Eff you, crohn's

[BigRed]

eff you, crohn's

I am so sick to death of this disease. You know, for the first 12 years, we got along just fine. I tried not to complain about the dozens of daily restroom trips, the pain, the annual replacement of the toilet seat. Pushing through obligations (work, kid, school, home) while in severe pain because I don't LOOK sick...and I'm going to lose my job if I don't. Can't talk to anyone about it really because it's disgusting and no one wants to hear it. So away I went & faked through so many days, in spite of what you were doing to me. I was a good little patient through the numerous surgeries. I always tried very hard to remember that there are people out there with much bigger crosses to bear, and reminded myself that I'm still a very blessed individual.

But, I gotta tell ya, in the last 5 years, you've really become a pain in the ass.

Pun intended.

2 more resections. Nightmare after nightmare with attempts at meds. Remicade screwing me up, likely for life. (...I think an RA med GAVE ME RA...awesome) Loss of insurance...and now a fistula. Really? A FISTULA?!

So like a good little doobie I start doing my research. What do they do? What's the surgical process involved? Because, surely, there will be one. Certainly it's not acceptable to just LEAVE this thing open & festering on my body! Wait. What? Surgeries are performed to keep them OPEN? Wait & heal on it's OWN? You've got to be kidding me. There are scores of human beings walking around with these and the best science has to offer me is more MEDS?!

How am I supposed to find a job like this? I can't sit down comfortably. And certainly not for an extended period of time. I can't stand upright because of the cramping. No job means no insurance, leaving my only option for medical treatment the county hospital. Which, I'm lucky because our county actually has a program for continuing care. But getting through the red tape of each and every visit has got to be one of the circles of hell.

And for the icing on the cake & just to kick a girl while she's down...thanks for the phone call from my 19 year old daughter crying (from 1200 miles away at college) because of abdominal pain. After an ER visit & subsequent CT scan, the docs tell her there's inflammation in her small bowel & given her family history, it's likely her first Crohn's flare up. So now she gets to start the whole process from the beginning.

I'm sick to death of you taking over my life. eff YOU!

 

[Crohn's 35]

Ha, good answer!!! :welcome: to the family! I am so sorry your daughter is not doing well either. I too worry of my daughter in University and is 23. I have periods of cramping and the Benytol seems to help when I need it. I hate taking drugs and I hate this disease so EFF YOU too . :lol:

 

[mizgarnet]

Red- I hear ya! I declare war on Crohn's! No one should have this.

Hugs to you and your daughter.

Wendy:tank:

 

[margie]

I hear ya Red, my daughter has an intestinal disorder, can't remember the name of it though, but the doctor asked her if anyone in her family has Crohns Disease, because if I did then that is why she is having stomach issues and skin issues too. We just can't cut a break can we. I, too, am tired of all the faking to seem like I am okay, staying up when the reality is I just want to be in the damn bed and just not ever get up. I told myself though that I am not going to let the Crohn's win me over. I just fight like hell every day. Hard though, especially these last couple of months.

Hang in there!!! Really, that is all that we can do.

 

[RFarmer]

I'm having a seton placement surgery next Tuesday. I had an abscess (ouch), which is like a fistula, but is closed and swells... until it pops at the most inopportune time... A seton is a thread that creates an open fistula, preventing infection. (in case you didn't know, not to sound rude)

ANYWAYS, I always use hot compresses when I'm in pain. Just a facecloth (NOT ANYMORE! haha) under hot water, but no hotter than would burn your hand. It helps drain everything, and I found that after my abscess popped the first time, the pain from the fistula (which opens and closes, hence the seton) eventually went away over the months, and became less prone to infection... But that's the best I can tell you... Take lots of hot baths! Good for cramps and bum issues. But don't burn yourself. That's extremely aggravating.

Good luck to you and your daughter! And hope you find some kind of insurance or medical help. and sorry about the huge post...

 

[Keona]

I have had a really ****** day with surgery being cancelled last minute and at the end of my rope... not sure what to do anymore .. but I have to admit...this made me smile..

not the content..but your attitude.
Thanks Nchuleftingth

 

[aliciars]

hell yea...FU Crohns!

