new diagnosis, nervous about meds

So.. part of this is going to be me venting my little story. I've read and a lot of posts on this site, and written a few. At the time my doc suspected UC per colonoscopy, but now it's official. I feel like there is no one in my life that takes me seriously at this point, and the ones that do just keep trying to fix me and, dangit its not that easy.

***From the top (this could get long, please dont hesitate to scroll past my asterisks where I will ask for some advice/reassurance/etc): I started smoking marijuana at age 15 or 16, I was a HEAVY pot smoker for 11-12 years...like morning noon night, unreasonable amounts. Literally never went a day without unless I was out of the country. Yeah, I know. You can judge, I kinda judge myself for it too. That said I was astonishingly functional, I have a doctorate degree, blah blah blah. Also, by bowels were super functional. I pood every single day, first thing in the morning like clockwork, never more never less, always well formed and awesome.

***In May of 2015 I started cutting back, by July I was down to 1-3 times per week. In early September 2015 I had a bout of constipation that lasted about 5 days. After that things were a little less regular, but no UC symptoms. November 2015 I stopped smoking altogether. Let me note that I was in the last stretch of my doctoral program, definitely stressed, and coping differently than I had ever know before (sans mj) Nothing I couldn't handle though.

***I graduated Dec 2015, and a week later I got SUPER ill. Liquid diarrhea for 7 days, debilitating nausea for 15. Nothing has ever been the same. I cant say I have had a normal well formed stool since. My late January 2016 I had a lot of mucus, almost constant diarrhea and a unusual amount of gas. By Feb 2016 I noticed the first blood. None of those symptoms have gone away. By August 2016 I was getting more urgency.Overall my symptoms are mild-ish Frequency (usually 0-3bm/day, still sometimes constipated), nocturnal BMs sometimes, but more often I'm up at night to just try to pass gas, mucus and blood (with urge enough to wake me up). Oh, and tenesmus at times enough to make me feel like I'm going to faint. Ugh

***And I sadly let all of this go without seeing the doctor for a year. I went through a couple doctors who were the absolute worse. Literally fighting with me, downplaying my symptoms, prescribing medications as diagnostic measures etc. Finally I found one who listened. She immediately sent me for a scope which revealed inflammation up to the splenic flexure. I knew it. I didnt want to. I didnt want to confront it. Its still hard, especially with a background in holistic medicine, a generally very health diet...how could I? And how could I suffer through this for a year without going to the doctor. Grr.

Interestingly, since the scope I feel like my symptoms are a tad better. Just a tad. I have taken turmeric (which is a staple in my diet anyway), boswellia, probiotics, fish oils, multivitamins...nothing particularly helpful. I have tried smoking mj again in the last month, which definitely seems to help, but I hate the feeling now. And having been a smoker for so long, and done every freakin variety, strain, CBD formulation out there, trust me they all get you high. Yes even the CBD. Maybe its a different high, but still high. At least for me. Just not enjoyable. And I hate eating it mostly because of the taste. So I would like to avoid that route if possible...but will go there if nothing else works. Essentially nothing I have tried has been consistent enough to know for sure if it's helped. I also have not been regulating my diet much.

My main concern is going on medication. I was prescribed Lialda on monday and haven't started taking it yet. I fear the side effects. I fear not responding. I fear adverse reactions. I fear that if I start it I will never get off it, and if i try I will have worse symptoms than ever before. At least that seems to be the trend. Is there any hope for me considering I technically have mild symptoms? (don't get me wrong, I have pood in the woods, I have pood in my pants, i have anemia due to blood loss, but I'm mild compared to many)

Also, will I ever have a normal poo again? Its been so long, and they used to be so good.

Have there even been any cases that unmemdicated people have reduced inflammation enough to have a clean scope?

OH! I could probably ask my doctor this next time I see her but I figure y'all could help me with this one too:

When doc asks "how many BMs do you have per day?" I have no idea how to answer.

How many times to I actually pass stool?
How many times to I have urge enough to make me go sit down regardless of what comes out?
How many times to I get ANYthing out per day?

They are all so different, but they are all so relevant/significant with regard to symptoms...

Any feedback is so appreciated. Sorry about the long post. It is so meaningful that this forum is even available. Everyone that posts is so kind and considerate. Whether or not you can follow my kooky rant-post or not. Thanks for being here y'all

Yes that's the only one.

I guess I also forgot to mention I do not have any pain. I have had several significant joint flare ups.
July 2016 left thumb metacarpophalangeal joint, then left hip joint
September 2016 right elbow, then right acromioclavicular joint
December 2016 left hip again, then right wrist, then left wrist

Post Edited (still_living) : 1/11/2017 12:50:14 PM (GMT-7)

Thanks imagardener2. Very helpful advice. I appreciate it. I just went to pick up prescription and found out that the meds haven't been auth by insurance yet and would cost $340 oop, so I have to wait anyway. This is hard. Trying to be strong.

It is very hard on everyone when we get chronic disease diagnosis and specifically if it is mild, hard to accept that. Most painful part is accepting that we will have to take some kind of medication for life and side effects from those medicine. Very few people can manage with only diet and can have normal life.

So if you have UC then you will have to give try to medication. Lialda is first line of medicine. It has the least side effects and very safe as it works topically in your colon. I would say if Lialda works for you and brings you in remission, keep taking them because once it fails next line of medications are immunomodulator and/or prednisone.

Wish you loong remission.

get the Lialda co-pay card to pay some of what you ins does not.

It is scary when we are first diagnosed, but take the lialda. I would also ask for rowasa or steroid enemas. Feel free to ask anything here, nothing phases us!

My dr prescribed Lialda but it was very expensive. I got him to change it to Balsalazide. Basically the same drug, just have to take a lot more pills, and it costs $125 vs $860 or something like that....

Thank you all so much for the feedback, unfortunately there have been some serious malfunctions between my doc, my insurance company, and the pharmacy. Should have meds sometime next week. Will be taking them.