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Crohn's Disease Forum » Your Story » My story of Ischemic Colitis/ IBD/ Crohn's


09-21-2013, 12:34 PM   #1
Cupcake88
 
Join Date: Sep 2013
Location: Omaha, Nebraska
My story of Ischemic Colitis/ IBD/ Crohn's

Hi,
I am new in this group and I really want to tell my story, it is personal but i feel in the Crohn's community we need those REAL stories.
So here it goes!
My name is Krysty and I was 21 in 2009 and I had excruciating stomach pain. It felt like I got punched in the stomach and it hurt for days, then weeks. I was puking and had no energy. this was out of the blue.

INFO!!My normal bowel movements is that I am constantly constipated. I only have a bowel movement once a week and sometimes when I go it hurts a lot with cramping and blood and it's hard. also I will sometimes go and it will be quarter sized little balls like one or 2. I used to tell people I pooped like a rabbit and that I didn't poop but it was always like that so I never tried to fix it except the occasional over the counter medications.

So! my stomach hurts for weeks, I'm overly constipated, can't eat, puking and doubled over in pain and I have no energy I just want to sleep all day . I went to the doctor and they told me I had acid reflux. So they gave me ppt inhibitor medicine and sent me home. I hadn't worked in about a week so on this new medication I went to work. It was still bothering me so the doctor did a test and I had an ulcer. So they gave me different medicine and I went to work. At work my stomach cramped up and hurt so bad I laid down on the floor and passed out. Luckily, I worked as a CNA on a cancer floor in a Hospital. So I was laying on the floor half in and out of the women's restroom at 11 at night (I worked late) screaming for help! My stomach was all cramped up and it felt like someone was squeezing my intestines. It felt like I might have diarrhea, but I couldn't go. I was nauseated and puking.

So I went downstairs to the ER and they did an EGD scope and a CT scan and lots of other tests. I waited hours and they told me I had multiple ulcers and should see a GI doctor and they wanted to do a colonoscopy in the morning and I had to drink a gallon of nasty liquid all night until I got diarrhea and pooed in my hospital bed.

So i went to the colonoscopy the next day and i woke up in so much pain of bloating and gas and cramping.

Then they told me they found scar tissue in my colon and that I had suffered an ischemic attack which is where the blood gets shut off to that area and it basically kills that area. A "colon stroke".
They told me it would heal in a few weeks but my colon had open sores orrisons and corrosions (open wounds in my intestines)

So I went home to rest and see my new GI doctor in a few days. I also left with a ton of pain medication. like crazy drugs that make me tired, high or pass out. I began with vicodin and diluaded (which made me forget things I did)

So I go to GI, she says you may recover quickly or you may have Crohn's Disease. So they take a biopsy. And I was not diagnosed with Crohn's. So she put me on IBD medicine AMITIZA and stomach spasm medicine and ACID REFLUX MEDICINE and ULCER MEDICINE and PAIN KILLERS. She also took me off my birth control (because it can cause strokes and i had an ischemic attack) she also put me on prednizone a steroid to treat the CROHN'S that she thought I had

So a month later PAIN PAIN PAIN crying go to ER in middle of the night and they give me MORPHINE and send me home and I puke in the walgreens parking lot trying to get my medicine.

So a week later it still HURTS and I go to GI and we do Colonoscopy #2 and we find another ISCHEMIC ATTACK

After these attacks I can't eat, can't leave my bed, I'm taking too much pain medication but the pain is not going away.

I have 2 more attacks after that. One lands me in the hospital for a week. Because I need IV fluids and cant keep my body going and do several tests. I have had 4 ischemic attacks and been diagnosed with chronic ischemic colitis and IBD.

I go to doctors and more doctors and have tests and medications. they took me off steroids because none of my biopsies show CROHN'S.