 

[Grumbletum]

I'll add my 'eff u' to the list. I'm at the suspected Crohn's stage of diagnosis having had symptoms for 7 months now. I had a barium test about a month ago and the radiologist said there is narrowing which is probably due to Crohn's. But I haven't got formal results back yet from either the consultant who referred me or my GP. Tried calling the GP all day yesterday but the surgery phone kept giving a 'we are closed message.'
I've been trying to control the symptoms with diet as I haven't been prescribed anything yet, but I don't think diet alone is going to do it. My symptoms are increasing and I'm getting more and more tired. I had a rough weekend and yesterday I felt really p*$$?d off.
I need a new job but not even sure if I could handle full-time hours and what do I declare in the health section of applications? And I need to go see my Mum on the mainland but I just don't feel up to travelling at the moment.
So yea, a BIG eff u, Crohn's.

 

[BigRed]

Thanks guys! Bitter...party of one! You damned right. lol
But look at how many chairs we've added to the table!! You're awesome.

 

[Cat-a-Tonic]

I'm with Grumbletum, also undiagnosed but it's likely some form of IBD. I've been ill for a year and a half now with few answers and still no diagnosis! Eff you, stupid awful mystery illness!

 

[social me]

Big Red I am so so sorry to hear everything your going through. That is alot for anyone and you have every right to be horribly mad. I just found out 1 month ago and my dad had colon cancer at 43, I am 38 so I am scared about that. They think I have had it for a while due to severity. I have been on remicade for 2 years so there keeping me on it but they dont think its helping me or it would of been helping me this whole time. I am afraid of prednisone and my b12 isnt helping. I feel like my life is on hold and it is taken me over. I will pray for you ok, because I cant imagine the frustration you must have after 12 years, you sound like a very strong woman, be proud and gentle with yourself and keep pushing forward, I hope you have a "good day" soon.

 

[BigRed]

Okay so check this. I had to go to the hospital business office yesterday to handle the red tape. My ER visit was this past Sunday & my GI appt is next week Thursday...that was the soonest they could get me in when I called.

Now, I can't count the number of times in the 18 years I've had this disease that I've had to wait an unusually long time because of another patient with an emergency. Sometimes, I've been that patient. I get it. I don't have a problem with it. Multiple times, I've watched it happen with my current GI's clinic. So, with the red tape handled, I thought I'd pop upstairs and see if he possibly has time for a walk-in. If not, no big deal, I've got the appt next week...but I'd sure love to get started on whatever treatment lies ahead.

So the nurse comes out & starts asking me graphic questions right in the lobby in front of everyone. I'm crying & trying to be discreet in explaining the latest. He finally takes me to the back so that "we can talk" and he says to me, okay, so what's changed between your ER visit on Sunday to now that requires you to be here a week early. I was like whoa...I explained to him that, FIRST of all, this is an urgent issue, in my eyes. I've never dealt with anything this severe before. It's terrifying! Secondly, I merely thought I'd stop up & see if his schedule permitted it today. It's not like I was out there demanding and screaming like a lunatic. I'm calm, but crying. I'm embarrassed as it is with the situation, and asking for help isn't really in my DNA...and the nurse replies to me with "well you're wanting me to go to the Medical Director and ask for you to be seen we need to understand what, exactly, has changed since Sunday."

We went back and forth briefly until I finally said that I'd just wait, it's only another week. I only stopped in to ask, for f***'s sake!!! Hit the elevator, completely broke down. Sobbing. It was just awful.

Am I in the wrong here? Am I being too sensitive? Over-reacting? Am I wrong for wanting to be treated with just the teensiest amount of respect? And, dare I ask, dignity?

I honestly don't know how much more I can take.

 

[social me]

Big Red it seems to me I read many posts about the lack of thoughtfulness on behalf of many docs. You are are one of the many reasons why health care should be a RIGHT not a privledge. I hurt for you when I read what u r having to endure. Crohns is bad enough but to have to fight the health care system at the same time isnt fair, its not just. I will pray for you. Keep fighting I understand sadness and feeling defeated, LORD do I understand. You are not over-reacting... keep fighting.!

 

[BigRed]

Thanks, Social. It sounds like you've got a rather full plate yourself. Nothing like the vicious cycle of stress to keep that Crohn's nice & active, eh? Sorry to hear it.

