Well, I’m usually very private with my health conditions and I have not shared over the past year about my diagnoses of UC (Ulcerative Colitis). I do think some of why I had been quiet and not sharing, was there really wasn’t much to share – like many others, I was diagnosed with this disease and figuring out how to live with it.
But, I finally do have something to share about a path I’m taking and believe that my information could be helpful to someone else dealing with UC.
So, my story begins back in my late teens or early 20’s when I was first diagnosed with IBS – don’t think they really called it that back then – but that’s what I had and I figured out a way to keep the doctors away pretty fast. I discovered Citrucel via my doctors advise and I want you to know that this stuff worked for more than 30 years for me! It was my morning “orange juice” LOL But, if I drank a glass every morning it seemed to keep me balanced and was what my system needed.
Fast forward to the Fall of 2015 – this is when I look back, I can see things were starting to change, but it was a very slow process. I ran out of Citrucel and thought I would grab whatever Costco had – may have been Metamucil, but at the moment I didn’t think it would matter – fiber supplement is a fiber supplement, RIGHT? Well, not for me!!! After switching to Metamucil things just didn’t seem to be working the same for my digestive system – so I gave up on the Metamucil and went back to Citrucel. But, things just never went back to normal…….now I don’t know if this had anything to do with developing UC or not – but is when I noticed things changing for me.
I kept taking the Citrucel and kept coming up with excuses to why my system was off. You know, it’s stress. My body needs to adjust back to the Citrucel. Maybe I just can’t eat certain foods anymore. And on and on – yes, I was totally in denial that something was really going on that needed attention. But, the process was slow – it didn’t change overnight.
Finally, (and this could be more information than you need to know) – but there was blood in the stools and they were getting looser and looser. I gave my self a deadline (now if you know me well, this is totally a way I deal with things) that if nothing improved by the first of April, I would go see the doctor. Okay, this was six months later – talk about denial!!! Then it also became the FEAR of what was wrong with me and did I really want to know – Denial and Fear!!!
I did make that appointment to see my regular doctor and it was determined that I needed to see a specialist GI doctor. Well, with all the test, referrals and such I think I finally saw the specialist at the end of April and had my first Colonoscopy scheduled for the first part of May.
Between the GI appointment and Colonoscopy was our planned trip to “Stage Coach” – which is a long weekend of concerts, eating, drinking with good friends in a motorhome…..LOL Well, those staying in our motorhome, got to know me a little better – I was pretty sick at this point!!! But, somehow I made it through this fun weekend – feeling it was my last chance to just party my ass off (no pun intended) before the reality of dealing with my condition.
For all you that have had a Colonoscopy – the truly fun part is the “prep”!!! You drink gallons of this stuff, that no mater how you flavor it, it’s hard to drink it all. And then the running to the bathroom – hoping to get there in time!!! Does this bring back memories? One of my friends was keeping me company via the phone that day (Thanks Morey) what a great friend! We would be talking and all of a sudden, I would say “gotta go”! Not sure how many times I called her back that day – too many to count, but thankful for the company during such a fun day of Colonoscopy preparation!!!
I some how made it through the preparation and another friend drove me to my appointment – there was the discussion if I needed some “depends” for the ride……LOL You gotta love your friends humor at a time like this.
Once at the center, I was very well taken care of and basically put in line for my Colonoscopy. I’m sure I was out at the count of 2 – I was exhausted at this point. I was woken up to be informed that it was over and my doctor informed me of having Ulcerative Colitis. Not really knowing what UC was – I just followed the directions of my GI specialist and started to take the meds prescribed. I was thinking okay – I now know what I have and there are drugs to FIX it.
I do really like my GI Doc but, he is not that informative about the disease. I was just thinking I will be okay now – the drugs will “cure” me! Funny me – there is no cure for UC – these drugs are to just help put you into remission and hope to keep you there. So of course, I’m the patient that these drugs are not working for, so I’m then put on Prednisone to help my drugs work and start a roller coaster ride of Prednisone.
This is months and months of trying Steroids (several different ones) and the cycle of seeing if they would work was months. After no success for me, I meet with my GI doc again and I’m thinking, they will just try another drug for me – there has to be many different drugs for my condition – Right? But, what I did find out was that I had exhausted all the mild drugs for UC and the next level of drugs were more hard core with lots of side-effects! So one more attempt with the Prednisone was going to be my last chance to get well with these more mild drugs. If this didn’t work – my next drugs was going to be 6MP…….so I finally started to research this drug and wasn’t happy that it was my next choice!!!
So to give you an idea of how long it’s been – I was diagnosed in May 2016 and it was Jan/Feb of 2017. Dan and I were getting ready to take our first week long dream vacation to Maui and I had another appointment with the GI doc scheduled. This time I took Dan – feeling I needed another set of ears to help me decide if I was going to take the 6MP or not. But after meeting with my GI – he didn’t want me starting this when both of us were going to be on vacation. He also decided that he was going to get me off the Prednisone before Maui because Sun and Prednisone don’t mix well.
Part of what scared me to death about the 6MP is that it has many side effects to which you have to have your blood work done every 4 to 6 weeks – not a life I wanted for myself!!!
Now, I’m getting ready to head on vacation without Prednisone – I hated this stuff but it kept me from getting too sick. Doctor told me to use Imodium if necessary to keep me out of the bathroom if things got worse during my trip – just what I was looking forward to on my vacation, NOT!!!
During this time of weaning off the Prednisone fast – my son had been telling me about an article he read on the internet about Tequila and gut health benefits. He had been telling me about this for many months – but I was just ignoring him. But he finally said – Mom, what do you have to loose? And that was a good question – nothing the doctor was giving me was working so why not try Tequila? Supposedly, the Tequila was to line the digestive system and allow your drugs to work better – so, I started to try it. I was shooting a half shot of Tequila before taking my drugs every morning. Yes, I was shooting Tequila in the mornings. Along with this, my son also recommend that I try the Alkaline water – which is also suppose to be good for your digestive system.
So my Tequila shooting days began a couple weeks before Maui, I was shooting Tequila in Maui and even when I returned home. By Gosh – something was working!!! I don’t know if it was the Tequila, the Alkaline water or what – but this was the best I felt in a year! I told my doctor about this and he was not thrilled to hear I was shooting Tequila – but something was working and I was just thrilled……I had my energy back, I felt good and was even eating a salad again! Yes, I love salad and had given it up of months – greens are hard to digest!
Now, I’m not sure I would recommend the Tequila shooting – but it did work for about a month or something was working……but all of a sudden, I could tell I was going in reverse – my short month of feeling good was ending! It was almost depressing.
I was once again back to the point of thinking my only direction was to try the 6MP. But something kept telling me I didn’t want to go that direction – so I started researching other directions for help. And one of my employees reminded me of a Chinese Acupuncture & Herb specialist.
Through my exploring the internet I discovered a site called “iHaveUC” – which gave me the inspiration to try to overcome my UC with diet. Make sure to check out this website, his book and cook book. This is my new journey along with trying the Chinese Acupuncture & Herbs. I’m at the sickest I have been – but have high HOPES for going this direction.
I will follow up with my status and journey over the next couple of weeks to let you know how things are working for me. But I share this information because it seems that the doctors out there only want to try and help with drugs and I believe that there is another way to control my UC.
My thoughts and prayers go out to all of you that deal with this condition!
Some websites to check out:
Specific Carbohydrate Diet™
iHaveUC cook book