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Diagnosed with UC but treatment not working & wife now having stomach problems also

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Ulcerative Colitis
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Posted 1/4/2016 5:24 PM (GMT 0)
Hey there. I was diagnosed with UC about 4-5 years ago after a colonoscopy showed a lot of inflammation. My doctor started me on 2 Lialda a day. This seemed to get a bit of the inflammation down, but I was still suffering from a lot of urgency, pressure, pain, blood in stool and fatigue. I then began taking Canasa 1x at night. This helped the most since I have Ulcerative Proctitis. But still... urgency, pain, irritation all day long. We tried to increase the amount of Lialda to 3x's a day but my body did not react well to that at all.

I had another colonoscopy about a month ago and it showed little inflammation but I still deal with all of the same symptoms every day. My doctor is starting to worry that there may have been a misdiagnosis for a couple of reasons:
1. My diet strongly affects how I feel. I kept a food journal for 6 months. Carbs and sugar are my worst enemy. I currently eat only meat and low starch/sugar veggies.
2. My latest colonoscopy shows little inflammation but I am still dealing with the same problems every day. The meds are not really improving my situation.

Another variable is the fact that my wife began to have stomach problems about a year ago. She had a colonoscopy and tested positive for h. pylori. I was also tested for this (blood test) but it came up negative. I recently did a stool sample test and am waiting for the results on this. My doctor said that this test would be way more accurate. I tend to gravitate more to the fact that I have some type of bacteria (like h. pylori) because of the way sugar and carbs affect me. I am actually hoping for a positive so that it would explain the troubles I have been having.

I am not sure what I'm actually asking here...maybe if anyone has had a similar situation? It's bad enough when you have a diagnosis and are attempting to treat it. It's even worse when you don't know what's wrong and feel lost.

As I write this I have a ton of pressure in my tailbone, pain, urgency. I never feel like I don't have to use the restroom. I never feel as if I have truly evacuated my bowels. All of the pain resonates in my lower back/tailbone area.

Thanks to everyone for any suggestions/support they may have to offer.
Posted 1/6/2016 3:59 AM (GMT 0)
Have you taken anything besides Lialda and Canasa? Both are mesalamine drugs, and most of us have to experiment with medication regimes before landing on something that works. In my case, my colonoscopies showed improvement, by like you, my symptoms continued to be terrible. It took close to two years to figure out that I'm part of the minority that can't tolerate mesalamine drugs. My medication was creating my symptoms, but since I started them while flaring, I couldn't tell the difference. I just thought I wasn't improving.

Definitely talk to your doctor about your test results. But barring a new diagnosis, explore other medication options.
Posted 1/6/2016 5:18 AM (GMT 0)
Your symptoms sound exactly like mine when I was first diagnosed with UC. I ended up with a pilondial cyst right on my tailbone! Hurt like crazy so I could hardly ever sit on my butt and had to lay on my side which always triggers a crap anyway. Lose lose situation.

If your stool test comes back negative, is your doctor offering you other medications to try? You still have plenty of options so you don't have to suffer with this crap. I'd treat it before it makes you any more miserable.
Posted 1/6/2016 12:35 PM (GMT 0)
If you have little inflammation but have the urgency, pain,etc BUT have no blood the IBS would be a likely diagnosis. All the fun of UC without the medication. I have UC and IBS and telling them apart is quite difficult.

The fact that your wife has h. pylori may not be a factor for you, possibly coincidence. A quick google says it "may" be spread by unclean water and food but that is not confirmed. I would def. wonder where the h. pylori came from and test my water. I also wash all my veggies before cooking and eating because who knows what pesticides lurk. People ate Chipotle's and Blue Bell ice cream (listeria) and went to the hospital.

If your symptoms are controlled by diet modification you should start treating it like IBS for which there is no real RX treatment so doctors don't like to hear about it too much, since they can't help and it's invisible physically so they can't confirm/deny we have it.

BaconGirl has a good sugg. about your tailbone. That could be an issue for your GI to follow up on.
Posted 1/6/2016 1:30 PM (GMT 0)
I would also suggest a different rectal med. The Canasa only go so far. An mesalamine enema would reach further up or maybe try a steriod one for a little while.
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