In the hospital/my current story/lessons learned

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Regular Member

Date Joined Apr 2008
Total Posts : 139
   Posted 2/1/2009 2:31 PM (GMT -6)   
I don't post often - I'm more of a lurker in search of information. However, since I'm sitting the hospital right now I thought I would post about why I'm here so that hopefully someone else doesn't end up like me. Just as a note, I was diagnosed with severe pancolitis in Nov 2007 so I was in bad shape to start out a little over a year ago.

I was recovering from my second flare (started on pred again in Nov 08) and got a cold which caused the flare to get significantly worse. I upped my pred to 15mg (per my doc) and was getting better but was still extremely tired although I was losing a lot less blood (note: I had my period when the flare got worse). I was tired and easily fatigued but I chalked that up to UC and being sick. I finally decided that I must be getting anemic and went to the urgent care doc on Thursday night for a blood draw to confirm. I got there and my heart rate was 157 (very bad from what the docs tell me) and they couldn't find a vein. They sent me to the ER. My hemoglobin was 4 (it's supposed to be 12+) basically I was walking around w/ 25% of the blood that was supposed to be in my body.

3 days later I now am hanging out in the hospital with an IV line in my jugular vein (they couldn't get a line in anywhere else, even a PICC(sp?) line - trust me - they tried - even using the ultrasound machine). They still want blood tests - even when you're trying to build your amount back up. I've had a CAT scan, ct, endoscopy, colonoscopy, mri, and chest xray. My colon looks like it's been though a meat grinder/shot with a machine gun throughout (I've got the photos to prove it). I have a blood clot in my pelvis which is evidently caused by my uc being so bad. I'm hooked up to an IV of Heparin while they get Coumadin to build up in my body (to break down the blood clot) so that I can go home. Also, I have to decide if I want to go on Remicade (doc says Imuran isn't an option anymore) or get my colon out.

Lessons learned (so far):
1. There's a difference between being UC tired and being anemic. If you're not sure which it is - get tested - better to know for sure.
2. When you lose blood slowly you can walk around with 25% of the blood in your body that you're supposed to have and not realize how low you are.
3. I really hate being attached to an IV!!! It severely limits my mobility.
4. I need to not chalk things like daily exhaustion up to UC and need to keep a closer eye on my body.
5. Feeling ok and not bleeding doesn't mean that my colon is anywhere close to healed.

If one person gets useful information out of this and saves themselves a trip to the hospital or improves their life it was worth the posting (besides - what else is there to do in this place??) smilewinkgrin
NOTE: Ignore my sig - I haven't updated it since I've entered the hospital. Things are changing on a daily basis and I can't keep up.
BONUSES (NOT) : During my CT scan the docs think they saw a polyp on my now my ob/gyn is involved too. I can't take my birth control pills anymore because of the blood thinners so we have to figure out an alternative that doesn't involve estrogen (have to check w/ the hematologist about progesterone - it may not be approved either).
Ducridr - 34 - female

Diagnosed w/ severe pancolitis 11/20/2007

Asacol - 6 (400mg) 2x/day, Xifaxin 2 (200mg) 2x/day, Prednisone 15mg (started at 40mg Nov 08 - again), multi-vitamin, calcium and vit d supplement, potassium supplement, B-12 supplement, Junel FE (BCP),metamucil capsule (1/day)

Veteran Member

Date Joined Aug 2008
Total Posts : 5975
   Posted 2/1/2009 2:40 PM (GMT -6)   
     WOW, you sure have been through the mill.  I was hospitalized last May for ten days.  My hemoglobin was ok, white count a bit low but my blood pressure was off the wall 210/110.  I was on 30 mgm of prednisone and I credit that for the high blood pressure.  They had a heck of a time finding my veins so put a pic line in.  When admitted my amylase and lipase tests were extremely elevated and the CT scan showed inflamation thoughout the colon.  However, six days later, while still in the hospital, my enzyme levels had returned to normal (probably due to the doctor taking me off the 6MP) and the colonscopy indicated ulcerations only in the rectum.  Go figure!  At the time of my first doctors visit after hospitalization, he put me back on the 6MP but with extra careful monitoring.  I still was in a flare.  I think they got me out of the hospital as fast as possible because they worry about infections.  The flare lasted seven months and I was on prednisone for the entire time.  Been off the prednisone now since Nov 1st and enjoying remission.  I credit this to the multitude of meds, nutritionists advice and trying to maintain calmness.  Hope you are feeling better soon.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/ see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.

