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Can I ask about a few concerns I have with my UC?

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Ulcerative Colitis
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Posted 10/23/2008 11:51 PM (GMT 0)
This is new for me. I am now having severe nausea while having a bowel movement.  It's so bad, I bring a pail to the toilet with me.

When I am finished(which is small amount of actual stool, but alot of blood), after about 10 minutes the nausea also goes away. 

I am also having stomach pains, but way up in my stomach (for the women here, near where your bra goes around you).  This is also fairly new.

I don't have an appointment until late November.

Also I have found the Asacol, (3-3 times a day) is not doing anything, and hasn't for weeks.  Have you ever just stopped taking it, or maybe even upped the does on your own? 

My doctor was pretty loose about me using my meds, (suppositories, and enemas) as I felt the need, but he said he wanted me on Asacol for 2 years.

Also I am wanting to sleep alot on bad flare days.  I took a 2 1/2 hour nap today, after having plenty of sleep during the night.  I'm thinking that may be the loss of blood?

Is anyone else having these symptoms?  

Thanks all.

Posted 10/24/2008 12:55 AM (GMT 0)
Nausea isn't terribly unusual with UC, but you should let your doctor know about it. It often means your flare is worsening. Also let him know about the Asacol. He may want to increase your dose or even try a different medication if it isn't working for you. I would recommend you use the rectal meds regularly also, as they can be a big help in getting to remission. Taking any prescribed medications faithfully is important. That's the quickest way to feel better, and the quickest way to tell if they aren't working and you need a change in treatment.

Your tiredness is normal if you're flaring. Your body is using a lot of energy fighting the inflammation and making new blood cells. If possible, rest whenever you feel the need.
Posted 10/24/2008 2:33 AM (GMT 0)
Sounds like the Asacol might be making the UC worse. That happened to me. Personal experience here. Are you able to get a hold of your GI this week? That might be a good idea to see weather they can schedule you an earlier appointment. Maybe he/she can get you on better meds if it is the Asacol that is making it worse.
Posted 10/24/2008 2:39 AM (GMT 0)
Thanks Sweetie. I will call them.
Posted 10/24/2008 3:45 AM (GMT 0)
You may be anemic too from the bleeding. That will increase your fatigue. Are you taking iron supplements?

Posted 10/24/2008 2:15 PM (GMT 0)
Not on any iron.

Can I get that myself, or so I need to talk to the doc first?
Posted 10/24/2008 2:20 PM (GMT 0)
Ahh you got some good advice there and I hope you feel better soon!

Gigi1227
Posted 10/24/2008 3:30 PM (GMT 0)
Joylu,

I have all the same symptons as you mentioned. I get the nausia whenever I have a bowel movement or often shortly after eating. I dont get the pain anywhere but near my wasteline though. I've been taking Pentasa which I believe is very similar to asacol but it doesnt seem to be doing much for me either. I go see my doctor this morning though...
Posted 10/24/2008 8:12 PM (GMT 0)
Joylu, I'm on the max dose of asacol (4- 3 times/day). My doc told me that it takes about 3 months to get the full effect from the meds. This seems to be the case for me. Some of us have allergies to asacol or bad reactions or something.

I'm usually fatigued, but it doesn't stop me from being very busy. I just go around tired all the time. I take compazine for nausea. It helps with mild anxiety, too. As for the abdomonal pain, I've never had what you're describing, but I had some pain in my stomach 1 inch above my belly button and I eventually found out I had ulcers! If your stomach feels hard, you should call the doc immediately. It may be a blockage. I ended up in the ER to get that checked out before I knew about the ulcers. THE ER doc told me that my stomach would be hard if it was a blockage.