 

[margie]

Big Red,
You are right, that is why my book is titled Vicious Circle.....lol....Crohn's needs to go away and give all of us a break

 

[BigRed]

GI appointment today at the clinic. I've made a checklist of everything important to discuss because every time I start talking to someone about it, I break down. I've summarized all symptoms, pains, etc in a bullet-pointed outline.
Allow me to share with you the most important point.
* Indifference from my caregivers will not be tolerated.
* Period.

I've decided this is my mantra for the day. God willing, I'll come back on the other side with a solution, and maybe a teensy bit of respect. Or dare I dream...compassion.

 

[BigRed]

So the visit itself went well. I explained to my doc about the nurse from last week & that I simply won't tolerate it. I told him that I do understand that in the life of a GI clinic employee, fistulas (fistulai? lol) are a common occurrence...however, they're still a very very big deal to the person with one. I even told him about this message board & suggested that maybe his staff browse through for a better understanding of what it's really like to live day-to-day with this disease. He understood completely, was compassionate and genuine. He brought in the head doc of the GI department who provided the same level of care my GI did. I told them I was sick to death of not being heard, and they listened. So that was a dramatic improvement.


The nitty gritty of it is that, yes, the fistula has formed. They understand why that would be my primary concern. They advised that their primary concern were the CT results. There is significant inflammation at the illeum, and they were quite surprised that the ER docs didn't admit me due to the severity of inflammation. Sigmoidoscopy (with sedation) is being scheduled.

The plan of attack:
Humira (starts next week after completion of TB test)
Azathioprine, 50 mg (will increase after blood tests are back)
Budesonide (supposedly it doesn't have as many negative side effects as Prednisone ...anyone got any feedback on that one for me?)
Canasa Suppository (oh, joy.)
Norco for pain (I won that fight, too! Epic day!)

Fingers crossed!

 

[BigRed]

God, I am in so much pain today. Started yesterday. In the bum area. I feel like a colony of fistulas (fistulai? lol) is trying to bust through from every possible angle. Nothing helps. I'm not feeling so strong emotionally today.

 

[Grumbletum]

Wow, Red, what an emotional rollercoaster you've been on. But well done you on standing your ground and getting them to really listen to you. Makes such a difference. Hopefully the treatment plan drugs will kick in soon and you'll feel better.
Way to go girl, you're an inspiration.
Helen x

 

[George.murphy]

wow this was strangely accurate xD couldnt agree with u more, ive only been diagnosed for over a year but ive been suffering for at least 3 and already its reli started to take a toll on my everyday life. and yes granted there r people out there with much bigger crosses and hats of to them for living with it but tht doesnt make our pain any less real of any less of a kick in the bollocks lol

 

[PnaG]

OO im so frustrated for ya all, as much as I am for my own child. NO O. NE listens in the dr office, the ER. I too understand there are emergencies higher on the list than mine, but DAMN I want to be heard when I ask a question. I dont think politeness, manners or respect cost anything, so why is that people in the medical field dont have any?? Of all the fields to be in rudeness, makes me so angry.

wow, i feel like im on a soapbox. not 10 minutes ago on the morning news show there was a story about being your best advocate in the hospital and doc appointments. Maybe those working there should get a refresher coarse in respect and decency. I dont expect for anyone to think my child is the ONLY child that is sick, but darn it, he is my child and he is sick, so when I ask, LISTEN & RESPOND. i dont think thats to much to ask.

Sweetie I hope the meds kick in soon and ur feeling better.
Blessings
******Phyllis

 

[allieinwonder]

First of all, BigRed, I am so sorry you are going through this at the moment. I really hope the meds help and you can start feeling better!

I will definitely concur on the EFF YOU CROHNS. I am another undiagnosed one on here, with no end or proper medication in sight. My docs are NOT listening to my symptoms, my pain, and my frustration. They see the normal test results my body seems to love producing (why crohns, why you do have to be so jumpy and inconsistent???), and ignore me completely. Would IBS put me in the hospital? REALLY?? I have a GI appointment next week due to the hospitalization and I am already arguing with my GI in my head (I might be going slightly crazy)...since the last time we talked he told me to go to the ER (I was admitted), but then said it was just IBS and there was nothing he could do. THIS NEEDS TO STOP!