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Just so d-o-n-e

I've been off Cimzia (my last biologic medication option) for about 7 months now due to anaphylactic reactions beginning with that med - as I did with Remicade and Humira. I'm on oxycontin (60mg) 4x/day, Percocet 4-6 tabs/day, and Neurontin (1800mg/day), plus my thyroid med b/c I have Grave's disease too and Xoloft and Klonipin for the depression and panic attacks.
I lost my job over one year ago and while I am married I have 2 kids from a previous marriage who my ex does not support financially. My husband has 2 kids from his previous marriage that due to his income (he's a Forensic Pathologist) pays a hefty child support-and that's fine b/c that's the right thing to do. BUT....when people look at you and assume that your life must be so easy b/c your husband is a doc and you have access to great military healthcare, etc....it's just so wrong!!
Yesterday I was in bed until 5:30pm. I hurt all over from head-to-toe even with the narcotics. I am in pain all of the time. I can't seem to lose weight even though I've got diarrhea bad enough to have accidents at this point. I have nothing in me to help with my disease and just feel like I'm a "sitting duck" so to speak for my disease to regain control of my body.
No one seems to truly understand how much this disease hurts. How much this disease limits your abilities. How much this disease depresses you. And moreover, how much this disease changes you.
I don't feel worthy of love from anyone but my parents. My marriage has major unresolved issues and my kids are, well, they're kids (14 & 11). I want to be a great mom and try to be a great wife through all of the emotional hurt, but when it's compounded with the physical pain, how can I do that????

No one seems to understand or want to give patience to the fact that I'm depressed, feeling unloved, unwanted and moreover unattractive as a woman. I hate this disease and how you scream for it to never identify you, and encourage others to challenge the disease and to not allow it to identify or label them, but try as I might it is doing just that and it will not stop. It seems I am forever stuck. I want to lose this weight that the meds made me gain even while only eating oatmeal and a small portion of dinner with my family, but my body won't lose the weight. It's yet another battle. I used to run- literally run marathons with my now husband, but I destroyed myself and was down to less than 120lbs at 5'8". I was malnourished and he never saw it or wanted to see it, my family pleaded with me to stop b/c I was destroying myself and all I could see was that I was DOING IT! I was pushing past the barrier of this disease (even when pooping in the woods along the trail while running, chugging a whole bottle of Imodium before a run and taking pills during a run, not eating before or after because of the cramping), but I was doing something normal. And now I can't.

Does anyone understand the hurt? Does anyone understand the reasons behind the isolation I put myself into? Does anyone understand the feelings that I can't do anything, not even get a job b/c I have so many appts and b/c I have physical limitations. Does anyone out there understand me?
Does anyone know how it feels to look nice on the outside but inside all you can think of is how your body is destroying itself. Sure, I stand at 5'8" and am fairly attractive with auburn hair and blue eyes, nice clothes that make me look "put together", kids who behave in public, and a smile when required. But inside my mind I'm drowning and all I want is a touch, a physical acceptance and to hear that I'm beautiful, wanted, accepted, worthy, etc....and that my disease as disgusting as it is doesn't change how people view me and that I'm okay.

I'm d-o-n-e and alone. I'm surrounded by pets and a family and yet feel alone and like I can't carry-on.

ohhhh Kate I am so terribly sorry to hear you are feeling so down :( and I'm afraid I have no good answers for you. Having to deal with this disease and the pain in causes is extremely difficult for anyone suffering from it or in my case having to watch my son suffer.

Sometimes it's easier for people that care about us to try to overlook illness and act as though things are "normal" because they don't know how to deal with it either and they too feel helpless.

You are a very strong woman to be dealing with all these physical and emotional issues and hope you can see that. We as women can be very hard on ourselves and seek love and acceptance throughout our lives I think regardless of disease, weight, money, etc. it's not how others view us it's our perception on how they are viewing us that bothers us sometimes (at least thats what I think). I can tell by your words that you are a very beautiful woman who deserves love, happiness and acceptance. This awful disease does not reflect who you are as a woman, mother, wife or person and I really hope that things get much better for you very soon :hug:
Hi kate,

I am so sorry you are going through this hell. I have not been dx yet with crohns, but I have been chonically ill for the last 9 years and I know exactly what you are feeling and it is normal to feel this way when you have a chroinc illness that has taken over your life.

