Ulcerative Colitis Update : Looking Back Over the Past Year
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A year ago (01/09/20) I was up bright and early for a colonoscopy. On 12/30/20 I had finally stepped into my current gastroenterologist’s office. I should have gone in a lot sooner, but I kept stalling. Then it took a month before I could even get an appointment. When I walked in on that Monday morning, I ended 2019 with an impromptu rectal exam, and was pretty quickly told I needed to have a colonoscopy STAT. To say I was nervous would be an understatement. I was pretty much in shock. I knew something was wrong, but I guess I didn’t think it as that big of deal? On the flip side, I did have a bad feeling about it, which is why I put off going to the doctor so long in the first place. I was nervous and I didn’t want to hear what they were going to tell me.
I think that is the reason I’m even writing this update and why I started my recent Women’s Wellness series… I want you to have the knowledge I didn’t. A lot of the things I know now are not mainstream media, but they should be. My doctor told me that it is pretty common for women of my age (late 20s / early 30s) and background (white) to have Ulcerative Colitis. What?! How is that just okay? What could I have been doing to help / prevent that? As much as I love posting about fashion and recipes, I get more joy out of sharing knowledge like this with you! I’ve received so many messages about how something I’ve shared led you to finally go to the doctor and look into your own health. My 2nd most popular post for the WHOLE YEAR of 2020 is my natural constipation remedy post. If that doesn’t back up my point, I don’t know what does!
So anyway, let’s talk about Ulcerative Colitis. To catch up you may want to read my post about what to expect when you get a colonoscopy and my previous Ulcerative Colitis Update. Here is a quick rundown of my whole timeline:
December 2019: I saw my gastroenterologist for the first time. She is awesome!
January 2020: I had my colonoscopy and was diagnosed with UC. Specifically I have Ulcerative Colitis Proctitis. For this reason, my doctor put me on Mesalamine suppositories in the morning and night. I have received questions as to why I didn’t take the pill version instead… here’s why. I have proctitis, which affects the lower half of my colon. The suppositories are topical and able to treat the area directly! The pill is easier, but would b indirectly treating the area, which isn’t as helpful. Most people are only able to treat their UC this way, but it is a blessing that I can put ointment on the area and treat it faster. Think about it like putting Neosporin on a cut versus ingesting something to help with it. The indirect way will eventually help it, but the Neosporin can cut down on pain and infection the second it is applied. Before and after the colonoscopy, they also ran a lot of tests. Bloodwork for anemia, celiacs, and more. I also did quite a few stool tests, which were literally like playing mad scientist with my poop. Not even lying. One of the stool tests was for calprotectin aka inflammation levels. I measured 1068.60 mcg/g. The normal rate is under 50. Let that sink in…
March 2020: I went for a post-opp visit and unfortunately was still very bloated and hadn’t received much if any relief since starting the medicine. Because of this my doctor switched up my form of mesalamine. We kept my suppository in the morning, but switched to an enema form at night. Oh my gosh! After using it just one night I felt immediate relief. My stomach was visibly flatter and I felt so much better. One of the things my doctor checked in office was my stomach and she could still feel so much gas and bloating before starting the enemas. I had been using the suppositories for about 2 months and had felt no relief. If anything, I felt like they caused me to become constipated. At this visit we also scheduled a test for SIBO, but we ended up cancelling it since I had so much relief from the enemas. It also would have probably been cancelled anyway because Coronavirus started to blow up. The day everyone went into panic in LA is the same day I got my enemas. The two will forever be intertwined in my head, because I honestly had no clue if things would shutdown all the way and if I’d be able to get my medication. My health was one of the things I was most thankful for in 2020. Seems like something you might not be thankful for with all that went on, but mostly I’m thankful for my amazing doctors, medications and that I was able to have my colonoscopy when I did.
