I have had it

[Wishes Count]

I am beyond frustrated, annoyed, angry at my CD! I have been in remission once in the last 7 years. That's one good year out of the last 7! What kind of life is that?

I've been on everything, my current medications include lialda, 6mp, allopurniol, predisone, humira. I have been on predisone since 2008, it made me fat, bitchy, I have a puffy face (WHICH OLD PEOPLE LOVE TO COMMENT ON HOW CUTE IT IS! UGH) it gave me high blood pressure so lets throw in medication for that too. My counter looks like a pharmacy.

I'm supposedly seeing one of the best doctors in Pa, at the University of Pennsylvania hospital, but I feel like I'm not getting anywhere. Here I am, at the end of the semester, with tons of work to do, and I have such terrible symptoms that I can't leave my apartment. I have gone to one class a day all week, and that is only because I had to prioritize which was the most important (like having a test or project due)

I'm so frustrated. How am I supposed to have a real job when I graduate? My mother puts so much pressure on me about finding a real job, and getting married. NO ONE WANTS TO DATE SOMEONE WHO IS SICK ALL THE TIME!

I feel like I got robbed. I feel like I won't get to do all the things I want to do because my CD gets in the way. For example we went on a cruise this summer. I wanted to go cave tubing in Belize, well first you had drive there for 2 hours, then you had to climb through the hot jungle. Forget it, there is no way I could have done that, eventhough lots of normal people said it was THE thing to do there. I'll probably never be able to have children because I will never be well enough. It's not fair. I feel like I've done everything I was supposed to, I haven't missed a dose of medication in years and yet here I am oo:

 

[Clash]

Hey, Wishes Count, I just wanted to send some hugs and support your way! I am so sorry that you are struggling right now. My oldest daughter, my non-IBDer, is in college too and I'm also guilty of harping on the "Getting a good job" "Settling down" issue. She doesn't take it that well either and she is not having to fight off this horrendous disease. Us Moms tend to get one track-minded on what we think will bring our children the most happiness and when Moms set a goal...watch out.

It sounds like you are being a true warrior against your illness and I commend you for that. There aren't many people that can deal with the struggles of CD and soldier on at college, through classes, college life, etc. I hope my teenage son, the IBD'er in the fam, can be the soldier you seem to be when he enters college.

I hope you are able to find some relief and remission soon and then long may it last. Oh and sometimes my daughter just has to say "Back off, Mom." I don't particularly enjoy the chastising but sometimes us Moms need it!

 

[UnXmas]

I feel like I've lost a lot of life to being ill. Some people have chronic illness but are able to live along side of it. Some illnesses just don't allow for that kind of normality. The only solution I found was to stop comparing myself with other people - ill or not.

I've had other things done to me that make me angry because I feel I haven't had a fair chance at having a normal life. I've ended up with a lot of anger at people for taking away the opportunity to have the life I could have had. Although in my case it wasn't illness that caused this, it sort of sounds similar to the frustrations you're feeling regarding getting inadequate medical care or the wrong medications. We end up having to put up with the negative consquences of other people's mistakes, failures or wrong doing, which is hard to stomach.

Some people come up with something philisophical about how we're supposed to grow from our negative experiences, or how everyone has problems and it's all about attitude and how you deal with it, but I hate that stuff. I think some of us really do get a raw deal, and we just have to remember that it's hard for those who have it easier to really contemplate what it's like to struggle.

Don't give up hope though. A great job and marriage (if that's what you want for yourself - not just because someone else thinks it is!) are all possibilities for most people with Crohn's. You could follow these rough years with better ones, especially if you are able to find treatment that suits you, or if you get lucky with remission, or find a good doctor, or perhaps just manage to find a lifestyle - a job for example - that happens to suit your illness.

Maybe you could seek out some hobbies or ambitions that are more compatible with the illness you have? For example, when I was healthy I was very outdoorsy. That doesn't suit being sick at all. After I was ill, I happened to find a passion for academic work. It wasn't my ideal, but it was physically manageable and turned out to be more rewarding than I imagined. What sort of things are you interested in? What are you studying? Is there some way you could make studying more easier when you're not able to go to class? Maybe talk to professors on Skype or get them to put lecture notes online? Get permission to take tests at home?

You're dealing with something most people are not, which is admirable in itself. Don't hold yourself to the same standards as others and don't let others expect too much of you. Most people are always doing the best they can in the circumstances they're given. If that's what you're doing then don't let anyone make you feel like you're underacheiving. I hope things will get easier for you.

