#j pouch

[i-wheely-love-poodles]

my gut organs. they are pulsing.

with each inhalation, each breath, to stay alive, they move.

pain. Pain! pain. Pain!

to exist is pain but to move is to invite more pain and i must move to stay alive.

[shallcarvemaam]

[severinetherat]

First day back!

I returned to work today. I’m starting slightly later but otherwise doing normal hours for the time being. My hours will likely go back to full time next week but it’s not long until I finish there and start working at the local hospital. I’m a little nervous about starting a new job because of my UC and recent surgery but at the same time really looking forward to it. (I’m going to do a post…

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[remem-brandt]

Making Up For Lost Time: A Poem

“At 17 the doctor told me that I was chronically ill

And that memory is burned to the front of my mind still

I mean how could I find relief from this pain I’d been feeling?

Couldn’t absorb that it was possible

That for 3 more years I’d be living in a hospital

With drugs in my veins and family by my side

Never ceasing their prayers for the pain I couldn’t hide

From this sickness that I had been afflicted with

Never could have predicted

How close I could get

From treading the line between life and death

So every day at 17 I was dying while living

Holding my head high but ready to give in

I mean there comes a point when you wonder just how much you can endure

When the doctors are telling you they can’t find a cure

So you’re left stuck in this bed and stuck in this body

I never thought at 17 I could have fallen this ill

And still I regret all the things I had missed

Graduation and college and friends going on trips

While I was stuck in a bed or at home with this pain

And at 18 I was wondering if I’d ever feel the same

I mean one day I woke up and my body felt awful

No warning just one day I got given a handful

Of shit I never signed up for or wanted

And then one day I’m told that all of it’s chronic

So at 18 I’m getting up every day in the morning

Trying my fucking hardest just to feel normal

Hardly telling anyone what I truly felt inside

So I hid all my feelings for fear of being depressing

But I’ve decided I’m done with all of this repressing

I mean fuck it at 19 years old I was dying

At 19 years old I was lying in a hospital bed waiting for morphine

Praying for more dreams that this nightmare one given

This life I’m not living

My body was rotting from the inside out

My head and my heart were filled with such doubt

And my sister was telling me she feared for my life

Because her own baby sibling was going under the knife

So give me all of your struggles and strifes

And I will take them with ease.

I’d trade you any day

Because at least I’d have a life instead of throwing it all away

To a white room with white sheets and white pills and no sleep

So give me it all because at 20 I was dying

And at 21 I’m still trying to grasp all this shit

That three months ago I didn’t know if I’d live to see tomorrow

Didn’t know if God would grant me another day to borrow

And my heart is filled with sorrow and grief for my life

That was cut away from me like my guts with a knife

But now at 21 I’m living

But still struggling with forgiving my body and God for all of this shit

For all of these problems I’ve been forced to deal with

Nobody asked me if I was ready to take it

Every day waking up and wondering if I can make it

I’m done faking that I was ever okay

Done worrying that my sorrows would get in everyone’s way

And I’m done sugar coating

Because fuck it, I was dying

And I’m done lying

To myself or to anyone else

So no, I’m not okay and I’m swallowing my pride

And finally letting show what I’ve been hiding inside

Because at 21 I struggle to get out of bed

Every day and that much is fucking with my head

And I’m waiting expectantly for something to go wrong

Because that’s how my life has played out for so long

And at 21 I’m waiting to be free

From this disease that has its grasps so tight around me

And I’m struggling to make up for so much lost time

Because I’m trying to get back all the years I was dying”

- remem-brandt (please don’t remove credit)

[8bitmickey]

Just got my colon removed

[colitisblues]

here's my facebook post announcing my surgery...

