My GI wants to put me on Lexapro to help with the depression and anxiety.  He says he's noticed this last hospitalization, that I'm starting to give up.  I told him, while holding back tears, "I am".  I feel so guilty saying that, knowing that there's people out there worse off than I am.  Yet, I can't help but feel tired of it all.  I'm so tired of all these drugs.  The Lialda, the Hyomax, the 6-MP, the Vanco, the constant tapering of the Prednisone, the constant Remicade infusions.  All the side effects... moon face, hair loss, thinning of my skin, arthritis, back pain, stomach pain, nausea, headaches, fatigue, bone loss, anxiety, stress, etc.... The constant tests... CT scans, Colonoscopies, Endoscopies, Barium X-Rays, Blood tests, Stool samples, etc... How does anyone maintain a positive attitude when they're constantly getting let down?  I've had 3 colonoscopies in the past 8 months.  My most recent (3 weeks ago) was during my 7th hospitalization in the past 8 months, and showed no improvement in my condition.  So am I starting to give up?... Of course I am!  

 Reply posted for jen8585.

Hi Jen

I have UC for 8 years and been thru allot to much to write, my doctor says I have a sever case but I managed to stay out of the hospital. I take 6mp, steroids, asacol etc nothing works but I can deal with everything except not having control of going to the bathroom and also my hair loss.

The hair loss almost made me give up and i am so tired of this condition to sum it up is SUCKS !!!!  But there are people who have worse conditions and worse things. My advice live your life I know its easier said than done but I mean what i do is go out and if I have a problem then i go home, I take Imodium when I have a important event to attend and for the most part it helps. Stay positive you seem like a beautiful person and I'm sure you have allot of poeple around you that care and I to can't stany when my mom tells me to eat better, I want to screem because as you know it don't matter what we eat. Anyway if you want to talk E mail me at AJC425 @AOL.

Anthony

 Reply posted for jen8585.

After reading your post I wanted to say you are not alone and wish you all the best

 Reply posted for OstomyBarbie.

Thank you so much for thinking of me!  I completely agree and understand what you're saying.  It's very difficult for me to verbally ask for help from anyone.  I'm an extremely independent person by nature, and perhaps this disease is my way of learning how to let others help me.  Just as much as I need the love and support of my family, on the days I'm doing well and don't need it, it gets really irritating having my mother ask me repeatedly if I've taken my medicine, or telling me to not eat this or that.  I know she's trying to be helpful, and when I'm extremely sick, I need that help and support, but when I'm not, it makes me feel like a child who's not in control of any aspect of my life.  With that said, I think I give people mixed signals.  Because I'm upset if I don't get the visits and phone calls when I'm in the hospital, but I'm annoyed when everyone is trying to help and treating me like a child when I'm doing better.  It was difficult, but I was able to explain it to my mom.  She seems to understand and tries to catch herself when she's overdoing it. I guess I just need to be a bit more verbal and thorough with my needs and expectations.  Thanks again!

 Reply posted for OstomyBarbie.

It's really great to hear that there are men out there like yours!  You're very lucky to have him!  I was seeing someone when I first was diagnosed, and almost immediately after, he decided I was too much work to be with and that he didn't have the time for a girlfriend, let alone one with a chronic illness.  I'm sure there's a man out there for me, somewhere.  Who will love me regardless, it would just be nice to have kind of support at this point in my life, when I feel I need it the most.  All of my girlfriends are in relationships, or married.  And I feel like, not only am I the only one who's single, but I'm the only one with a chronic illness, who can't work or attend school, or go on vacations or road trips, or eat whatever I want... It seems to make me feel more and more isolated from everyone and everything.  I do have hope that this will pass, and that I will be happy again, I'm just growing so tired up keeping up the hope and faith.  Thank you so much for your words and guidance.  I greatly appreciate it!!

 Reply posted for PyroZack.

Thank you for the tips and understanding.  It nice to hear someone who actually understands and doesn't give me the positive BS that everyone else feeds on.  I know it's good to be positive, and to think positively, but lets be honest here... No one knows what the future holds.  Some may get better, some may not.  And it's nice to hear someone say it's ok for me to be feeling this way.  I tell others the same thing, but have never been told it myself.  I really appreciate your empathy and understanding!  I hope all is well with you!

 Reply posted for msalanui.

