Sad Crohns Girl

[nikki89]

I'm new to this site and thought I would share my story and frustrations as I just had a colonoscopy today and am currently hating my life and this stupid disease.

I am 23 years old, I was diagnosed back in 2008 when I was 18 but my stomach pain started a year or even two before that. When I was 15 I went on several rounds of Accutane. I'm not saying it's their fault, however there's no family history of anything like this, immediate or otherwise.

I've had four colonoscopy's up to this point. I've had some traumatizing colonoscopy's in the past, so I tend to put them off until I can't bear it anymore. Two years ago it was at it's worst: the doctor immediately checked me into the hospital after my procedure, stating that after being able to make out more than 20 ulcers I was one of the worst cases he'd ever seen. I was there for three weeks, pumped full of steroids and put on a Clear Liquid Diet for three months. It was awful, I had a PIC line inserted in my arm and had to have TPN (which is this like GIANT bag of liquid nutrients through the IV).

Ultimately I was put on Remicade (which all my doctors have said "its a godsend! its a miracle drug really!) and it did help with the Crohn's symptoms. The stomach pain was practically gone and I went to the bathroom more regularly (although never completely normal, for sure). But soon I started getting sick all the time. Pneumonia, bronchitis, strep throat, sepsis, mercer, thrush, sinus infections, staph infections... suddenly they were saying I had ulcerative Colitis, very similar to Crohns. I started blowing up like a balloon during my infusion and once I fainted... so I said SCREW THIS went off Remicade and cancelled all my GI appointments. And life was good for 2 years! I was able to get a job because I wasn't at appointments always or too sick to get out of bed. Life was good.

Now here I am today. About three months ago the cramps started back up. Unimaginable how bad these cramps are (I'm sure some of you know). I have to run to the bathroom a dozen times a day. I wake up during the night every couple of hours from cramps and having to use the bathroom. I went from being 140 (big boobs, healthy glow, I looked GOOD) shriveled down to 113 today. No energy. Can't work, so no money. Embarassed to spend any real time with anyone because I can't go long without stinking up a bathroom. I'm anemic of course. Way elevated white blood cells. Depressed. Super depressed, guys....

It's so bad that I have to do something. They put me on Entocort today, which I actually have never had. But it's a corticol steroid so I know I'm going to be miserable on it. The Doc said she will put me on Humira instead of Remicade to see if it effects me better. But I don't feel good about it. I really hope that it works for me.

I'm scared to be honest. Scared that I have to rely on IV infusions for (probably) the rest of my life. Sometimes I just want to give up. Let my body just devour itself from the inside out. Even if this new treatment works, I'll have to find a job that will let me take all this ridiculous time off to go to the doctor. And what if it doesn't work? I feel like I'm a prisoner in my own body. I wonder what kind of man would want to pick someone like me to spend their life with and make babies with. I feel like no one understands how shitty this disease is. I feel judged by everyone, probably get called lazy or "oh that poor girl" because I can't get out of bed some days. Sometimes I think to myself that I should just let this disease win, it's natural selection right? Maybe I shouldn't be here.

OKOK, I'm over reacting. It has just been a bad past couple days with my stomach x-ray (with the gross Barium drink that my stomach couldn't process, puked all over the exam room because the stupid Radiologist was like "o your stomach won't empty? just keep drinking more, it has no where else to go" and after 2 hours with none going past my stomach (ileum??) just sending me home) taking place right before having to drink the stupid prep for the colonscopy. Then the stupid colonoscopy itself (the sedatives they give me just don't affect me good, I had to ask him to stop the procedure before he was done because the pain was too bad even after another dose) Just a longgg long illness, I'm sick of it.

I just want to curl up and sleep forever but I know I'll just be up in pain in a couple hours anyway.

 

[deb123]

Big hug for you :ghug:

You really are going through it x

I have been in your situation, and felt so desperate for peace of body and mind.

I actually wrote in all down in a open letter - similar to your post, and showed it to my GP, who was so shocked when it was written down like that, and how every part of this awful disease was affecting me.

He encouraged me to show it to my Gastro Doctor, and we sat for ages discussing what we could do to make it so much better for me. It was like have an actual sympathetic ear with a professional. I always used to feel rushed, or wished I had told them things, and not felt so emotional time.

Anyway once I had done that I felt like I had a plan, a course to follow to getting some relief.

I'm not saying its gonna happen quick, but it helps if you know you are on a plan of treatment.

Im not surprised you feel so low, you've been through the mill, and are still suffering and i'm sending you my best wishes.