I also get depressed as well. I am in a lot of pain a lot of the time. There are days when all I can do is sit with the heating pad all day! I cannot even take many pain meds due to all the severe side effects I get , so it really sucks. I use to be a very energetic person, I was full of life as well. I miss being a productive member of society. The only thing you can do is to take it day at a time. You did not ask for this disease, it just happened and is sucks ass to be sure! I also have a son, he just turned 21, but when I got sick he was only 12 years old. I do understand how it can be so difficult trying to rasie your kids and do all the stuff you need to do and being sick and hardly being able to do them. Well, I use to puch myself also until I figured out that I was only hurting myself more. I got to a point where if I was so sick I just could not do something, then I would not do it! I would wait until I felt like I could. The more you push yourself, the worse you will feel. I am guessing your hubby is understanding towards your illness right? I mean that makes all the difference. Do not beat yourself up though..

Just know that you are not alone, and I am certain every single person on this board totally understands what you are going through. This is a shitty hand of cards that we were dealt but what can ya do?? You gotta push on. JUst take it one day at a time. Do NOT ever blame yourself, ever! I mean for me, I had family members who totally did not get what I was going through. My own brother told me once that if I would just stop thinking about my pain it would go away!!! Umm, yeah right. Needless to say I wanted to kick him in the you know what when he told me that! I just learned to ignore ignorant people. I wont waste my time or energy on them.

Hang in there, things will get better. Sending )))BIG((( hugs your way!
Wow, thank you for your words of encouragement. It is just like your brother said, "why don't you just forget about your pain and it will go away!" Oh, okay, so cut off my pinkie toe and I'll just act like you didn't just do that and it won't hurt, right? Because that's about the most screwed up philosophy out there. My mom, God love her, is so very concerneed about me being on the high dose of narcotics I'm on and the load of narcotics over the past 3yrs I've been on. I haven't always been on oxy and percocet. It really all started 3 years ago when I got Mono. No one knew what was wrong with me until I went to the ER b/c my doc was slammed upstairs with patients and a Nurse Practitioner saw me, I explained things and she thought outside the box and thought lets do one more draw of blood for mono, and sure as the sun shines....I've got Mono! That started one round of narcotics, but I was already on liquid morphine to give to myself as needed to slow my gut down immediately-and me too because it knocked me flat on my ass! But after the mono, the next year the kitten bit me and it started looking infected...then a pustular bubble formed (on my thumb), then it started REALLY hurting. I went into my doc who saw me immediately (I love him. He's one of the few most senior docs in the Navy at this hospital). He said, we need to excise that because it's an abscess. I called my husband's office and had him high-tail it up to the room because I was in tears. They lanced it and all w/o any litocaine or anything topical. Hurt like hell.....oh, well, I guess that's because MRSA (ya know, flesh eating bacteria) tends to hurt A LOT!!! More antibiotics, more abdominal pain, more surgeries and the list goes on and on.

You had asked me if my husband is encouraging and supportive; to a point. He strictly believes in autonomy and I'm a person who yeah, I get you want and need "your time to decompress", but when I'm in bed or in my chair in the family room still in my pjs at 6pm....I'd much rather he didn't go running. I so want to be energetic as you do. I so much want to go to the new Rec Center tomorrow and not because it's NYEve, but because I want to prove to my riddled, scarred, painful and shaking body that no matter what it throws at me I can push past it and I can do it.
But then there's my reality like today...I slept late, didn't even realize it's NYEve and didn't plan anything for my family (and they're okay with that), but I needed to hit the store badly for groceries and such, but my aim to do so after the early movie we saw (Silver Linings Playbook) just wasn't happening and instead I popped a klonipin and took a 2hr nap in a warm bed with my kitties. That's me. Pathetic.
As I sit here drinking a Sam Adam's knowing how I'll feel in about 30 minutes and don't care, but thinking what's your story? Who are you? Why have you not had a diagnosis in 9yrs and why do you feel it's Crohn's or something of the sort and that this is the best forum for you??? I see you're in the US as am I. Where are you, east/west?

Hey kate,

Yes, I totally get it. I also get jealous of my husband when I see he is able to do things that I would love to do, or use to be able to do without any effort. It is so hard.