 

[Stressed Mom]

I am so sorry to hear how much you are struggling with your CD. I am also a mom of a 18 yr old son that suffers from this awful disease and have to admit in the past I have pushed him to get a job and go out more.....that was before I did my own research and realized that he couldn't do what I was nagging him to. I had no idea of the struggles he faced almost daily because he would hide his symptoms and pretend he was always ok. I have learned so much about CD from coming here and now understand it so much better and no longer put expectations on him. Maybe your mom just doesn't realize how cruel this disease can be, my son has had CD for 9 yrs and until he had a very bad flare this yr and required surgery I had no clue what CD really was. We were not at all prepared for a surgery because we didn't know enough about CD.

Your mother loves you very much I'm sure, maybe suggest this site to her so she can read real stories, struggles and success stories from real people it helped me ALOT so now I can help my son and not cause him added stress by putting unrealistic expectations on him.

Wishing you all the best!!!

 

[Wishes Count]

Thanks everyone, I know my mom means well, and I think she does understand how horrible this disease can be as I was diagnosed when I was 13. She just wants me to be able to succeed in life and be happy.

I have told her to back off once about the dating thing and she got really upset. She kept saying things like 'Aren't there any nice guys in your classes' or 'All those people at your school and you can't meet one?' I got really mad and snapped at her and told her to stop asking because it was upsetting me. She got really upset and apologized and said she didn't realize her comments were upsetting to me.

I do have academic accommodations from my school's disability office, but it still is sometimes difficult. I've done very well in school and tried not to let CD stop me from extracurricular activities, but sometimes I feel like I am burning the candle at both ends.

I'm going to school for Advertising and I am interested in doing creative work. It's very competitive and I really need to go to a portfolio school (which I don't really have money for right now) but I think I would do well working at an Ad agency that was more laid back.

 

[Clash]

Ummm...I think your Mom and I have alot in common, I swear I have said those exact words! And my daughter had to put me in my place as well. I'm glad you understand we are coming from a loving place and at times don't see the whole picture of how it can be taken! Sounds like you have a great Mom, though.

Advertising, wow that is a competitive field and can be very rewarding, I do hope you find your niche in the field and the school/job/agency that is right for you. You are definitely at great school now!

Just more hugs!!

 

[Wishes Count]

Hey everyone I just wanted to give an update. So I ended up going home from my university early because I needed to be hospitalized where my doctor was. My parents had to come out and get me and my dad had to drive my car because I was too weak to drive the 150 mile trip myself.

I was hospitalized for 6 days and it was the worst hospital experience I have ever had. Maybe it's because the last few times I was still in Peds or maybe it was just because this was a different hospital.

So the first night they decide they want me to do a bowel prep to have a scope done. They didn't bring me Golytley until after 1 am!! I only drank about a 1/4 of it since I hadnt eaten anything in days. My doctor was at a conference so another doctor saw me. They said the scopes didn't look that bad, but when they got the tissue samples back they said they were shocked at how severe the inflammation was. (Could have told them that!)

There was some internal medicine team that was obviously not communicating with the GI team, as the next day they wanted to do a small bowel follow through and wanted me to do another bowel prep. The GI told me I didn't have to do it, but they kept insisting. I didn't eat or drink anything between these tests! I dumped it down the sink and told the nurse I drank it. No point in having horrible stomach pains and be completely empty inside. That test also showed nothing.

Finally after the test they tried to give me a laxative because I had terrible pains from drinking the barium. I declined again. After 4 days they jacked up my predisone to 40MG and were like "Okay eat a normal diet" I told them I couldn't just eat anything after not eating for over a week and again they didn't get it.

I really felt like I was being rushed out of there, I wanted to be sure I was keeping food down and it wasn't violently coming out the other end but they were hell bent on me leaving. Again not really the GI team, but the internal medicine team.


Also what kind of hospital pharmacy doesn't have Lilada! I had to bring my own from home!

So I was still able to be home for Christmas, and I am well enough to go back to school. I have 3 classes I need to take exams for still but the professors have been really good about it. I'm still incredibly tired, just sitting around all day, so I won't be returning to work for a while, school should be exhausting enough!

 

[tots]

I dumped my Golytly down the drain last February,seriously I hadn't eaten in over a week

I hope you feel better soon!


lauren