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Ulcerative Colitis
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Posted 3/16/2011 1:40 PM (GMT -5)
In the 11 years I've had UC, I've never been admitted. Three years ago, one GI asked if I wanted to be admitted, and I said no, and instead took some antispasmodic pills along with everything else, and eventually got better.  However, I've been flaring on and off consistently for the last 3 years.

I've been back on prednisone for over 10 days now at 40mg and seeing very minimal improvement.  Spoke to my doc last night and she asked if I wanted to be admitted for IV steriod, or just wait one more day and come in for a cat scan.

My cat scan is tomorrow AM, and now I'm waiting to hear back from the doc if I should be admitted, since it's been almost 24 hours with no improvement. 

I'm going BM about 15 times a day, blood, liquidy, and I have stabbing cramps that come and go throughout the day. Also have lower back pain from the flare. I've been eating a low residue diet for about a month now and my stools are still not very formed.

My colonoscopy is scheduled for next Thursday and I'm supposed to start Imuran after. I am only on prednisone for now, Lialda does not work for me anymore, nor does Canasa.

I have a high tolerance for pain, and I guess my question is, when do you know when you should be admitted?

Thank you

Posted 3/16/2011 1:45 PM (GMT -5)
Based on your symptoms and lack of improvement from the prednisone, I'd say it's time to be admitted.  Hopefully the IV steroids will calm the inflammation down. 
Posted 3/16/2011 2:15 PM (GMT -5)
I've had recent success with IV steroids...they worked within a couple hours. If you are admitted, I'm sure they'll do your colonoscopy while you're in the hospital. That's what they've done with me in the past. You'll get plenty of fluids and meds into your IV which for me has worked wonders. They'll more than likely put you on a liquid diet once admitted. The last time I was admitted, I was having loose BM's, a good amount of blood and terrible cramping and fatigue. They also checked my blood every day to monitor my hemoglobin and iron levels. I was admitted for 6 days...after which I was 100x better than when I went in. I was then put on a low residue diet for a couple weeks following.
Posted 3/16/2011 3:16 PM (GMT -5)
I am the same way, never know when I should go in to the hospital. However, both times I finally went in they said I should have come in 2 weeks before I did! If you are questioning it, you should probably just go. Then again, if you can stay healthy enough... the hospital is never a fun place to be and you do expose yourself to all the possible infections roaming the hospital. The most I've ever gotten from a hospital stay is rehydration and blood transfusion, steroids don't work on me.
Posted 3/16/2011 3:31 PM (GMT -5)
turtle521,
It does sound like you need a more aggressive treatment than 40 mg of oral steroids. A hospital stay can mean a shorter time to remission.
The other possibility is to have iv steroids at an infusion center. It is much less expensive than a hospital stay and you get to sleep in your own bed.
I hope you feel better quickly.
SZm
Posted 3/16/2011 3:32 PM (GMT -5)

Thank you for your replies!  I spoke to my doctor and she wants me admitted tomorrow immediately after my ct scan.  So one night tonight at home to pack and eat a proper meal and spend time with my husband and pup, then off to the hospital - possibly up to 7 days she said.  I hope it's not that long! But I'm ready to get better and I really hope the IV steriods work. 

Thanks, I'll check in later if I get internet at the hospital. :)

Posted 3/16/2011 3:36 PM (GMT -5)
Bring your own toilet paper!!! If your hospital is like mine, it's like cardboard! I had people bring me a few rolls as well as baby wipes
Posted 3/16/2011 5:43 PM (GMT -5)
Good luck at the hospital and hopefully they will get you back on track to feeling better! Most hospitals have free Wi-Fi so you should be good to go. Please keep us updated.
Posted 3/16/2011 5:51 PM (GMT -5)
I was admitted several times over the years in the battle with my UC. Basically I knew it was time to go to the hospital when the bleeding was really bad, I could barely get out of bed, shortness of breath (from low blood count), and just the general feeling like you cannot do anything without it feeling like a huge chore. I have a big tolerance to pain too so it was never the pain that made me go to the hosptial, just everything else.
Posted 3/18/2011 7:25 AM (GMT -5)
I was finally admitted last night at 5pm. My cat scan just confirmed I had UC. My hemoglobin was 5.7 so had two units of blood over night. Feeling the same today, but last night wasn't too bad. No food, just iv fluids, and had one dose of iv steroids.

Waiting for my doc to do rounds to see what's next. Wifi is finally set up so no longer bored! :) thanks everyone!
Posted 3/18/2011 7:46 AM (GMT -5)
turtle521:

I am glad you are receiving care and that your are getting to the bottom of this.  Just cautionary note.  I have had uc for about 20 years and about 3-4 years ago I had what you described.  Stabbing, cramping pain with a dozen bloody bowel movements.  I eventually went to the ER and had blood drawn and had a ct scan of my colon.  It showed an inflammed colon and a Hg of about 8.  They wanted to admit me, I had colo-rectal surgeons hovering around me.  I said no at that point because I was going to see my gi doc anyways after 2 days and I didn't know then what I know now. 

