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Hope I don't wind up in the hospital again

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Ulcerative Colitis
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Posted 11/3/2009 10:10 PM (GMT 0)
     Two bad days in a row and getting worse..bummer mad .  The doctor called yesterday and told me to just stick with my maintenance meds (colazal and 6MP) and the Cort enemas and Canasa....especially the cort enemas.  I phoned him a few hours ago because I have absolutely NO bowel control now and most of which comes out is blood and mucus and some stool.  The outside skin around my rectum is so inflamed that I can barely pee it burns so bad.  I put Balmex cream on it, which I suppose is ok.  My bum is so sore it even hurts when I sit and the pressure in the rectum is awful!  Sorry, have to vent.  Hubby is working the polls and I am just sitting here worrying that I won't have to go to the hospital again.  Doc wants me to avoid prednisone at least until after my scheduled colonoscopy on the 17th but at this rate I doubt I will make it to the weekend without some relief.
Posted 11/4/2009 1:00 AM (GMT 0)
Hang in there christine... had the same problem with my flair up I'm currently in (finally comin out of it) was in the hospital for a week and when I got home I could barely sit down... unbearable pain.

once your bowels slow it will go away though like mine has... if you have to go the hospital ya gotta go right? no fun but best for you if you need it. I wouldn't avoid prednisone I was your doctor? you can always reschedule a colonoscopy, and with the condition your in right now? doubt your gonna be gettin a cscopy on the 17th, as soon as I have a sign of my flair up I get pumped with prednisone. Startin remicade soon though so hopefully no more flairs for a while!
Posted 11/4/2009 1:18 AM (GMT 0)
Poor thing. I am so sorry. You never fulled recovered from that flare you have been dealing with. I can't believe it has gotten to this point sad Have you tried Calmoseptine for the butt burn? It has helped me in my worst moments. Are you still on 6 Colazal a day? Can you try increasing?
Posted 11/4/2009 1:41 AM (GMT 0)
I would go to the hospital, there is no reason to suffer like that - I know you don't want to go but you sound like you are really really sick and suffering!
Posted 11/4/2009 2:01 AM (GMT 0)
((hugs))
That's all I've got to offer. :(
Posted 11/4/2009 2:26 AM (GMT 0)
I'm so sorry to hear you are suffering so Christine. I can really sympathize as many of us here can. But if you have to go to the hospital, what are they going to do for you that you can't for yourself at home? Maybe give you IV steroids? Sometimes you have to weigh the benefits and setbacks of a hospital visit. I hope you feel better soon...
Posted 11/4/2009 3:14 AM (GMT 0)

Sorry to hear how lousey you are feeling.  Just know that I am thinking of you.  I wish you did not have to go to the hospital but I would probably be there already!!

BIG HUGS!!  ElaineNY

Posted 11/4/2009 3:48 AM (GMT 0)
I empathize! I hate the hospital. But if you have to go... at least you'll get some relief from the pain.
Posted 11/4/2009 5:53 AM (GMT 0)
(((HUGSSSSSS))))!!!!!!
I had uber butt burn today too. It was so painful that I had to waddle when I walked. It was so awful I was about to go find a doughnut to sit on!
Do you have any wet wipes? I find them better to wipe with than TP when I have bad D. I like aquaphor for it too. Just don't put it inside...
Keep yourself hydrated and feel better! Keep us updated!
Posted 11/4/2009 11:27 AM (GMT 0)
     You all are so wonderful.  I wouldn't know what to do without this forum.  Guess I would be terribly depressed. 

     My GI doctor never called me back yesterday.  I suppose since I refused Remicade he has no other suggestions.  He thinks I am just going to hang around on my current meds and the cort enemas (which right now I cannot do) and go under the colonoscopy on the 17th.  Well, I have news for him.  I will NOT go have a colonoscopy in this condition.

     I found something that works for the butt chafing...Balmex.  It is used for diaper rash but works great.  Can I purchase the VSL #3DS over the counter?  I already take Powerdolphilus probiotic three times a day.

     Lookingforthecure....I eat salmon all the time while flaring.  Yes, it does go easy on the gut.  Where do you get psyllium seed powder and what exactly is it?  I was going to try to get to the health food store today for sunflower seed butter, but first I better call to see if they even have it.  Hope I can venture out without having an accident from the UP.

     Right now, I am really considering the Remicade.  Better than living like this.