August 2020: I went in for another check-in with my doctor and the biggest difference here is that I had lost about 15+ pounds of inflammation. I had already noticed it, but it was one of the first things she said to me when she walked in. I knew I had put on weight, but just thought it was my body changing. During the whole time I had gained weight, I was doing an hour yoga class 5 days a week and was eating fairly healthy. I was also walking more. Looking back that should have been red flags to me, but the weight crept in so slowly, I hardly noticed. I had been let go the previous year and we went through a stressful move, so if anything I thought I was just adjusting. Make note that weight gain like this is usually pointing to some kind of imbalance or inflammation. This month I would also take the first step in getting my hormones tested - I think every woman should do this! I also re-took the calprotectin / inflammation stool test. My numbers were 239. This was obviously better than the 1000+ range I had in January, but anything over 120 is considered elevated. I brought up medicines to my doctor and she sees them as long term… doing them forever. I was pretty heart broken. I got what she was trying to prevent, but I also didn’t want to be on medications forever. Still not sure what to do in regard to this / may plan on seeking a second opinion.
November 2020: I went in for yet another check-in. I had lost more weight - probably around 5+ pounds, which again my doctor noted. September - OctoberI had gone dairy free and gluten free, as my OBGYN had recommended it because we thought I had PCOS. It turned out I didn’t have it, but my DHEA was high, so she still recommended that I try to eat DF GF 80% of the time. I can’t lie - cutting those items made me feel better!! I probably lost 5ish lbs the month I cut them entirely, but gained some back when I incorporated them again. The biggest thing from this check-up is that we tested my calprotectin / inflammation again and this time my numbers dropped to the “normal” range!! In January my score was 1068.6, but as of November, my levels were 29. That’s right - TWENTY NINE. Anything below 50 was normal and i was well under that!! Because of this score, my doctor let me drop to one medicine, so now I just do the enemas every evening and cut the usage of morning suppositories. She thought I’d want to keep the suppositories because those are easier, but the enemas are what changed my life. Who knows. Maybe one day I can drop to 1 a week or something and not have to have this interesting bedtime ritual. As of right now, my next appointment is in March and we have a tentative colonoscopy scheduled in the summer to check everything out.
January 2021 vs June 2020 vs June 2019
Cost: 2020 was a very expensive year. A colonoscopy, multiple doctor visits, constant medication, and an ER visit was a lot. We are actually still fighting a bill from last January from my colonoscopy… and we have good insurance. This truly opened my eyes to why insurance is important for everyone, as I don’t know how anyone can afford this (or other things) without it. I will say that Good RX is a great starting point even if you do have insurance. It won’t go to your deductible (if you do have insurance), but it will decrease the amount you owe significantly. Definitely check it out!!
Natural care for UC: I am 100% thankful for western medicine and how it has helped heal me. It is slightly scary because the meds I’m on can cause kidney failure; however, the rate is low and it is something we check (via urine) each time I go in for a check-up with my doctor. I also feel better about it since I have been able to drop to Mesalamine once a day versus twice a day. I do think that there are lots of things you can do to help yourself naturally though.. so why not incorporate those where you can?! Some things that I do are
chiropractor visits - I’ve been seeing a chiropractor for over 10 years. I have scoliosis, so it’s just something that has helped me. During the time I moved and the time I was diagnosed with UC, I hadn’t seen one in a while. I read up on things to help with UC and chiropractors were at the top of the list. I had been meaning to find one in LA, but a lot was going on. I should have done this sooner!! He has helped me so much. My sacrum was off, so I was going weekly at first, but now I’m back to about once a month / as needed.
diet adjustments - Trying to be DF / GF most of the time has helped a lot. My digestion is a lot easier, so I feel better more often. Mine isn’t this bad, but I know a lot of people with UC who don’t eat vegetables unless they are cooked. Raw veggies are harder for your system to process, so they often cause bloating and gas. This is already an issue with UC, so it makes it even worse. Keep a food journal and see what is best for you! When i do eat dairy, I try use sheep or goat products where I can. Pecorino Romano (parmesan cheese style) is usually made from sheep’s milk. I also really like goat butter and kefir which is lactose friendly. I’ll share more DF // GF favorites at a later date. Coco Bakes is my favorite GF bread right now - she is local to Santa Monica. Something that has also really helped me is Pique Tea. I drink the Ginger Digestion Elixir Tea every night and has been a game changer. I was gone for almost 3 weeks over the holidays and was able to go once or more a day. Typically with travel I have a hard time going and I had NO PROBLEMS at all. At first I would drink the tea only when I had an issue, but it is best used regularly so you don’t even have issues! You can try it for 5% off with discount code ELLEMULENOS.