I don't ever write these long posts but this is kind of a big deal and I think I'm entitled. If you've spoken to me (or my parents) at all recently, this is old news for you, but for those of you who are hanging out on the sidelines, here's the official update on my life. Gonna try to keep it short and sweet, but there will probably be a TLDR at the end anyway. Item #1: I'm taking a year off of school to focus on my physical health situation. Item #2: A week from today I'll be in the hospital, hopefully doped up on copious amounts of pain meds after successfully completing the first of a series of three colorectal surgeries. Item #3: I'm having my colon removed, ladies and germs. After two years of struggling to find a medical therapy that would push my ulcerative colitis into remission, I've hit a wall. Unfortunately, I'm out of options short of hiring a witch doctor and a full colectomy has become "inevitable." If nothing else, though, at least I can say I tried. I gave my body a fighting chance and I did what I could to hang onto my large intestine. The thing is though, medicine isn't perfect and while research is still being conducted and new drugs are being developed, the reality of the situation is that I can't live my life this way. In addition to dealing with the inconvenience and anxiety associated with frequent bathroom visits, I've been battling overwhelming fatigue, exhaustion, pain, malnourishment, weakness -- you name it. I like to think I carry myself well and that I put on a brave face with my 3.5 GPA and my smiley summer travel photos but I've been on high doses of corticosteroids for the entirety of these past two years with the exception of a few stray months. In addition to the symptoms of my colitis, the side effects of these meds have been completely destroying me. Give that a quick Google if you feel so inclined. But to stay on prednisone long-term could potentially have life-threatening consequences and I'm not having it. They don't help nearly as much as they hurt and after all this time, I'm tired. I'm sick and tired and I'm sick and tired of being sick and tired. And as scary as surgery (and the pending recovery) is, I've been equally afraid of living an incomplete life. At nineteen years old, to feel this trapped in your own body, trapped in bed while your friends grow, to feel as if there's no way out... it's crushing. I've been crushed by my IBD. And that's okay. These surgeries are going to help me take my life back. Yeah, I'll have an ileostomy for six months and I'll be in pain frequently and I'll be stuck in bed again, but at the end of it all, I'll be pain-free. I'll be able to eat without worrying so much about what'll happen when I do. I'll be able to exercise without feeling faint. I'll be able to sleep through the night for the first time in months, go on roadtrips, focus on what actually matters to me instead of only what requires my immediate attention. I'll be able to do so many things I long since gave up hope of doing. I'll be a new woman, essentially: a new woman given the promise of a more fulfilling life. What a gift that is. Item #4: I'm more terrified than I've ever been. Item #5: I'm more hopeful than I've ever been. TLDR; I'm having my colon taken out. It's scary as all hell, but I'm gonna be so much better off by the time summer rolls around. (Also gimme Netflix recs, pls & thx.)

[i-wheely-love-poodles]

I am super privileged to have the family support that I do.

I currently am in WA through Job Corps but my family lives in AZ. My GI surgeon who I need to see is in Seattle. Due to my declining health I have had to drop to part time college and am not able to stay in Job Corps so they are sending me back home to Arizona.

I made an appointment with my surgeon in Seattle in November under the assumption that I was going to be a couple hours away and able to easily attend. Now that I’m moving to Arizona that’s not the case.

My parents care about my health and are willing to pay for me to fly to Seattle several times to first consult with the surgeon and then actually have surgery for my ostomy.

I am such a complicated case surgically due to my history of J-pouch and J-Pouch Prolapse. My surgeon who fixed my prolapse was considered an expert at this surgery and she had only done it twice prior (three times now due to me ^-^). I’m going back to her since she will know best how to work around the mesh implant and all the work that she did.

I’m not looking forward to an ostomy for the sake of having my intestine poking out of my abdomen but I’m excited to stop being sick and dealing with chronic pouchitis.

[severinetherat]

I have a date for surgery!

I got a call from the hospital this afternoon, my surgeon had a cancellation so they offered it to me. The only issue I have is that it’s for next week so very little time to prepare mentally. I know I’ve been a little impatient about getting my stoma removed but now that it’s less than two weeks away, I’m a bit nervous. Not because it’s surgery though, it’s more what comes after; the pooping “normally” and what that entails. I’m sure I’ll be fine but I guess we’ll see.