Thank you again for your kind words.  I greatly appreciate it!  I'm doing a bit better.  I'm on a new treatment (the nicotine patch) which seems to be working.  Although, I'm just waiting for the next let down.  I also tried my first acupuncture treatment yesterday.  I was really nervous, but the doctor was very comforting and helped me to relax.  There was no pain with the needles, and I actually found it to be quite relaxing and enjoyable.  I will be having treatment every other day for the next few weeks, and as things improve, the treatments will slowly become less, but I already have a little bit of relief from the pain.  So that's definitely some good news.  Again, if you're interested in trying a therapy like this, it definitely can't hurt, and some insurance companies are willing to cover it.  Thanks again and I hope things are going well with you!

 Reply posted for msalanui.

Thank you so much for your response.  The therapy is interesting.  I always feel a little akward at first.  My therapist does not specialize in chronic illness, so I'm considering finding one who does.  Like I said, it's a bit akward initially, getting the conversation started.  But I guess I do feel a bit better when I leave her office.  I will say that it definitely can't hurt.  So if you're considering it, give it a try.  Also some insurance companies will cover it as well, so check with your insurance provider.

 Reply posted for jen8585.

Part 3:

Now, I'm  not saying these things to vent or say that my family really sucks or anything. I just wanted to emphasize how important it is for you to communicate with your friends and family about what you need from them. That this is a long road and you need them to stick around for the duration. I didn't communicate well enough to my family how much I still need them, and instead just act like its fine, I know they're busy and it doesn't hurt at all when they aren't there for me. But it does hurt and I'm working on asking them more for what I need specifically from them. But, its hard for me to ask for help. I know its getting old and they have been through a lot with me and everyone is just tired of it. So ultimately this loooong post was just my rambling way of saying that you have the right to complain and ask for support and you deserve to recieve it and not feel guilty.  

 Reply posted for jen8585.

Part 2:

Just 2 examples: The first night I was admitted to the hospital for the very first time in my life was in 2004, my older brother drove an hour to be by my side so my friend who drove me there could go home and I wouldn't be alone. He stayed by my bedside all night until another family member could take over. I had someone with me all the time. Fast forward 5 years to last month. I called him asking for a ride to a dr.'s appt. because I was feeling really weak, losing a lot of blood and just feeling like I needed someone by my side that day. I was out of my meds and absolutely couldn't reschedule. He said no, that he was on his way out to run some errands and I just needed to suck it up and drive myself. He said I was being co-dependant and manipulative. No compassion, no sympathy, nothing. Example 2: During my first hospital stay my sister drove 3 hours to be by my side. She asked if I needed  or wanted anything and I told her I would really like someone to paint my toenails. I know it sounds silly, but laying in bed staring at my feet all day, you really notice chipping nail polish! I thought that having a pretty color on my toes would just make me feel a little less sick, ya know? So she goes to the store buys several little bottles of nail polish, in various colors, not knowing what color I was in the mood for. Brings in the polish, remover, cotton balls, nail clippers, the whole nine yards. We got permission for her to take me outside in a wheelchair (so the fumes wouldn't bother other patients) And she gave me a pedicure. Last week I was in the hospital for an entire week, a hospital 3 hours away from my home and family, but only about 45 min., from where she lives. She knew I was completely alone there, and not only did she not visit, she didn't even call me once to see how I was.

 Reply posted for jen8585.

part 1:  i was thinking about you today, too and also wanted to check in on you. i have a lot more to share with you, but after reading what the person who posted after me wrote (sorry, i can't recall the name) i feel like he really covered it. i whole-heartedly agree with what he said. the last 5 years of my life have been *** . and the longer it drags on the more i feel like my family and friends are just "over it." their lives are moving forward and mine isn't. i still need all the compassion, support and help that they so freely gave in the begining, but its getting old fast. the visitors, the cards, and the flowers that all came pouring in during my first hospital stay have disappeared. "chronic" illness is so hard to get people to really understand.

 Reply posted for jen8585.

Hi Jen I was just thinking about you today.. How are you doing?

 Reply posted for jen8585.

Part 2!!

What I have learned through years of this is that no matter what, those who haven't gone through, or been daily exposed to, crohnic ailments cannot understand those who have or are going through them.  The only thing you can do is talk personally with either your friends or your family and try to lay out exactly what you need from them, and even then it was a work in progress.  Cripes, it took me all this time just to have friends who ~finally~ understand the situation.  If you start now you can make serious headway in making sure your friends understand as best they can.  For anything else, feel free to email me at any given moment zack-plog@stu.rose.edu

Also, here's the trick I've learned to colonoscopy prep-work.  Go and buy a huge plastic cup of some 18 ounzes with a massive straw in it and fill it with whatever your doctor gave you to drink.  Then, chug as much as you can until you feel like you're going to hurl from having chugged so much.  Next, have a cup of your favored soda, juice, whatever, and get a mouth-full of it.  The key here is ~not to drink it~.  The only purpose is to get the taste out of your mouth.  After that it's just a simple matter of spitting and repeating.  I have it down to enough of a science now that I even have my nintendo ds in there with me as well as music playing.  Some eight times of having a colonoscopy will do that ~_^

 Reply posted for jen8585.