The point of my story is that I got on imuran and it saved my colon and I am doing very well with my colitis now.  My last colonscopy showed an almost completely healed colon.  If I went with my hospital friends I wound'nt even have a colon now.  To be fair to them, the surgeon said I had only used asa meds and prednisone.  He suggested I try the other meds first and see if it works for me.  Only then would he consider surgery. 

All I am saying is be patient and don't make any decisions in a rash way.  It sounds like you have a good head on your shoulders.  Good luck with this and please keep us informed.

MyUC

Posted 3/18/2011 7:49 AM (GMT -5)
Thanks myuc! When pain was bad I thought surgery would be best and just get it done since I'm young. But I've decided to try imuran first and see how that does. If it doesn't work then I'll seriously consider surgery.
Posted 3/18/2011 7:56 AM (GMT -5)

Your welcome.  Again be patient.  Days and weeks can seem extremely long when your in a hospital setting and docs are swarming around you.  Also going to the bathroom 15+/day doesn't help either.  Imuran works slowly.  It can take 3+months to kick in although mine helpe me within 1-2 months.  I am not against surgery in any way because it will cure colitis but for me I would rather try the meds first.  So far so good.  I now go once every 1-2 days.  Also no side effects what so ever from the Imuran. 

Keep the faith turtle521.  Besides your immediate family and friends you have dozens of supportive people here on this site rooting for you.  Keep your chin up! smilewinkgrin

Posted 3/18/2011 12:37 PM (GMT -5)
It seems better that you were admitted considering your state and you not able to use the 5ASA meds.

Keep us posted as to what's happening....

quincy
Posted 3/18/2011 4:50 PM (GMT -5)
Had another unit of blood today. They are going to test my levels tonight twice and see if I can maintain it. Less urgency, but I still have blood. Started low residue diet today at 2! I was so hungry. No fevers. Doc said I might be discharged tomorrow but nurse says I need to stop bleeding first. Not sure if that will happen by tomorrow. Had some visitors today so it was nice and helps pass the time.

I already got my steroid iv today at 10 so won't get another until tomorrow. I feel more energetic and myself, and hoping I will have no pain and urgency tonight when its usually the worst.
Posted 3/18/2011 5:48 PM (GMT -5)
We're rooting for you.... keep us posted!
Posted 3/18/2011 11:19 PM (GMT -5)
Hi Turtle
It almost sounds like my story back in 2004. I had c-diff on top of the diagnosis of UC. This was the beginning of my UC story.

Yes, as hard it is to be in the hospital, just hang in there! The IV meds will definitely help especially with spasms, relaxation. I was in the hospital for 1 week back then and that worked for me, remission for 4 years after that with only asacol. The blood transfusion also helped me as I had lost a lot of blood also. So take it easy, look at it this way, at least you're not in isolation like I was!
Posted 3/18/2011 11:58 PM (GMT -5)
Turtle

I’m glad you’re being taken care of. about the toilet paper, while I was in the hospital I asked for wet wipes. They gave me soft disposable towels that you wet. It was like an enormous baby wipe so we cut them in half. It was much better than using toilet paper.

I hope you continue to feel better!
Posted 3/19/2011 12:51 PM (GMT -5)
Hi Turtle like Kat Kat I had C-diff on top of the UC so the 15X a day is familier. Make sure to use cottenelle wipes also when I was in (19 days) they gave me a spray that I used when I cleaned myself. regular tp will leave you sore.
Posted 3/19/2011 1:14 PM (GMT -5)
Or what I use when I have the d's, is vaseline on the toilet paper before wiping each time. That really helped and of course, softer t p.
Posted 3/19/2011 3:00 PM (GMT -5)
So in here, day three, and 3 steroid injections and 3 units of blood later, my symptoms are the same. My hemoglobin level is back up and I don't need blood anymore, but I am still bleeding with each bm. I got to eat low residue diet for 2 meals, then back on clear liquids today. The doc realized the steroid is not working for me either at all or just very slowly, so my colonoscopy is moved up to monday. If the steroids kick in and I stop bleeding and having pain I can go home tomorrow and come back for the scope, but if the steroids really isn't working, I'm here until the scope.

The doc is thinking rowasa for immediate treatment after the scope, but asacol and lialda doesn't work on me, so I'm thinking rowasa might not either. My main GI ruled out rowasa last week but her covering Gi seems to think it'll work. He only comes in and meets me for 5 minutes a day, so Im not sure how much he's considering in terms of my past medications and their effectiveness. I'm glad I'm at least getting the scope sooner so he can see for himself. I'm scared that steroid is not working at all because Ill need somthing else while the imuran kicks in.

