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Crohn's Disease Forum » Your Story » Currently in hospital, first ever pancolitis, no diagnosis yet...what's wrong...


07-24-2017, 11:23 PM   #1
Equinista
 
Join Date: Jul 2017
Location: Fort Pierce, Florida
Currently in hospital, first ever pancolitis, no diagnosis yet...what's wrong...

This is quite long, my apologies.

Hi. I'm Jenn. I'm 29. And until last Monday i had never had pancolitis or anything like this happen to me.

I'm poor, i don't work due to severe social anxiety disorser and my fiance makes barely enough to support us and we live with my mom. I am unable to afford a doctor myself. The ER and hospital are where i go for treatment.

Last Sunday i woke up to sharp gas like pains in my lower abdomen that lead to diarrhea. It got worse thru the day with more frequent trips to the bathroom....i bought some peptobismol, took ibuprofen, and went to bed early/around 8pm...at 1am last Monday i awoke in horrible pain and was up the rest of the night, using the bathroom every 5 to 10 minutes, sometimes as soon as i left the bathroom i had to turn around and go right back in. I took extremely hot baths one right after the other, as soon as the hot water heater was hot again.
By 5am i was also having nausea and vomiting a few times. 8am Monday i went to the ER, as i could not keep any liquids down and had no appetite and was in extreme pain.

I was given IV fluids and IV morphine, which helped with my pain. They did bloodwork and took a stool sample, they wanted to test me for C Diff as a few months before i was hospitalized for MRSA in my face and on powerful antibiotics.
They sent me home with a script for bentyl (unable to afford to get it filled though) before my c diff results came back. I was feeling slightly better thanks to the morphine and went home and slept the rest of monday away.
My c diff results came back tuesday and it was negative. They also tested for rotoviris, e.coli, salmonella, parasites, and other things, all negative. I just had a slightly elevated White blood cell count in my stool. All my bloodwork came back fine also.

Tuesday i felt somewhat better, even ate food as normal, and was able to keep things down, though i still had diarrhea, it was no where bear as frequent.

Fast forward to 2am Thursday. I again awoke in severe lower abdominal pain that turned into diarrhea every 5 minutes, not an exaggeration. By 5am, what was coming out of my was a dark emerald green dead animal smelling slimey mucous, that has never happened to me. I was now also in the worst pain i had ever felt in my entire life, and again, ive had MRSA in my face 2 different times this year a month apart and i was in the hospital a week each time, and i was attacked by a dog when i was 11 on my left arm so badly i nearly bled to death and lost a golf ball size of flesh on my arm...this abdominal pain was worse than all of that, combined!

At 7am Thursday i went back to the hospital. This time they gave iv fluids, gave morphine, did more bloodwork AND a CT Scan this time.

My CT scan showed me to have PANCOLITIS. .....a term i had never heard before. The doctor told me it basically means my entire large intestines is swollen.

.......
This sounded so scary to me.
I was then told i was being sent home with a script for Flagyl, bentyl and a medicine for nausea. And that i needed an appointment with a specialist, a gastroenterologist, because i most likely needed a colonoscopy. I said i cqn never afford that! They basically said thats not there problem.....and sent me home.

At home my misery continued. I ended up being awake all night, i ended up making a pallet on the bathroom floor...and by 5am Friday i was by far the worst yet. I had not been able to eat anything since Wednesday and the only fluids i had waa via IV at the hospital thursday morning. I vomited every sip of water i tried.

I was so sick, in so much pain, so weak and dehydrated by 6am Friday, i layed down on the living room carpet and was unable to get back up, my fiance called 911.

I was rushed to the hospital with severe dehydration and started on iv fluids again, and again on IV morphine. Then taken right back for a CT scan, which still showed the pancolitis.

THIS TIME thankfully they admitted me and i was taken to a room.

Around noon a gastroenterologist came to see me. He asked me many questions about my symptoms. He felt i could have c diff, and collected another stool sample from me. That came back negative, again.

Sunday evening i was told that Monday the gastroenterologist had scheduled me for a colonoscopy (this was scary, i never had one)...i was scared but also excited, i could get this needed procedure done, something i could otherwise not afford.

I was put to sleep for the colonoscopy thankfully. He took a biopsy during the procedure. He sent some of it to be tested for c diff, which still came back negative. I guess its safe to say i do not have C Diff.

No other results have come back yet, so i dont know if i could have Crohn's or UC and unfortunately i have not seen the gastroenterologist since the colonoscopy.

Im still here in the hospital. I am on 6mgs of IV morphine every 4 hours. Im still in pain but not as severe, still have diarrhea but now only a few times an hour and a more normal brown color. I have also had a low grade fever from 99 to 100 since being here.

Im also on a pill medication celled Delzicol they bring me 2 pills several times a day, but im unsure of dosage.

I hope to see the gastroenterologist again soon so i can tell him i have been getting severe canker sores in my mouth the last several years with more frequency and larger and more painful. I am always extremely tired and run down feeling. I have constant aches and pains also.some days are worse than others.

Also, i am getting what may be another MRSA bump in my face that started the day after i got in here. they ran an HIV test on me also cause they don't understand why im having these infections, but that came back negative also, which i expected, but is still a relief.

What does this sound like to yall? Im worried. Im scared. I never want to go through this again. I would not wish this pain on my worst enemy.
07-25-2017, 12:58 AM   #2
Guerrero
Senior Member
 
Join Date: May 2017

My Support Groups:
Hi equinista,
I'm sorry you feel bad. I'm not able to tell you what you have, but i'm sure you very close to receive answers from the doctors and got the right therapy to feel better soon.
07-25-2017, 10:53 PM   #3
Lady Organic
Forum Monitor
 
Lady Organic's Avatar
Hello Equinista ,
Im so sorry for the troubles you are going through right now and hopefully you will see the GI dr soon. Do not accept to be discharded without seeing him. The endoscopy nurses should give you access to the dr report also if you ask for it in the meantime. It is your right to know what the dr's opinion is about your case. This sounds like you possibly have either CD or UC unfortunately. Pancolitis mean inflammation of the entire colon.
Recurrent mouth ulcers can be a initial sign of CD.
Please keep in touch here with the forum, there shall always be someone around to answer your questions or to give support.
__________________
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
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