I hope you're feeling better soon!
Posted 10/25/2008 3:08 PM (GMT 0)
so, i've had UC for 3 yrs. now, and have read the forum occasionally...but i finally joined!  smilewinkgrin you're post, joylu, hit home for me.  i've had the exact same pain as you.  upper stomach, around the bra-line.  actually, sometimes it feels like it goes straight through to my back (same area).  does it ever feel like that for you?  my doc thought i should take something for reflux, and prescribed prilosec (can't remember if that's what it was called - it was about a year ago)...regardless, i had a bad reaction to it and haven't taken it since.  i'm in a flare right now (taking asacol also)...bloody stool, but not really any nausea or pain lately.  i mostly noticed the nausea and pain when i ate something specific, that clearly didn't agree w/ me (for me - some soy products and corn chips - ??).  it happened mostly within my first year of diagnosis...but not really anymore, since i've stopped eating the foods i thought caused it.  i've struggled w/ UC and haven't been completely diligent w/ my meds (b/c of insurance coverage, or lack thereof)...but i wouldn't recommend making any dose changes yourself (i'm guilty of that...never helps)...always talk to your doc.  as far as the pain and nausea, though, i would keep a daily food journal, to help pinpoint if there's any specific foods that are making you feel that way.  hope this helps...

Posted 10/25/2008 6:00 PM (GMT 0)
I've had those same symptoms in the past, needing to go from both ends is the worse feeling imaginable so you have my sympathy for sure. If the Asacol isn't working for you perhaps Colazal or Lialda will work. Personally I prefer the Lialda because it's just once a day. I've been on it for over a year now -- when first diagnosed I was on Asacol, then my GI switched me to Colazal as he said studies had proven it was more effective for UC. When Lialda was 1st approved I asked to be switched to it, but he is conservative about new meds. Once it was a few months out he asked me if I still wanted to switch and I did.

I finally achieved remission with Lialda, Remicade (which let me finally get off Prednisone after two years) and rectal meds (Rowesa or Canasa).

This time last year I was anemic and needed iron injections, since then I have been as religious about taking supplements as I have about my meds.

Hang in there. It can take a really long time to find the right combination of medications that work for you -- it's a drag that UC responds so individually, depending on the patient -- but once you find the right combination things will get under control and all the bad times become just a bad memory.

Don't discount any stressors in your life -- when I was feeling at my worse I was also going through a great deal of stress with a teen daughter going through rehab. It was what it was, and I felt like I was handling it as best I could, but my body told me otherwise. Even before UC diagnosis I always experienced stress in my stomach. I found a simple relaxing hobby, needlepoint, a great stress reliever.

Meesh
Posted 11/4/2008 10:18 PM (GMT 0)

Joylu said...

I am also having stomach pains, but way up in my stomach (for the women here, near where your bra goes around you).  This is also fairly new.

I don't have an appointment until late November.

Also I have found the Asacol, (3-3 times a day) is not doing anything, and hasn't for weeks.  Have you ever just stopped taking it, or maybe even upped the does on your own? 

My doctor was pretty loose about me using my meds, (suppositories, and enemas) as I felt the need, but he said he wanted me on Asacol for 2 years.

Also I am wanting to sleep alot on bad flare days.  I took a 2 1/2 hour nap today, after having plenty of sleep during the night.  I'm thinking that may be the loss of blood?

Is anyone else having these symptoms?  

Thanks all.

This sounds like the pain I was having about 2 weeks ago. It hurt when I would walk...BADLY. It lasted for about a week. My Dr took me off the colozal and it went away. I'm back on it now. All my blood tests were normal. The Dr was worried that it could be pancreititis (sp) but it wasn;t. I've got an appt for a bowel x-ray series next week. After that, they want me to swallow the pill that takes pics of your intestines because my white cell count is low and I cant keep my iron up without supplementation.

 

Good Luck. That back pain is brutal and scary.

Posted 11/5/2008 12:43 AM (GMT 0)
The pain up around the bra area might have more to do with GERD or heartburn, I think it's more likely from those than from UC itself, but it's good you'll be seeing your GI this month then you can mention it to him, even if it goes away before the apointment I'd mention it.


:)
Posted 11/5/2008 12:49 AM (GMT 0)
would a pinchie feeling on the right side of the abdomen possibly indicate progession of procto to pancolitis? or would it be much more noticeable pain? joylu -- hope things improve for you soon as well as the rest of you!
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