My body is okay during the day (the pain and frequent BMs start at around 6pm until 10am) so right now I feel like it's so silly for me to be home. I have to keep reminding myself that I'm not better yet!

Thanks for all the tips and checking in!
Posted 3/19/2011 6:31 PM (GMT -5)
I feel for you Turtle521. I was in a similar situation last September. Had a severe attack of UC and could not stay hydrated (suprisingly, never needed any transfusions). Like you, my symptoms were the worst from 6 p.m. until morning. My GI scheduled an emergency colonoscopy to see what was going on and when they saw how bad my colon was I immediately got admitted to the hospital. There I was put on high doses of IV sterroid (equivilant to 80 mg of prednisone) and put on Imuran. After a week, nothing was working. I was losing weight like a rock and could not keep myself hydrated without an I.V. They decided to quit the Imuran as it was too slow-acting and recommended I try Remicade. If that didn't work in a week, they were sending me in for emergency surgery as I was declining very quickly and would never have been able to stay hydrated on my own. Fortunately the Remicade worked at around day 6 and I was finally let out of the hospital after 14 days. It was pretty sureal being in there that long... I sometimes wondered if I would ever get to leave. I had only expected to be in for a few days at first.

As it turns out, I had a severe delayed reaction to Remicade a few days after leaving the hospital and couldn't get any more infusions, but at least it bought me some time and held me in remission until I could get into surgery much stronger and with a great surgeon. I was never that psyched about the biologic drugs and would have leaned towards surgery anyway. I opted for a permanent ileostomy as the outcome is a little more predictable than the J-pouch and I am super happy with the way everything turned out. I am four months post-op and loving life again. I feel better than I have in years and am not having any issues with having a ostomy pouch at all. I am back to work as a park ranger naturalist where I lead nature programs for the public... in fact, I led a four hour hike/program today and never once thought about the bathroom or my ostomy pouch. It was awesome! I am just beginning to do many of the sports I love (hiking, snowboarding, biking) again.

Take it day by day and just see what happens. While you are in the hospital, research all your options so that if something unexpected comes up, you will be prepared with a lot of knowledge so you can make good decisions. I was on this site pretty much non-stop while in the hospital and spent a lot of time reading up on the different types of surgeries and drugs. I dug around on the internet to find people who had surgery for UC and also liked the same outdoor sports as me to get their take on things. I felt like this little research unit and all the nurses teased me because I was always on my computer:) I also had a friend with an ileostomy come visit me in the hospital. She told me about her experiences, showed me her appliance and aleviated a lot of my fears. I also called someone my husband knows who has a J-pouch so I could hear about her experiences... again, just to get as much info as possible.

Take care and good luck!
Posted 3/19/2011 10:42 PM (GMT -5)
Asacol and lialda made me very ill but rowasa enemas work great for me. I can take 50 mg of Imuran but beyond that I have an allergic reaction. I am still in bed with a pain level around 7, down from an 8.
What dose of steroid are you on? During really bad flares, it has taken up to a week for 60 mg steroid to work. When the steroid didn't work after a week, I was put on cyclosporine. That worked very quickly. There are other medicines they can use until you are in remission.
Crossing my fingers for you.
SZm
Posted 3/20/2011 3:54 PM (GMT -5)
Backing up a little....why did you have that CT scan??

I never had one in 25 years. Did you understand why it was considered necessary?

They are so expensive and I wonder whether it really contributed to your care, or just padded the bill.

I'm one who would avoid going into the hospital, unless I needed surgery. I'm not convinced they can doing anything there I can't do at home. Seeing a doctor five minutes a day does not seem worth the discomfort of being away from home and my own bathroom. If I were told I couldn't have gone home until the bleeding stopped, or until stools were formed, I would have been in the hospital for 20 years!

Sorry, I'm always a little grumpy when it comes to these issues!

I do hope you are feeling better.

Posted 3/20/2011 4:22 PM (GMT -5)
Petty- I'm not sure why I had the ct scan. I think they were confirming for ulcerative colitis and possibly any obstruction. My GI recommended it prior to even hospital admittance since my colonoscopy was scheduled for next week.

I'm glad I came into the hospital- I am the same way, I don't feel the need to go to the hospital, but obviously I can't give myself iv steroids and also my hemoglobin was so slow it would've been dangerous for me not to have received transfusions.

The plan for now is colonscopy tomorrow and send me home with rowasa and start wean of steroids since it's not working. I'm so excited to eat! This gallon prep of golytely is not fun.
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