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After experiencing semi-alarming symptoms, I made myself an appointment at a gastroenterologist. After meeting with my new doctor, she swiftly scheduled a colonoscopy. I wrote about what to expect from a colonoscopy here. and I was diagnosed with Ulcerative Colitis, specifically Ulcerative Proctitis early 2020. Fast forward to now, about 7 months later - August 2020, I had one of my check-ups with my doctor. I’ve received a lot of questions in these past months about ulcerative colitis and knew I wanted to write about it, but wanted to wait until I had actually experienced it more. Today I’m finally going to fill you in on my UC journey!

John Mayer Concert Tee (from actual concert) | Madewell Button Front Jeans (c/o) | Uncommon James Criss Cross Earrings | Cariuma Sneakers (c/o)

Before I get started, I just want to say that I will not be sharing any of my specific symptoms that led me to make a doctor’s appointment. I don’t want to share them because I don’t want to scare anyone into thinking they have something when they don’t. Just pay attention to your body and try to take notice if anything odd is going on. Make a doctor’s appointment sooner rather than later if something doesn’t seem right. I wish I would have made my appointment faster and maybe I wouldn’t have to deal with everything I am dealing with today. Regardless, I’m thankful for my doctor and modern medicine.

They made me change masks upon arrival.

Okay so I was diagnosed with UC in January. Besides the colonoscopy, we also did stool inflammation tests as well as bloodwork to rule out things like anemia and celiacs disease. After it was certain, I was promptly put on Mesalamine via suppositories 2x a day. I had my next check-in with my doctor in March and didn’t see much of a difference. The initial symptoms were lessening, but still occasionally present. ALSO I still had a ton of bloating. Because of that, my doctor changed up my medications. I was / am still on Mesalamine, but my medications were switched to the suppository in the morning and an enema version in the evening. Because I still had so much bloating, we also scheduled a breath test for SIBO (small intestine bacterial overgrowth) for a monthish later. About a week later, yes, LA started shutting down because of COVID-19, but I also felt relief for the first time in a while. I felt the affects of the enema less than 24 hours later. I woke up the next morning ~ 8 hours after my first enema and both Nick and I could tell a difference in the way my stomach looked and I could for sure feel a difference. I waited a couple days to make sure it wasn’t a fluke, then told my doctor the good news. We ended up cancelling my SIBO breath test because of the success, but it probably would have been cancelled anyway because of the pandemic.

Sooo that’s been that until now. Today I had my latest check up and I felt really optimistic going into it. I have been doing/feeling so much better! I’m not sure why I thought this, but I figured I’d be able to get off my meds. Again not sure why I thought this because it’s a chronic disease… Regardless, I was pretty shocked (to the point of tears) when my doctor told me meds would be a life long thing. I mean I knew that I was diagnosed with a forever disease, I guess I just didn’t realize the medicine would be a part of my life forever. Cooool I have to take enemas and suppositories until I die. Thoughts like monetary burdens, sharing rooms with people on trips and having to insert my enema (whenever we get to travel again that is), and how I can pack a carry-on bag with a big box of enemas and so much more all came flooding through my mind. Wow. The good news is that we are going to do another stool inflammation test and if my numbers are good enough, we can drop me down to one medication (instead of 2) and go from there. Since I still have some days with bloating and pain (I’ve maybe had 2 the last 3 months) we are going to keep the SIBO test in our back pocket should things worsen. My next doctor’s appointment is 3 months from now (November) and we will decide then if I need to have another colonoscopy. After we get this “under control” the hope is to go to an appointment every 6 months or even a year, then a colonoscopy every 2-3 years. We’ll see! I may go get some second opinions depending on how things pan out.

Tried to make it to my car before breaking down in tears.

Forever seems like a long time, but in the end my doctor recommends I continue taking mesalamine to make sure my UC is kept in check / doesn’t get worse. The fact of the matter is that I have it pretty good. It’s a small portion of my colon + we caught it fairly early and have been able to treat it. I haven’t had to adjust my diet really at all. In theory I could stop taking the meds, but then run the risk of a bad flare, it getting worse and infecting more of my colon, and even surgery. I’ll take the preventative route any day! I am going to continue researching and see if there are any more natural ways to treat UC or even enhance my UC experience. I like my “woo woo” things, but am for sure thankful for Western medicine.