Part 1!!

Well I'm almost 23...close enough.  This all started when I was 15 and I've gone through so many tests and treatments that the medical record for disability was atleast a foot thick, and that was just the bare minimum of facts.

Jen there are so few encouraging words I can give to you right now.  My story isn't exactly one of success either, but a large part of what you've said is what's reflecting in me.  Disability was going to pay for college, but due to unfortunate events, I'm set adrift in a dingy in the middle of a typhoon.  I've actually spent...yeah, some twenty minutes sitting here trying to figure out how to word this post and every single bit of it is coming out like some...lanky puppy chasing after a squirrel.

It doesn't matter if your ailment isn't as bad as someone else's, that doesn't mean that yours doesn't suck.  Don't get mad at yourself for feeling like you want to give up!  Don't get mad at yourself for feeling all that you are!  Am I condoning them?  No.  But berrating yourself will not move you forward.  The only thing that's pushing me forward right now would...well the first is God, the second is friends, and the third is my immediate family. 

 Reply posted for jen8585.

Part 2

I just read the part I typed about the way my boyfriend sees me out loud to him, to see if it was accurate. He actually said to tell you not to worry about that at all. The person you are meant to be with isn't going to run the other way just because you have a bag, temporarily or permanently. Love is blind. The right guy will love you no matter what! And that is coming from someone who's soulmate went from hot, thin, long hair to moon face, balding, ileostomy, stretch marks, mood swings, massive weight gain, and no physical intimacy in over a year due to the pain I'm always in. And he just keeps loving me more every day!

 Reply posted for jen8585.

I really want to say something positive and encouraging here, but to be perfectly honest with you, I can't. I have had Crohn's for 5 years now and your story sounds so similar to mine. In the first few years I was in the hospital ALL the time. None of the drugs seemed to work, and at the time the Dr.'s all thought I had UC. So I finally decided to have surgery after 3 years of suffering and attempt a colon resection. It didn't take and I had an emergency second surgery 2 days later and woke up a month later (yes, I was in a coma for a month) with an ileostomy. I HATE hearing people say "things will get better", and "I know you'll get through this" because they don't know that. They are just empty plattitudes. Things may not get better for a long time. This is a tough disease and I find myself ready to give up fighting it all the time. But, I do want you to know that having an ileostomy will not prevent you from finding love. I am 27 and have a man in my life who doesn't even notice the bag. It's like he's literally unable to see it. He didn't see the hair loss, the steroid weight gain, none of it. He saw my heart, and that was beautiful to him. A bag may sound like a curse right now, but I urge you to consider it if you aren't responding to any other treatments. It WILL change your life in a positive way. I'm not saying its an easy thing to get used to. I cried everytime I had to change it or empty it in the beginning. I couldn't look at myself naked for a long time. I had embarrassing leakage stories... but now its been 2 1/2 years and its just a part of me. There is a lot of support our there for young people with ostomies.

 Reply posted for jen8585.

Hi Jen in some ways I can certainly relate to how you feel I was diag w Crohn's about a yr and half ago but suffered for yrs. I am at the point were I feel like just giving up also and like you feel guilty because there are prople out there a whole lot worse than me I am lucky I have never been in the hosp but have new symptoms popping up and having to do all the testing sucks I have to have a ct scan next week dont know if i am even gonna go. Its hard to keep your chin up people who do not suffer from these diseases sure do not understand. I am completely exhausted all the time but have to get up every moring and go to work  and then go home and take care of family if i dont want to do anything on weekends its whats wrong with you? and talking to people is embarassing I had to get a letter frm my GI dr to give to my employer wow thats was embarassing for sure.Try not to give up and fight this stuff you will find what works for you and will help your disease.How is the therapy going I was thinking about finding one who deals with chronic illness to see if that would help me.This website is great for venting your feelings keep using it and people have good advice and support for you here.

 Reply posted for jen8585.

Cont 2..

 Reply posted for jen8585.

Cont...