Depressed and Frustrated

[danielleD]

depressed and Frustrated

so here is my story ....
sorry for the rant ...

first off.. i found this site threw my amazing best friend .. i think she just wanted to understand a little more about what i have been going to through.. so she started Googling my life lol ... she came across this site and told me how she was crying all day when she started to read what some of the people have wrote about them selves .. and how is sounded so much like what i was telling her about me ...

I'm 25 years old .. In 2001 I started to get really sick . i told my mom what was going on . that every time i ate anything at all it would make me sick ..i would get pains in my stomach and the diarrhea. she made an appointment with my family doctor right away. He when on that it was a normal every day thing to have diarrhea after eating for teen girls ... so i went home and try to get over the fact that i would have to live with it.. this went on for another year or so .. back and forth to the hospital with stomach pain, diarrhea , throwing up , Joint pain,and night sweats.

so in October 2003 I got Really sick i couldn't keep any down .. even water was making me go to the bath room or throwing up ..My Mother had enough and took me back over the hospital .. Well they still couldn't tell me what was wrong .they said it was dehydration. i went to the hospital every 4 hours on IV..to get me hydrated..this went on for about a week. then by some miracle the outpatients doctor said that it sounded like Crohns Disease. well i had no idea what she was talking about. but they ran some testes. it all came out to be leaning towards this disease called "crohns" which scared me because i didn't know what it was or if it was fixable or not .. but they reassured me that it could be manageable with the right kind of diet and medications.

They put me on pentas 2 400gm four times a day .. i thought they must be crazy . that seem like a lot to me..but they said it would help me. it did for a while. i would get a flare up once or twice a year. my High Years were really bad. any bit of stress and it was like i would die with this belly pain. and of course i was falling behind in all of my classes.becuz most mornings i just couldn't get out of bed and go .. i was embarrassed to be in school because my belly would get swollen and what if i ate lunch and had to go to the bathroom !! I would leave school at least once a week with this pain that i couldn't stand .. it took me 5 years to finally graduate from high school. i wanted to just quit so many times . because even some of my Friends would ask me why i wasn't there and be really mean about the time i was miss at school.they just didn't get it ... but i did it .. my mom was so proud.

so then i thought i did high school (it was Hard)but i wanted or needed to try collage.. so cosmetology it was . (in 2007) it was going to be a Year and a half long .. and some of my girl friends were taking it too .. so i thought if there was a few days i couldn't make it . they could help me out,which they did. but about have way threw the 1st year i started getting this lumps under my arms.which were very painful. so off to the doctors i went .well they couldn't tell me what it was. the lumps start out these big lumps then they open an drain.so it was every day at the hospital again for 6 to 8 weeks of getting these hole packed under my arms (very painful). there fore i had to take a semester off to collage. Which put me behind and i had to stay and make up the time at the end of the year .. i did finally get through it all and i do have my hairdressing license..but have not been well enough to do anything with it!!

i finally got a appointment with a dermatologist. she told me the they the lumps and called hidradenitis suppurativa which could be caused by crohns Disease. she started giving me steroids shots under my arms .. this help for a bit...But nothing is working one them.

i think this brings me up to this year...the worse one yet .... i was in the hospital 4 times this in 6 months it is like my second home.each time put back on prednisone.. i was on prednisone for 8 months .. it just stopped working on me.and i get a new lumps every month..the last time i was in the hospital for 4 weeks it was so hard on me.. and for my mom . i might be 25 but i called her every night crying that i had enough and wanted to come home. my mom dad and bf shawn are he greatest ppl i have in my life. my mother is an amazing lady. she been threw all of this craziness with me .. even when i think i cant take any more .. she picks me up and tells me "everything will work hun .. it just got to for you" ..then there is Shawn .. poor shawn ..we have been dating for 11 years ... yup 11 lol ... he has been here right by my side never moving an inch from me.. he puts up with my bath room breaks my weight gain (which its alot) losing some of my hair, my ugly lumpy arm pits and other lumps anywhere ... my crazy mood swings .. and my constant pain... and yet he is still here loving me everyday .and telling me I am beautiful...

now the Doctor tell me long with Crohns ... i have ulcerative colitis. the doctors started me on Remicade ... well this scared the heck out of me... it is an Iv Drug i get every 7 weeks.. it started off great but then came some side affects.. my hair started to fall out, my skin broke out everywhere, i get joint pain so bad i cant even get up or walk, headaches and more weight gain.. But NO BELLY PAIN... when i go for Remicade i have to take 2 extra strength Tylenol every 4 Hours ... for 48 Hour after getting it.. and benadryl for the reaction i take .. it helps with it all i guess .. But my goodness enough is enough i just wanna to be health and happy not in pain any more!!!

i get so depressed and Frustrated ...
anyway thanks for reading and letting me vent somewhere
i think that reading all of these stories really help me and make me feel like im not alone

Danielle D Xo

 

[tiloah]

Wow that's a lot to deal with! I can understand why you say you are depressed and frustrated.

