My story

[polynesian]

My story began 4 years ago. I was just put on a new medicine when my first attack, as I like to call them, happened. I was using the bathroom 20 to 30 times a day. And if that wasn't bad enough, I was awakened through the night. We thought this was a side effect from the new meds. so I tapered off. The symptoms seemed to go away. This attack lasted about 3 to 4 weeks.

A year later, at about the same time of year, I started on a new medicine when a second attack occured. Same symptoms. We thought it was the meds. again so I tapered off. The attack lasted about the same as the first.
One year ago this last February I had my third attack but this time I was not on any meds. My symptoms were bloating, gurgling, and pain in the lower abdomen. My lower abdomen was just moving and shifting and talking. Lots of cramping and then the diarrhea anywhere from 20 to 40 times a day. I lost about 15 pds. and basically stopped eating. Finally after a nurse practictioner ran a bunch of blood tests and took stool samples and recommended different therapies to stop the diarrhea, she prescribed a week worth of prednisone. It worked.I was in remission for about 14 months. Your probably wondering why a NP? I don't have health insurance. So the NP was confident if the prednisone stopped the diarrhea I had crohns.

14 months later I'm in my fourth attack. This one started May 3, 2011. There is a new NP at the health center who is working to get me into a GI specialist which then we hope he will administer a colonoscopy to confirm what I have. My symptoms are the same. Lots of gurgling, cramping, some nausea, and of course the diarrhea. The new NP gave me mesalamine which did not stop the diarrhea after 2 days so she prescribed a weeks worth of prednisone. I was excited to get on the prednisone so I could go back to living however, it's slowing the diarrhea down but not stopping it. I still have cramping and gurgling. I'm discouraged because I thought I would move on. I'm also scared because I thought the prednisone would kick it so now I worry I don't have crohns and it could be something else. I should find out today when I can see a GI specialist. Thanks for listening

 

[xJillx]

Hi polynesian and welcome! Your symptoms do sound similar to Crohn's or UC, so meeting with a GI is just what you need to do. And don't panic that it could be something worse because the mesalamine and prednisone didn't work. First off, it would take the mesalamine at least 2 weeks to kick in; 2 days is certainly not enough time. I am shocked the NP would stop you after 2 days. Also, it can take pred a few days to kick in, as well - how many days have you been taking it? Furthermore, you may not be on the right dose this time; this "attack" may need a stronger amount.

Therefore, don't get yourself stressed out thinking something worse could be going on. Also, you may not have IBD at all. You could have food allergies. But, regardless, you have to meet with a GI soon to figure out what the issue is, so you can address it, and start to feel better.

Please let us know how your appointment goes!

 

[polynesian]

Hi xJillx. I've been on the prednisone since Friday. I was just expecting a miracle because that is what happened a year ago. It stopped the diarrhea right away. I guess I'm in limbo just waiting to feel better.
The reason why we are considering that I have IBD is because my grandmother had both crohns disease and ulcerative colitis. Let's hope I get a colonoscopy soon.
Thanks

 

[Jer's Girl]

Keep us updated Poly- and welcome to the forum!

 

[David]

Hi polynesian, and welcome. I'm sorry you're in another flare and I hope they get it under control soon. Am I reading correctly that you were only given 1 weeks worth of Prednisone? Usually people are on it much longer than that when in a flare.

*hugs* to you

 

[polynesian]

Hi David
I have not been diagnosed yet. So the NP's are just trying to stop the diarrhea until I get to a GI specialist.
I do have good news. I will be scheduled for a colonoscopy within 2 weeks. I never thought I would be so happy to have this procedure but if it gives me answers to what is wrong with me then maybe I can start living.
Do flare ups still occur when your disease is being managed with meds. I've read so much info. about symptoms, testing, and what the disease is but I can't seem to find much on how you feel when your not having a flare up. Does the medicines keep it under control? I guess I'm looking for feed back on everyday life under the care of a GI specialist.
Have a great day

 

[xJillx]

Good news about the colonoscopy! Have you had one before? The procedure is a breeze; the prep is the most difficult part. Were you told what prep to use yet?

Ideally, your medication should put you into remission. Remission can differ from person to person, but generally is defined as being symptom free. And it can happen! There are many on the forum who are in remission and/or have been in remission - sometimes for years! It's the dream of a Crohnie to achieve a long term remission.

 

[ameslouise]

Hi Polynesian and welcome!

Good luck with the colonoscopy - it's a good place to start toward getting a dx.

Just curious what "new med" you were on 4 years ago that triggered your first attack?

Hope you get some answers and start feeling better soon!! -Amy

 

[polynesian]

Awesome to hear that you can achieve remission.
They have not told me which prep I will have but somebodyelse said the prep is most difficult where the procedure is simple. I'm so happy to hear that. I'm already starving. I tend to not want to eat durring a flare up. I just sit around and wait for the cramping to stop and the diarrhea to stop!
4 years ago my Dr. took me off pazil and put me on zoloft. It seemed at the time I was having a reaction to the medicine but in hindsight we don't think it had anything to do with the meds. So I slowly went off. The following year I was depressed so the Dr. put me on cymbalta. I then had another flare up. Once again we thought it was a reaction to the meds. so I went off. Both instances my Dr. said that severe diarrhea was not a side effect from the meds. The next year I was not on any meds. and I had another flare up that lasted 6-7 weeks until they gave me a prescription of pred. That seemed to stop it for 14 months. Now here I am again going on my 4th flare up that has lasted 3 weeks so far.
I've read somewhere that a high number of crohns patients and ulcerative colitis patients have had a history of depression and anxiety. What does everyone else think of that.
Since childhood I've had problems with my lower abdomen. Cramping, bloating, my right lower side hurting, and always hearing and feeling my food move through my intestines. However, I've never had a problem with my bowels until 4 years ago. Before my first flare of diarrhea I remember being constipated, which has never happened before, for a period of time. I also remember having night sweats before my first flare up for at least a year. I've read somewhere that this is a symptom.
Thank you so much for the information you guys are giving me. I will let everyone know what turns up on my colonoscopy.
Good Night