looking for new alternatives or tips

Hi, I'm a 22 y/o male dx for a year now with UC

I'm asking for help because my doctor tells me my uc is very mild but I'm still going to the bathroom very urgently and about 6 times a day (usually with only about a minutes notice before i have to sprint off to the bathroom, it's gotten so bad that I have plastic bags in my car to go in if need be bc of my morning commute to school downtown which is only about an hour even though I use the bathroom before leaving). Blood and pain/cramps have completely gone away but I still do not form fully solid stools and cannot pass gas w/o having to use the bathroom. I have tried various different treatments (enemas caused my BM's to be too unpredictable the next morning after using them, mesalamine didnt really do much either, tried a prescription medical food product "enteragam" still no help) Right now I'm on Lialda and Uceris which helped get my BM's down from 9-10 times a day and just did an Induction dose of Simponi two weeks ago and have to take another shot this week [havent seen a change but im willing to give it a bit longer]

So far the only medicine that has helped was predzone which made me only go to the bathroom about 1-3 times a day with no incredible urgency (I went on it for 6 week treatment twice, once a month after i got diagnosed in Nov 2014 and then again in Feb 2015 when i told the doctor the mesalamine wasn't helping), but I just don't understand why I'm having so much trouble with it, when my doctor tells me it's mild? I got a colonoscopy done a couple months back and he tells me the inflammation is in a spot that makes me go to the bathroom more often (im guessing it's closer to the rectum). I got prescribed Proctozone and am gonna give it a try this week [money has been kind of tight w/ all the different treatments he's been putting me through] but I just wanted to ask if anyone had any ideas or could help me out? I'm starting to feel very hopeless about this now that it's been a year of no remission.

I read somewhere that aloe vera gel could help, so I'm going to try that. If anyone has some tips i'd be very grateful. (this is also my first time ever really reaching out for help outside of a doctor)

some type of rectal med is key if the inflammation is near the rectum

Here's my suggestions (because it helped my symptoms):
Doctors only care about what they can see in biopsies and scope so they rarely talk about how to deal with symptoms that may not be helped with standard UC meds.

Everyone with urgency should use rectal meds (enemas are best until things are under control) unless they have negative reactions. Bad reactions to mesalamine enema are rare but there is a sulfite-free type in case you are allergic/sensitive to sulfur/sulfites. Mesalamine intolerance is even more rare so don't give up enemas unless really necessary.

If you continue to have problems then consider that you might also have IBS. IBS is invisible on a scope but is a real problem because it can mimic UC while the UC meds do nothing to help. It took me doing extensive diet modification to get rid of urgency, bleeding and other symptoms. GI's rarely discuss diet mod. because they have little or no education in that. And secondly there is no single diet that a GI can point their patients to try. Both the celiac and lactose tests came back negative for me but when I removed those foods my symptoms got better, not 100% better but bleeding stopped and gas decreased.

Diet mod. is the hardest thing to nail down but when you start to see improvement follow that trail. And I can tell you from my own perspective that "problem" foods do not need to be avoided forever once the symptoms have been quieted.

UC and IBS can be interwoven and hard to determine. Bleeding is always blamed on UC but when I removed gluten/wheat my bleeding stopped. Heavy fiber can also cause bleeding and my diet is low in insoluble fiber.

No one can do this IBS/diet detective work except you. Good luck.

Well, uc is measured in extent and severity, and they are two entirely independent variables (one can have limited disease extent but have a severe case of uc with bad symptoms), perhaps you're mixing up what your gastroenterologist said.

Extent: if your uc is limited to just the rectum, then it's an ulcerative proctitis diagnosis. If it extends further to the sigmoid colon then it's ulcerative proctosigmoiditis. If it extends throughout the entire large intestine then it's pancolitis.

Severity: Mild uc disease severity is less than 4 bms a day without signs of blood. Moderate severity is 4 or more bms a day. Severe is 6 or more bloody bms a day and includes rapid heart beat and often anaemia. Fulminant is more than 10 bms a day and can quickly land one in the hospital due to anemia, dehydration, or pain.

Based on your described symptoms, you have moderate severity. You haven't said how far your uc extends.

Deen, diet modification helps some but not all uc patients. Diet did absolutely nothing for me. Can't hurt to try though.

More information please.
What's your exact diagnosis?
Exactly what enemas did you try?
Exactly how long did you try them?

There are many threads describing various alternatives including diet that have helped many people. Here is one example:
https://www.healingwell.com/community/default.aspx?f=38&m=2604179

And there is a sticky thread, Ulcerative Colitis Resources, at the top of this page that has a section describing alternative treatments.

Homer said...
More information please.
What's your exact diagnosis?
Exactly what enemas did you try?
Exactly how long did you try them?

Can't tell you more than UC but I'll try to get more specific info once I see my doctor again. The only enema so far that I have tried was a mesalamine enema which i tried for two weeks every night, the problem was that instead of flushing it all out in the morning my body would want to spew it out whenever it wanted to, and i'd still go the bathroom the same amount throughout the day than when i wasn't on it. But like I said I'm gonna pick up the proctozone tomorrow [doc said since it's a rectal foam i might react better to it since it dissolves in my colon]

If diary did not previously bother you there is no reason to assume it will bother you now.

There are tests for lactose intolerance

I have mild UC and have urgency. seen on scope that it is mild , doesn't matter for me it causes hell even mild, when I get into med-severe than then bleeding starts [plus even MORE urcency but really whats less than a minute warning regardless . I have IBS which I agree with others on here that that can confuse the line between UC symptoms like urgency and IBS urgency . im working on getting my diet back to where it helps with that to see if I can get urgency control , before my UC diagnosis I was starting to get urgency and I went to an ND who mapped out a no grain no sugar whole foods etc diet that firmed up my bowels after 2.5 months on that and I slowly starting adding things back in, time passed and then a year or so later I was at a funeral with urgecy and now bleeding to being diagnosis with UC , so ive never retained that level of control thru diet since, not to say you wont. I have taken lots of meds and am currently taking Cimzia and 6mp which still have me with sxs . only thing that has ever totally worked was steroids then I got off prednisone to be cortisone enemas which didn't work as good but better than rest. lots of alternative things help some but just like meds not completely . ps - dairy used to not bother me AND TOTALLY DOES NOW
goodluck
I empathize with you it sucks I have same thing in car btw

Post Edited (SS0000) : 12/3/2015 6:03:35 PM (GMT-7)