 

[afidz]

Hello Nikki, I am sorry you are having such a hard time. But you are in the right place. We've all been there at some point in our lives (some of us still there). This disease is hard to live with and unfortunately there is not very much awareness about it. People that don't have it or watch a family member go through it think that you just always have a stomach ache. But thats not the case. Its not just a stomach ache. The pain is strong and intense and unbearable.
I like what deb said above, write it all down, emotions and all and show it to your doctor. If she can see what hardships you go through or what emotions you feel, maybe the 2 of you can work out a plan.
Entocourt, although a steroid, is supposed to be a little milder as far as side effects go. I hope that it helps. I also wanted to mention that with Humira, you don't have to go to a hospital, you just do it your self every 2 weeks (sometimes every week). I had a very bad flare in 2009, almost killed me, Within a month of starting Humira I was in remission. I know its rare for it to work that fast, but I just want you to try and see the light at the end of the tunnel.
I was in the same boat as you (we are the same age, I got DX in 2007 though). I didn't know how I was going to find love. All I can say is this. Take care of yourself first. Once you start feeling better, everything else will fall into place. When I get upset with my health or happenings in everyday life my boyfriend always says "Everything is exactly how it should be, everything is right with the world". To me that means I am exactly where the universe intended, I am dealing with my disease the best that I can.
Try to keep your chin up, I know its hard, but you have to find the strength to power through and kick Crohn's in the ass. Use this forum to your benefit. Research anything and everything you can. You have to be your own advocate, you need to understand what is happening to your body and why its happening. The best thing I ever did for myself was join this forum. In the year that I have been on here, I have learned so much about my disease, the meds and how they work and most importantly, I learned that I am not alone. I have developed life long friendships with some of the members here. Here, you can express how you feel or talk about whats going on and know that you aren't being judged. The members on here are so supportive and knowledgeable. If one person doesn't know how to help, they know someone that can.
OK, I think I am rambling now. I just want you to know that you have support here. :hug:

 

[Cat-a-Tonic]

Hi Nikki, welcome to the forum. I'm sorry to hear you're so down. Unfortunately depression is a really common symptom when you have an illness like this. A lot of us have had very similar feelings. I know that personally, my depression eases a lot when my symptoms get better, so I hope you're able to feel better both physically and mentally/emotionally soon too.

You mentioned needing a job with a lot of sick time - I see you're in the USA, so you can apply for Family Medical Leave (FMLA). FMLA basically says that you can't be fired or disciplined for taking more sick days than the average person would, due to having a serious ongoing medical condition. So no matter what job you get, they'll have to adhere to FMLA once you apply & are approved for it (talk to your human resources rep about applying for FMLA once you are hired). Try not to worry too much about the job stuff, FMLA is in place specifically to protect people like us.

You absolutely should be here, do not let the illness win. Keep fighting, hun. It's exhausting and frustrating and it seems like it'll never end, but keep fighting - you're very young, and they're coming out with new and better treatments all the time. There may even be a cure within our lifetimes - if you don't believe me, have a read through some of the stem cell treatment blogs, it's very promising stuff. It's not a cure yet but may be someday. So hang in there, hopefully the Humira will get you feeling a lot better, and hopefully brighter days are on the way.

Here's a link to the main thread about stem cells, there are links within this thread to the various blogs I mentioned. Effdee's blog is quite informative and interesting. Mr. Ziggy's thread used to be better but he edited a lot of it out more recently.
http://www.crohnsforum.com/showthread.php?t=22259

 

[nikki89]

Entocourt, although a steroid, is supposed to be a little milder as far as side effects go. I hope that it helps. I also wanted to mention that with Humira, you don't have to go to a hospital, you just do it your self every 2 weeks (sometimes every week). I had a very bad flare in 2009, almost killed me, Within a month of starting Humira I was in remission. I know its rare for it to work that fast, but I just want you to try and see the light at the end of the tunnel.

I didn't know you didn't have to go in for the Humira, that's awesome! I'm already more optimistic

 

[afidz]

yea, its an injection pen, super easy to do to, there is little room for error. I hope it works well for you and I am glad your looking at a more positive light. Let me know if you need anything or have any questions

 

[EthanPSU]

(I only read like the last 2 paragraphs)

But to comment on the Humira.....

I went through sooo many drugs since I was diagnosed in 2007, until about a year ago when my Doc put me on Humira, nothing worked and I was miserable like you seem to be. Humira was amazing tho! I was def scared of the injections when I started but after almost a year it's like nothing, (it makes you really good with shots if you have a fear of them), it also has been the best drug I have been put on, after about 2 months by symptoms started really slowing down. My doc then put me on Aza ontop of Humira, and after a month my symptoms almost completely went away, and they are still currently away!

Hope you get better though! I know it can be tough, especially being young....