DX changed from UC to Crohn's

My gastro doc had diagnosed me with UC-Pancolitis about six months ago after a hospital stay, bunch of tests, colonoscopy and sigmoidoscopy.

My genetic blood test for IBD--Crohn's vs UC came back positive for Crohn's. I still have to have the EGD(upper endoscopy?) and a capsule test where I swallow a capsule with a camera in it. I guess these tests are to see how bad or how advanced it is or maybe to tell how long I have had it.

I'm in a flareup now. I was in the hospital from Dec. 19-22. My symptoms at the moment are profuse diarrhea(20+ times per day), unbearable lower abdominal pain right and left side. I don't know if it is related but I have a couple what I call canker sores in my mouth and a couple painful sores on my tongue. I also have a lot of joint pain. The joint pain is in my ankles, knees, shoulders and hands. I keep getting dehydrated and feel extremely fatigued at all times.

My meds are:
Pentasa 1g 3x daily
Lomotil 2.5mg 2 tabs 3x daily
Questran Powder 4g 2x daily (NEW)
Atenolol 50mg 1x daily
Celexa 20mg 1x daily
Vicodin 5/500mg 3x daily(1 every 8 hours)
Valium 5mg 1 tab daily as needed for panic/anxiety attack

Five day course of antibiotics after IV antibiotics while in hospital:
Ciprofloxacin 500mg 2x daily
Metronidazole 500mg 3x daily

I have started an excel spreadsheet to keep track of everything I eat and how I feel several times a day to try to figure out a good diet for my body. I've just started though so my symptoms are still terrible and the pain unbearable a lot of times.

I am going to see my Primary Care physician Friday for pain management, but he is a PA and not an MD so I will probably have to get a new Primary Dr.

Any advice or thoughts on my situation would be greatly appreciated!

Was treating pancolitis with the Pentasa and Lomotil. I was trying to keep track of what foods agreed with me and what made me feel worse, but I just now actually started to type it all out and save it instead of trying to remember.

I was diagnosed with panic disorder when I was a teenager. Up until a few months ago my anxiety and attacks were under control for more than 10 years by taking 1mg klonopin 3x daily, but my Primary Dr switched me to just the 5mg Valium as needed i guess almost a year ago now. My anxiety and panic attacks have been bad and very frequent ever since the change. I am on the Atenolol because every time I went to see my Dr, my blood pressure was high. I tried to explain to him it was my anxiety causing it but he put me on the blood pressure med anyway.

Still have my gallbladder. Gastro doc just put me on that because during this flareup the lomotil isn't controlling the diarrhea like it used to. He said the questran should help make my stools more firm.

My GI seems to be completely against any steroids. I was in the ER once and they gave me 5 days of 60mg prednisolone(sp?) once daily. I had to take 3 20mg pills all at once every morning for 5 days. Those 5-6 days were the best I have felt for a couple years now. It was like I had my life back, but just for that week or so. It was pretty depressing when I was finished with the RX and started to feel bad again.

Rango is absolutely spot on about steroids. They work at first, but then stop working as soon as you come off them. Not only that, but the more courses of steroids you take, the more your body builds up a tolerance to them: they will stop working as well as they used to or even stop working altogether. You may also become steroid-dependent: that's when the body becomes reliant on external steroids just to function normally. If you are prone to panic and anxiety, I also don't think messing around with your cortisol system will help with that.

It boils down to this: a steroid-induced "remission" is a false remission. There's no healing going on. The inflammation isn't controlled, but merely suppressed for the time you are on the steroids and then it will be right back again.

I'm sorry to be blunt and lay it on the line like this. But I just don't want another person to go through what I did: years of pissing about on steroids, only to still end up needing surgery anyway. I didn't even get much symptomatic relief, since the symptoms would return before I had even finished the course.

Ask about taking a stronger med than Pentasa. Azathioprine/6MP are quite effective, but take 3-4 months to kick in :-/ Remicade and Humira are much faster-acting and can be taken in conjunction with Azathioprine or 6MP. You could also try an enteral nutrition diet (in a nutshell, a liquid diet) for a few weeks. I'm so sorry you're going through all this and sorry I cannot give you more hope. I just hope one of the stronger meds gets you into remission.

Lost my post - so annoying when sites don't let you set cookies to last forever :/

Anyway, I just said that steroids don't get you into a remission in the medical sense. Prednisone is a notoriously poor healer. In fact, it's a non-healer. Understandably this is hard to recognise: it's natural to assume that if you feel better then your disease is also better. I made the same mistake myself. In fact, I was on Pred so much (including being on 40mg for a month before surgery), I was slightly worried that the surgeon would open me up and find a mostly healed colon.

I knew enough about Pred by this point to know this would be unlikely, but subconsciously I still conflated feeling better with being better. And indeed my colon was not even slightly, partially, healed. The pathology report confirmed severe inflammation everywhere: it used the word 'severe' several times. There wasn't an inch that was free of disease.

That's what made me really realise what a non-healing med Pred was. All the other meds, I just didn't respond to: but Pred I actually responded well to. That was the scary thing for me.

How definitive is the genetic blood test for UC/Crohn's? I seen the report from the lab and the Crohn's box was checked and not the UC or the negative boxes.

I'm confused by my doctor not starting a more aggressive treatment yet. I have to get the endoscopy and the capsule tests done yet, but I feel like my doctor doesn't believe I am having the symptoms that I am telling him and he seems determined to tell me there is nothing wrong.

I am going to see my GP on Friday for a pain management consult. I had reported to my GI doc that I have had chronic abdominal pain constantly since April. It doesn't ever go away and I can tell the difference between this pain and just cramping. I have Bentyl for cramping and it helps the cramping, but the chronic stabbing pain in the lower left and right abdomen doesn't improve with the Bentyl.

So really I just feel like my doctor isn't helping me much because he doesn't believe me. Maybe it is just because the testing is taking so long and I have been suffering for almost a year now, but I feel that even without all the testing finished he should be doing more.

Also, I wouldn't put too much focus on the whole genetic testing thing. You have an inflammatory bowel disease. Figuring out which one is somewhat important, but what is the most important thing is to get better. The treatment protocols for UC and Crohn's are not significantly different when you are first diagnosed.

So I had my EGD today and the doctor did some kind of ultrasound imaging with the scope too. He found 2 tumors on my pancreas. One is bigger than the other and they are both around the 1-2cm size. He said they are also attached to each other by some kind of tumor like tissue. He doesn't seem to be too concerned about it being cancer, but that does have to be ruled out. He said it might be something called a neuroendocrine tumor.

Crohn's isn't confirmed yet...still have to have the capsule test.