Posted 11/4/2009 3:27 PM (GMT 0)

Christine - I understand your possible risk for TB if you go on Remicade.  Maybe you could ask for another GI opinion as I did.  My new specialist also told me that Remicade was too much a risk for me BUT I have not had the symptoms you have - not near as severe.  Sometimes the treatment is worth a try with caution.  What I read says to use caution when doing Remicade if exposed to TB.  Maybe they could retest you - we all change over the years.  Can yo believe that right now my biggest problems are from withdrawal of prednisone (aching, etc.) and constipation.  I had to add a little fiber.  I NEVER in my life had constipation!!

Wish you only the BEST!!

ElaineNY

Posted 11/4/2009 3:47 PM (GMT 0)
I am getting down on my knees to pray for you.You have to get this disease in somewhat of remission,if going to the hospital and getting IV-PRED is the answer then go for it.I've been in your shoes i pray you have some peace in your life soon-GOD BLESS and GOOD LUCK 
Posted 11/5/2009 8:35 PM (GMT 0)
Hi Christine,

I can relate and commiserate, because I am in a similiar situation. I don't have a colonoscopy coming up, but I have this flare now for almost 3 months and I take Pred since 2 months and it is not working and my doc doesn't believe me. PREDNISONE IS NOT WORKING FOR ME!!! I am running out of ideas myself ... I don't want to go the Remicade route myself and besides, hubby has a new job and we have a new health insurance with a huge deductible and we cannot afford Remicade. It is not like it's a one time thing.

Wishing you all the best and hopefully you feel better soon. I also wouldn't know what to do at the hospital other than been given IV steroids.

Keep us updated how you're doing!

Posted 11/5/2009 8:50 PM (GMT 0)

Christine, I'm so sorry to hear what you're going through, especially when I last was here I thought you were doing so much better.  UC is a fickle disease.

I had a terrible flare 3 weeks ago and my NP got me in for a colonoscopy Oct. 26th.  I dreaded the prep, but I honestly felt better during the prep than I did before it, maybe because it was cleaning me out?  I know it sound strange. 

I don't exactly understand why your doc won't put you on prednisone... my NP gave me 20 mg. daily about 5 days before so I've been on it awhile. 

I'm sending you vibes and praying for some relief for you.

   

Posted 11/6/2009 3:51 PM (GMT 0)
     Had a bad night.  Today I had my usual blood test and decided to run across the street to my GI's office.  I told the nurse (a very caring person) that something had to be done or else I would wind up in the hospital for sure over the weekend.  Now, I know my doctor (who was  out of that office until Tuesday) doesn't want me back on prednisone (didn't mention I took 20mgm yesterday, but that really didn't do the trick) but I just cannot stand this feeling of pressure in the rectum, inability to hold stool (I should say blood and mucus) in.

     The nurse gave me the PPD test and asked the GI doctor who was in the office what I should do.  He suggested Proctofoam since I cannot even insert the Cort enemas because of the inflammation, and Canasa.  He also recommended I start on 30 mgm of prednisone but my main concern is that the prednisone will give my PPD test a false negative.  Ugh....what a dilemma!  Sorry to vent. idea

Posted 11/6/2009 4:34 PM (GMT 0)

Sounds like a reasonable plan.  The foam is much easier to get in and maintain.

What is a PPD test?  Sorry I don't recognize it. 

Oh, how I hate this DD!!

ElaineNY

Posted 11/6/2009 8:15 PM (GMT 0)
   Elaine...a PPD is the skin patch test for TB.  I took the 30 mgm of prednisone.  At this point I don't care whether it gives the patch test a false negative or not...I just need RELIEF!!!  I cannot believe that none of the pharmacies in this area carry the proctofoam.  They have to order it and they can't get it in till Monday!  Sheesh!  It's not like I live in a little hick town either.  We are in Camden County NJ.
Posted 11/6/2009 8:35 PM (GMT 0)
Sounds like you need to be taking the prednisone, at least 30! Don't wait to get worse.
Sorry you are suffering.
Posted 11/6/2009 10:12 PM (GMT 0)

Later I remembered the PPD!!  I sure hope you get relief and FAST!!  I remember when I was prescribed protofoam and cortifoam our pharmacy could get it next day - I do wonder from where it comes.  We live right outside Syracuse - big city too!

ElaineNY

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