My issue started 9 years ago after I got sick with a viral infection( like a nasty cold or flu o something)that I aquired two weeks after I got the flu shot. It started with like cold like symptoms. Well within a few hours my whole throat and upper esophagus was on fire!! I dont mean a sore throat, I mean it felt like I had developed a third degree burn in my throat. It was not like a sore throat where it hurt when you swallow. It was a continuous severe burning sensation. I went to the ER and they were useless. I had one doctor tell me that I likely had leukemia or aids!!!!Seriously?? I was freaked out. Well tunrs out I did not have either of those things. I knew I did not have AIDS, but I was worried about the leukemia thing. Fast foward a bit, I ended up seeing an ENT doc and he looked dowm my throat and said, Holy Cow, you are inflammed! HE put me on steroids for like 5 days. It helped take the pain down some, but it did not take it away. Long story short, I lived with that throat burning for over a year and half! It was awful. I could not even talk due to the pain and it hurt even when I did not talk. I went all over to different doctors for this, no one could figure it out. ( even went to MAYO clinic!), They just told me that I likley had some sort of autoimmune issue, they just could not figure it out and told me to hook up with a doctor here in my area( Ummm, hello, why did they think I went to them in the first place??). I mean they were totally useless. A waste of money!

Well I also had big time upper gut issues as well ( feeling full after only eating a small amount of food and severe bloating.) I was dx with having a neuropathic dysmotility of my small bowel. I suffered with that for a few years. I then went completely Gluten free and that got WAY better. I also was dx with fibromyalgia and also IC( Interstitial cystitis) of the bladder. OMG, the worst pain I ever felt. It was like the throat burning all over again but in my bladder! I went through soo many treatments to help the bladder( different meds, bladder instillations where I would instill medicine into my bladder with a catheter, physical therapy, you name it.) Well the only thing that helped was antibitoics. I also get UTI's frequently as well. Well after I was put on a low dose antibiotic, it really helped my bladder pain. I had to be on low dose antibitoics for 4 years. It really helped, but the one I was taking stopped working so well and my bladder was bad again. I am now on a different low dose antibiotic( augmentin) for the month until my doctor figures out what she wants me to do.

My intestinal issues started about 2 years ago really, meaning the lower intestines. My symptoms are severe pain and crampiness and feeling just sore all throughout my intestines. I was told by my gastro that I have IBS likely. I have not had all the testing due to my issues and how sensitive I am. For instance, I just had an MRE of my small bowel a couple months ago. Well I have been messed up since. I got nasty diarhea from the contrast I had to drink and it inflammed my bladder and I got a UTI. I had to up the one antibitoic I was on and it did not work.( that is when I became immune to it and had to switch to the augmentin). Well the MRE was normal. I also had a fecal calprotectin stool test which was normal and normal blood work. But I will say that I have had elevated C-reactive protein levels and sed rates for the last 9 years on and off. I also had a positive ANA. I have yet to have the colonoscopy. My gastro doc is afraid it would worsen my issues, especially my bladder after seeing how the MRE went.

So I a kind of stuck between a rock and a hard place here. I am worried this is more than than IBS though. I mean my pain is horrid. When I am in a flare, I am literally stuck laying with the heating pad ALL day! I dont have the typical diarrhea that most have. But I have the severe pain and cramps in my intestines and that " feeling" like I always gotta go! I have just never met anyone with IBS to have this bad of symptoms.

I live in Chicago IL, in the Jefferson Park area. I am about 15 minutes away by expressway from Ohare airport. Where are you located again??
I can definitely relate to what you are feeling right now. Although I don’t have two children and a husband, I know its frustrating to have other people look at you like your some sort of drama queen and that you couldn’t possibly be in that much pain… I have been dealing with crohns since I was 12 years old. (1996) and for most of my REALLY bad times I was still living at home with my parents. But its still hard to cope with everything your body is putting you through some times…

I moved across the country to Los Angeles in 2005 when I was 21 with no one out here that I knew at the time. That was scary… especially because I knew that if I had trouble with my disease that I didn’t have someone to take me to the hospital… I would have to get their on my own. I ended up having another really bad flare up in 2007 which landed me in the hospital several times for fluids and pain meds before finally making me so sick that I had to be on IV nutrition for a month so that they could even do the surgery on me. At one point I was literally blocked completely…. Nothing was going down so everything was coming back up… Extreme pain kept me from getting off the sofa most of the time… and yet somehow I needed to get myself to the hospital or there was no telling what could happen. So I mustered up the strength to get in my car, take my little garbage can to throw up in, and drive myself to the emergency room. I stopped a few times along the way to throw up and deal with the pain, then kept on driving….

Its so hard for people to understand, I mean they cant understand, what we go through… But something that really helped me was seeing a therapist. I didn’t start seeing a therapist specifically for this reason but the trouble with my disease did come up in sessions and it feels so good to talk to someone about everything. Another thing I am going to try is Support Groups for Crohns. I am actually going to one next week. This will be my first one, but I am excited to actually meet people who KNOW how Ive felt my whole life…

Hang in there and I hope things get better for you! I know how the anxiety and depression can make you even more sick…