Day 13 of UC diagnosis

As my subject states, I am on day 13 of my new UC life.  I had been having symptons the previous 6 months, nothing serious, more annoying than anything else.  Runny stools were the biggest problem but it really was not that big of a deal or problem to my life and never any blood.  I really only went to the doctor after I did some research and realized you should not have runny stools for any length of time.

So I did the colonoscopy and the Dr said I had UC.  Ok.  Nothing changed in my life except a name to the 'problem.' My stools were actually better leading up to the colonoscopy and after too.  My Dr started me on Mesalamine 2400mg x2 twice a day to "help," although after spending the last week reading about UC I had to have been well below mild, so I am not sure what he was helping with the highest dose possible.  The first five days were fine, again nothing had changed except the drug introduction in my body.  On 11 Dec my personal hell began.

Since late Saturday night I have gone to the bathroom on average 20 times a day (keeping a journal) and after the first day all my stools are filled with blood.  My head hurts like nothing I have experienced and I can't sit for any amount of time becuase my back is killing me.  To top it all off I have not slept for more than a hour at a time because I am either going to the bathroom, laying in bed with the chills following the bathroom or feeling like I need to go to the bathroom.

I have called my Dr but he said to stay the course.  Here is how I see it: After Mesalamine I have not been able to leave my home and my life has done a 180 degree turn the wrong way.

Being new to this disease, a bit agitated and unable to get a hold of my Dr I am looking for some guidance or experience.  I assume I am not the only one with this issue, but my life was great prior to the drugs.

Thanks

Hello & Welcome,

Some people can have adverse reactions to mesalamine. I wonder if this is your situation or if it's just coincidence. Maybe it's time for a 2nd opinion? It sounds like your symptoms were mild, 4800mg is a lot for someone with mild symptoms. I was in a fairly severe flare and my GI put me on 3600mg and I was able to manage my UC on that dose for over a year. Now things have progressed to the point where mesalamine doesn't seem to help me too much...

I am sorry you're feeling bad. I hope you get some relief soon!

Thank you for the replies. I am trying to keep and open mind and think this may have happened regardless of the Dr or medication I was on, but it doesn't mean my Dr is probably removed from the X-Mas card list.

I actually have no idea how bad my UC is what parts of my colon are affected. I have been on prednisone before and it is a drug I really do not wish to ever take again. It was over three years ago, but I don't ever remember sleeping that much while on it. My Dr told me the minimum the day of my procedure, but gave me phone numbers and web address for CCF groups and sites. I honestly don't remeber talking about it, but I do remember him saying it was not that bad. He even told my wife, who is the director of patient access at the hospital I had it down at, that it wasn't that bad and I would be fine. His body language really put me at ease, but I am unable to disscuss with any intelligence my own disease.

I had thought I am going about this all wrong and am not managing my expectations very well on what UC really means. However, looking at my journal since Saturday I don't the current course is working all that much.

Again thanks

Mesalamine gave me horrible D.

I'm wondering if you are having a reaction to the mesalamine. I've had reactions to certain medications and my doctor has worked with me to find what works...... maybe you should go for a second opinion about your meds.

Again thanks everyone for the comments and ideas, it is a lot to take in. My Dr is a GI who works for MN Gastro, plus I know his son has very servere Crohns too. Since my Dr did not get back to me yesterday, today is the line in the sand but either way I am also setting an appt for a 2nd opinion. The problem is I just have to be able to make the drive. Considering the Mayo Clinic is only 80 miles away and they did wonders for my wife during her pregnancy and my daughter during the birth, I might as well go with the best.

Again thanks.

I was diagnosed with UC after a routine colonoscopy. I had mild symptoms and I really had no understanding how serious IBD is. Doc prescribed colasol which gave me cold sweats and made me sick as a dog. So I stopped taking it and everything seemed fine.

Then about a year later I had my first flare and everything hit the fan. After a few weeks I stumbled into remission without mesalamines and I have been maintaining remission ever since thru diet and natural supplements. By watching my diet even mild symptoms have disappeared.

Sounds like you are also allergic to 5-ASA.

Thanks again. I have lots of time to read these posts since I can't really go anywhere.

Have an appt tomorrow morning with Dr. His orders to also completely stop meds today. I am going with an allergic reaction based on the drug sheet and all the side-effects listd which I have. Otherwise it is the biggest coinicidence in modern medicine. The cramps have literally brought me to my knees and tears to my eyes.

I have to say since your diagnosis was Mild UC I would avoid prednisone at all costs. It really sounds like what everyone else has already said, mesalamine allergy. My suggestion would be to cut back on the mesalamine. Also, are you on any kind supplements or probiotics ? What did your second opinion say ?


From Medicenet ~
Mesalamine may cause an acute intolerance syndrome that resembles a flare of inflammatory bowel disease. Symptoms include cramping, acute abdominal pain, and bloody diarrhea. Fever, headache, itching, and rash also may occur. Symptoms usually subside once mesalamine is discontinued. Since mesalamine is related chemically to aspirin, individuals who are allergic to aspirin should not take mesalamine.

After much military analytical thinking, which I knew would come in handy in something else, and talking with the doctor (out of Plymouth), I have started prednisone: 40mg for a wk, 30mg, 20, 15...Done. I needed to get back to the baseline I had before taking mesalamine, in order to start a better treatment. Since I was so mild before preferrably one without many drugs if any.

Other issues: Yesterday I admitted myself into the ER from the rectum cramps. After two straight days of them they had gotten so bad when they came on they would bring me to my knees, then tears and the worst pain I have ever felt, all the while trying to get to or being on the toilet. After looking at my journal, they were happening every 30 minutes, getting worse, and I was not recoverying inbetween the bouts. It is the only time in my life I have hit my limit. Plus, I had an upper respiratory issue too, which was confirmed this morning with an XR and fluid in my lungs. The bug may have been a factor in the flare which is why I am taking metronidazole, so anyone not invited to the party within my inerts is shown the door. Plus I am taking levaquin to help clean my lungs.

The perfect storm of hell which may all have been independent of each other, or may have made the UC worse or even caused the UC flare. No way to know except treat each thing independently and get back to 'normal' before the flare to start over.

Make sure you are taking appropriate doses of your maintenance orals and rectal meds. You need as much backup as possible to carry you through the prednisone taper. Prednisone turned off diarrhea and pain like a faucet. But I had bleeding and diarrhea whenever I dropped below 10 mg. and kept having to bounce back up. But the last time I had enough arsenal to carry me off pred without return of symptoms.

Good luck. No one should suffer the way you have been. Good that you went to the ER. It must have been way bad for you to have done that.

What a horrible start to 2011 you have had. I hope that the pneumonia is starting to clear up as well as your UC. Are you still on the Prednisone as well, or just the Mesalamine? It is amazing to me how other illnesses, viruses, stressors, etc all can have such a major impact on our flares. I can tell within hours of a stressful situation that my colon is not happy.

One possible tip: Flaring like that might have caused you to get dehydrated, which will give you a terrible headache, along with achiness throughout your body. Try to stay hydrated, and drink something like Gatorade. You probably should anyway, losing all those fluids, can't hurt.