Veteran Member

Date Joined Mar 2008
Total Posts : 2855
   Posted 2/1/2009 2:49 PM (GMT -6)   
The only time I was ever hospitalized was because I became severely anemic, it is the worst feeling. Racing heart, too, yikes! I couldn't even follow the intern to climb a set of stairs to get from my docs' office to the ER across the street. Sounds like a good thing you got checked out thoroughly, if it were me I would have resisted all the tests (defensive medicine driving up health care costs, and all that). Anyway, I only had to be in for two nights, I think, it was a long time ago.
I bet that IV line is most uncomfortable thing. So sorry you are going through all this, I wish you some relief soon. Get out of there as soon as you can!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder, then Forte, now a stronger one (50 billion). Doing much better, but still having some bad days. 

Regular Member

Date Joined Apr 2008
Total Posts : 139
   Posted 2/1/2009 7:27 PM (GMT -6)   
Thanks for the well wishes. I feel good now - but they won't let me out b/c the Heparin is an IV. I hope to be out of here in a couple of days. They might be willing to switch me to a shot in place of the Heparin. I figure if I'm going to start Remicade I might as well do it while I'm here. I can't imagine being in for 10 days. I'd go stir crazy.

Peety - I hear you. I couldn't climb stairs w/o sounding like my 77 yr old neighbor that has asthma and emphysema and is on oxygen full time.

They actually wanted to send me to the ER in an ambulance but I think they figured out I wouldn't go that way so they let my DH drive me. The IV line is weird - but I'm used to it - it actually leaves my hands free which is kind of nice plus I have the bonus of not having to look at it (I hate needles/foreign objects in me) plus they can use both arms to draw blood. I tried to avoid the tests but they wanted to figure out where the blood went and make sure that I didn't have bleeding elsewhere. It turned out to be a good thing since they found the blood clot in my pelvis and a possible polyp in my uterus. They did the MRI to confirm the clot after seeing it on the CAT scan. I figure at this point they don't have any tests left to run.
Ducridr - 34 - female

Diagnosed w/ severe pancolitis 11/20/2007

Asacol - 6 (400mg) 2x/day, Xifaxin 2 (200mg) 2x/day, Prednisone 15mg (started at 40mg Nov 08 - again), multi-vitamin, calcium and vit d supplement, potassium supplement, B-12 supplement, Junel FE (BCP),metamucil capsule (1/day)

Regular Member

Date Joined Nov 2008
Total Posts : 23
   Posted 2/2/2009 6:36 AM (GMT -6)   
Thank you very much for sharing your thoughts and feelings. I
Hb of 4??? How were you able to be upright let alone walk?! shocked I can see why you put looking into it off though. If your anemia happened over a relatively short period of time you may have noticed a sudden and dramatic difference and the alarm bell to get help would go off sooner. If blood loss was gradual (say over a few weeks, to a month or more), you were more likely to attribute your fatigue to something else like UC. I hope you won't be hard on yourself anymore. It sounds like you gained some wisdom from this experience and by sharing it with others you spread the wealth that experience can bring. Thank you.

Distal UC (25cm), Nov 2008
Lialda 3.6g, 4.8g/daily
Canasa supp. 1g (for 3 weeks, from Nov. 5),
Prednisone 40 mg/daily 4 week taper (Nov. 17 ‘08), Back up to 15mg Dec. 20, taper 2.5mg/wk. Off Pred Jan 27…knock on wood.
Rowasa: 4g/bedtime Dec. 20 ‘08, 4g/bed time Jan 19 ‘09
Procotofoam: 1 application/bedtime, Jan 20 ‘09

Regular Member

Date Joined Oct 2006
Total Posts : 90
   Posted 2/2/2009 9:43 AM (GMT -6)   
Ducridr - I'm so sorry you are going through all of this. I know the hospital is not a fun place to be, but hopefully you will get the much need rest and some medication to help get you back on your feet so to speak.

Thank you for sharing your story and reminding us all of these things that could possibly happen to us. When I was diagnosed in '93, I had just graduating from high school. I had been bleeding small amount of blood in the toilet for a long time, but was either too embarrassed or naive to say something to my parents and let it go on for months. Over the entire summer I slowly got weaker and couldn't figure out why. Finally, the night before I'm to leave for college I had a breakdown and my parents took me to the doctor the next day. The first thing my blood test showed was that I was severly anemic. Can't remember what the exact number was, but will always remember the doctor commenting "I'm surprised she can walk". But like you said when it happens gradually you body slowly adjusts and you try to push your way through it thinking you're just tired when in fact it's your UC that is causing everything.

I hope you start to feel better really soon.
Diagnosed UC - 1993
33 year old female, 31 weeks pregnant with second child

Current Meds:
6-MP - 75 Mgs
Colazal (3 pills two times a day)
Folic Acid, Prenatal, Omega 3 Fatty Acid (2 capsules)

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