acupuncture - I actually started this to help balance my hormones, but it also helps digestions. My acupuncturist is AMAZING and I wish I could hug her. I for sure will after COVID ;) Will discuss this in detail at a later date. Note that not all acupuncturists are created equal. Mine specializes in females and their bodies.
exercise - I have found that trying to move my body daily (whether it is a workout or just a walk), helps keep my bowel movements healthy. It’s easier for me to go now than it was, but sweating is really healthy for a lot of reasons.
other - Massage is supposed to be really great, but it’s something I haven’t really been able to do because of COVID. There are videos online where you can rub your stomach for relief though. This sometimes helps and sometimes doesn’t. I’ve also looked into lymphatic drainage massage which looks SO GOOD. It is on the pricier end of massages though.
Enemas: These aren’t like normal enemas - you have to keep it in versus letting it all out. Some nights it is fine, but other nights it feels like a bad period cramp for about a minute. It also feels cold.
Acne: The original reason that I even went to see my doctor is because my acne was out of control, all the time. If there’s not a pattern and it is just constant, this is typically an issue in the gut. My skin is so much better than it was a year ago. I do think part of the problem was UC, but another issue was my hormones. My high DHEA acts like high testosterone, which causes acne. My point is exhaust all your options! You can see more on acne / what my face looked like here.
Bad days: One question I received regarding UC is how I cope with bad days. Yes I still have them, but not as much as I used to. Unfortunately, I’ve viewed them as “normal” now, but I still try to help them when I can. Typically if I’m having a flare up, I will watch what I eat very closely. To be honest I don’t eat a lot those days. One of my favorite things to do is boil ginger root to make a fresh ginger root tea. This helps with nausea and bloating and the warmth helps with digestion. I do a lot of hot lemon and lime water too. I drink hot water with a squeezed lemon and lime wedge every morning, but will have it with every meal or just because if I’m having an off day. Every morning I take a turmeric / ginger tincture and on bad days I might have 1 - 2 more doses of it throughout the day to try and help. Drinking this Ginger Digestion Elixir Tea regularly helps too. It’s usually visible on my face if I’m not feeling well, so I make sure I tell the people I’m with that I’m not mad or anything - I just don’t feel well. That’s pretty much all I can do. Oh and if I have time for a nap, I do that too, though the bad feeling typically hits me toward the end of the day around dinner time.
October 2019 vs January 2021
I hope this post has helped you whether you were just diagnosed with UC or are just trying to learn more about your body. If something feels wrong or off, take notes and go see a doctor. Don’t be afraid - just go. Finding out now will be better for you in the long run - both physically and financially.
When I was reflecting over last year (2020), it was rough, but one of my biggest takeaways was regarding my health. I was talking about it with Nick and he vocalized “yeah - you were really suffering.” I think we live in this day and age where people either complain about everything or complain about nothing and tell you you’re weak for even feeling anything. If you don’t take action and be an advocate for yourself, no one else will. Feeling this way is not normal and you deserve to feel better. Sure, there are some days where I have an urge to go to the bathroom or can’t eat a meal because my stomach hurts and and I feel bloated and full; however, I feel better than I ever have. To be quite frank, I’ve never spent LESS time in a bathroom. It is so much easier to go now and I never want to go back to life the way it was before.
I know I shared photos that look more weight loss focused, but it really isn’t about the way by body looks… more like how it feels. How it looks is just the easiest way to convey how much inflammation I had and how much less I have now. I never hated how it looked even at my heaviest weight - it was more about how bad I felt and I didn’t think I could do anything about it. I thought it was normal! In truth I currently work out less now than I did before - less strenuous workouts at least, if not less days too. I also focus more on what foods make me feel good versus not caring or being super restrictive. Find your root cause / issue and try to go from there. I’m pro feeling better than pro a “goal weight” any day.
If you’re struggling with UC or other non-visible diseases, I just want to let you know that I see you. It’s funny - I’ve dealt with unseen ailments before with my scoliosis. I keep telling God that I’ve learned and have empathy, but he keeps giving me more understanding. Having UC has humbled me and opened my eyes in ways I thought they were already opened.
Thank you so much for reading - I hope you were encouraged. XOXO
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