So i mentioned my constipation earlier! one of my doctors had me swallow radioactive pills that could be seen in X RAYS and check their movement through my body. I came back in one week and had not passed them , but he said they moved so that was good. Given more IBD medication to get my stomach on a routine.

so after another couple week long stays in the hospital and 9 colonoscopies in less then a year I was pissed and sick and could not have a normal life. I has been checked for everything. It was particularly disturbing when I had 3 cancer scans. I went to the ER like 2X a month for a year for pain, dehydration from non-stop vomiting, and when my white blood cell counts were so high they could tell i was having an ischemic attack. I saw a vascular surgeon and someone also wanted to do "experimental" surgery on me to see if they could fix it.

so then there was the emotional battle. all the Dr's told me I was stressed and depressed and Sure I was, but normally not really. I was convinced that the illness was causing my depression and to me it made me feel like they were saying my illness was not real.

so over the course of a year i had 6 ischemic attacks and 3 more the next winter and spring. I was sick on holidays, my birthday, i got released from the hospital a day before my 22nd birthday on my 8th attack.

Then i kept going to dr's but not the ER because the ER can't help unless you have a broken bone or get shot. In my case I get Vicodin and an inconclusive colonscopy.

So i just dealt with it. went on with my life and laid on the couch every night after work.

I have had many more ischemic attacks and since they can't be treated went untreated.

My stomach was so torn up I couldn't eat. for a solid 2 years I could not eat veggies they are so hard to digest it felt like someone was scraping my intestines with a knife and I would cramp so bad. I drank ensure daily and ate applesauce and soup and laid in bed.
I've been gluten free for 2.5 years b/c i feel that gluten is a trigger food. I went to a therapist once and thought it was dumb. I didn't need relaxation methods I needed a cure. I never got a cure.

eventually i came to an emotional point when i was "dealing with it" that i decided to live my life again but that was hard. I was so sick and didn't "look sick" I couldn't tell people that I felt bad b/c they would worry. my mom would rush me to the hospital so I didn't tell her.

then one day my mom was like "wow I'm so glad you're ok now" and i began to cry and I was like no I'm not and told her everything.

so this story is crazy and un organized but I eventually called it Crohn's on my own because Crohn's is an auto immune disease where your body attacks your colon. and i don't doubt I have it even though it's un diagnosed.

I joined the CCFA and met a girl with crohns and now were best friends.

I have problems still and think i had a flare up/ ischemic attack a few months ago and did not seek treatment.

when I decided to "move on" and "deal with it" i began to go biking for exersise. I got an old bike from the goodwill and tried to clear my mind. the next spring i fell off my bike and broke ;my ankle that required surgery. (life hates me right?) then it healed I biked again and I began other exercise. I ran and I ran my first 5k in oct of 2011, in 2012 i ran my first half marathon. i have run over 400 miles in 2 years with my Crohn's. I have completed a triathlon. I went back to college. I got a job. I fought hard. I fight every day. Sometimes it hurts to run, sometimes it feels good.

i tried to go back on anti depressants for my stomach issues about 2 months ago and i switched 3 times and gave up. it just felt like something was messing with my head so idk I guess i'm depressed and stressed but i feel like i'm at the normal levels for that.

I'd like to hear your responses to my ramblings and your stories.
09-21-2013, 03:52 PM   #2
prplkow
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Join Date: Jul 2012
Location: Los Gatos, California
Welcome to the forum. Thank you for sharing your story. Sounds like you have gone through a lot! This is the place to share our stories, give each other support and even learn by hearing what others have done and gone through, so you are in the right place.
09-24-2013, 11:43 AM   #3
Mountaingem
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Join Date: Jan 2010
Location: California

My Support Groups:
So glad to have you with us, welcome to the forum Wow, you've been through so much! The antidepressants they give you with Crohn's such as amitriptyline or nortriptyline, while not a cure, typically can help with the pain in the bowel as well as your mental outlook. It takes time for them to work though, at least six weeks of daily use.

Admittedly I'm not familiar with the term ischemic attack when speaking of Crohn's so forgive me if this question doesn't apply, but are you on any daily medications for Crohn's or maybe a biologic? These can help with the day to day pain and the flares as well. Also, I wanted to mention that Vicodin is very irritating to the stomach and bowel, perhaps your doctor could put you on another pain med that isn't quite so harsh.

It's always really tough in the beginning to navigate which foods you are able to tolerate, keeping a list helped me not to suffer unnecessarily, since I tended to forget which things made me sick. Baby food is also helpful when your tummy just won't tolerate regular food. There are many threads on this site that discuss foods that hurt/heal so it might be worth checking those out.

I hope you are able to find some more permanent means to control those attacks. Best wishes to you, and please feel free to pm me any time you like.
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