I hope you know a lot of people on this forum understand what you are going through. We are here to listen and offer support. Have you ever been to or considered counseling? I feel like that is a lot for one person to process without someone to guide you through it all.

 

[danielleD]

thanks so much for reading ... sorry for the poor spelling and mistakes lol tears can do that ... so much has happen to bring on my flare ups .. i guess it is the stress in my life ... my friends help me out a lot too.. i always think that im not sick enough for counseling.. that ppl are far worse than me :s and i would be silly to goo .. if you know what i mean ...

 

[tiloah]

Yes, that's understandable and not that uncommon. I'm glad to hear you have a good support system. It's true that many people may be "far worse" than you, but that doesn't mean it would be silly for you to go. I think it would help you a lot and you are worth the time/effort/etc. involved.

Welcome to the forum, by the way.

 

[danielleD]

Thanks .. And thanksFor listening xo take care !!

 

[xJillx]

Hi Danielle and welcome! You have had a long and difficult journey with your Crohn's. I truly feel for you. I don't think anyone would hold it against you for feeling depressed and frustrated. I think we all have these emotions being that we are dealing with a chronic illness.

But I am so happy that you have such loving and supportive people around you. They sound amazing. I just hope those Remicade side effects will stop, and you can start feeling better. You may want to check out the Remicade sub-forum to chat with others on the same treatment.

 

[michellew]

Hi Danielle,
I just wanted to say hello from a fellow Nova Scotian. I'm in the process of being diagnosed and am not on any meds at the moment. You are fortunate to have such a loving BF and family members.

Michelle

 

[danielleD]

Thanks every one take care XoX

 

[Sybil Vane]

How is the skin now that you're on Remicade? I also had skin problems with my CD. They were small skin ulcers called pyoderma gangrenosum. I went to a dermatologist who connected it with CD and gave it a name. They went away almost the minute I started Remicade and they haven't come back. They weren't anything like you are going through, but I am keeping my fingers crossed that Remicade will help your skin, too.

I also take benadryl, tylenol, and pred with my Remicade infusions after experiencing an infusion reaction. It wasn't severe--I just felt like I had a horrible flu so now they're taking that precaution. Now I really don't feel anything from the Remicade, like the bone pain. It's weird, though, to be tired from the benadryl and hyper from the steroids at the same time!

By the way, it's nice to meet you!

 

[danielleD]

the dermatologist thought that remicade might help me .. but i have got 6 new ones in the last week and a half :/ so it doesn't seen to be help any ... they r so painful i just went for remicade 2 days ago ... i feel so drain from it .. do you get like that ?? this week was my 1st time getting the benadryl, ... i started to get headaches after getting rem ( along with everything ) lol i was so tired lol i fell asleep in the chair and i think at one point i started snoring haha but i think it is helping me ... my body and bones dont hurt any more

thanks for the msg take care

 

[Sybil Vane]

I used to feel drained by it, but I honestly think the prednisone helps me feel less tired. Maybe they will end up adding prednisone to your infusion regimen. It's sad, but sometimes I enjoy being hyper because I'm almost always tired from Crohn's.

How long have you been on the Remicade? Will your doctor consider switching your meds if it doesn't help your skin? That sounds really super painful and something no one should have to go through. I wonder if Remicade just doesn't need more time to work. My doctor added Imuran because I have so many breakthrough symptoms on it, but even that isn't working. Just know that there are other options, and don't give up or start to feel desperate. It takes awhile to find the drug that works for you, but you'll find it. I am keeping my fingers crossed that Remicade just needs some time to kick in!!

 

[danielleD]

i started remicade in march ... he did say Imuran i think . but then something about me not having kids yet and didnt want to put me on it to soon ..Iam consider switching meds if it doesn't help my skin.. there's got to be something out there that will help with this ...

 

[Sybil Vane]

I didn't know that Imuran could hurt fertility. I would assume you would have to go off of it during a pregnancy, but I know a few women who went into remission when they became pregnant. I know there are other stories, too, where the opposite happened. Either way, I am thinking of you and sending positive vibes to Nova Scotia!!

 

[danielleD]

Thanks sdo much :0) take care !!