I’ve had this post planned since I was diagnosed and while it isn’t what I thought it would be, I’m happy to write it out. I may have cried in my car today, but overall I’m super thankful. I’m thankful that I was diagnosed pre-COVID since a colonoscopy is considered elective. I’m thankful for a great doctor, I’m thankful for insurance, I’m thankful for modern-medicine, I’m thankful I feel so good. The list goes on and on. I mentioned this in my last post, but I am trying to use the phrase “I get to” instead of “I have to”. I get to know what has been wrong with me. I get to take medication to help keep it in check. I get to go to the doctor. Changing your outlook can adjust your attitude and help in so many ways.

RANDOM THOUGHTS // HIGH LEVEL OVERVIEW

• The mesalamine suppositories kind of make me constipated. I try to “go” before I insert them in the AM and have found that this helps. It doesn’t always occur, so I just try to insert before noon.

• The mesalamine enema has brought me SO much relief. I’ve lost around 10 pounds from lessened bloating since incorporating the enemas. I do experience severe cramping when using them, but that typically lasts 5 minutes max. The discomfort has been worth the comfort received in the long run thus far.

• Note I have found that the suppositories stain, though I haven’t had the same experience with the enemas.

• Melasamine in general is wicked expensive. We have historically had a HSA account versus straight up health insurance. Before our deductible was met, my monthly meds were $700+. Luckily I was able to use GOOD RX to drastically reduce the cost, but it is still a big chunk of our wellness budget that quite frankly I’d rather spend on yoga and smoothies. Hah!

• The oral mesalamine really isn’t on my radar, though I am aware of it. The versions I use are best for my UC because it is able to directly treat the affected area! The pill version is tempting and does seem easier though.

• I’m getting my blood checked every time I go to the doctor so they can monitor my kidney levels. Mesalamine can cause liver and kidney damage.

• I have tried to steer clear of any NSAIDS. In fact I think I only took Aleve once this year. I couldn’t take them before my colonoscopy in January, so did some researching. I found out that they can exacerbate UC symptoms. Mesalamine isn’t considered an NSAID, but it does have similar side effects in the since it can affect my kidneys. I just figured this would just be better for my body in the long run. I had a really bad migraine the other weekend so I took some to get some relief and def don’t regret it. Just trying to be smart!

• Before the pandemic I was going to the chiropractor around once a week. I went to one regularly in Dallas, but hadn’t made time to find one here in LA. I read that chiropractors can help with UC, so I started seeing one after my diagnosis late January. My chiro was able to adjust my sacrum and provide some relief. I haven’t been back in 5 months due to COVID-19, but would love to get back into doing this asap. I have scoliosis, so it helps with ALL my ailments.

• Working out is essential for me. I do more yoga than anything these days, but my body, specifically my UC feels so much better when I am active. On the weekends this looks like a hike or a walk. During the week it is at least a 30 minute yoga class. Doing this helps me so much with reduction of bloating and pain.

• I have more issues with constipation than diarrhea. My go-to’s are Smooth Move Senna Leaf tea and Pique Ginger Digestion Elixer Tea. I spoke more about this here.

• I track my BM’s. Sounds crazy but it is the best way for me to make sure I'm going and keep track of symptoms, etc. I do this on my phone.

• I still think that UC was part of the problem with my acne. I’m still healing but it is A LOT better. Constant acne (versus just certain times of the month) is often a sign of gut issues.

• I have not had to edit my eating at all really because mine is a small portion of my colon / is proctitis, not full blown ulcerative colitis. I do mentally take note of what foods make me feel good and what foods make me feel bad. For example, I love Topo Chico but only have it occasionally as carbonated beverages sometimes make my bloating worse. I try to limit dairy, consume sourdough or sprouted wheat breads, and try to cook more veggies vs eating them raw. I do still have the occasional salad and eat fresh fruit constantly.

• I still need to do some research, but I do think my IBD was exacerbated by being on the pill (BeYaz and Yaz) for almost 10 years. If anyone needs me to be a part of a study, I’m happy to do so. I still need to report this to the FDA.

• I recently listened to this podcast about oral health. It is related to COVID-19 / Coronavirus, BUT it talks about how the first symptoms to show really for any disease are in the mouth. They mention UC and celiacs and I found it so interesting!! It definitely makes me want to floss better / more frequently. Worth the listen!

• I’ve shared a bit of my journey along the way. I spoke briefly about it in my colonoscopy post. I did a 3 part instagram series about what I’ve learned from UC here: part 1, part 2, part 3. I shared bloating photos here.

Black Bralette | Black Biker Shorts | Grey Sweatshirt | Emu Australia Slippers | Primally Pure Face Mask

I hope you are staying safe and well (having UC means you are immunocompromised) in this time and I hope this post was helpful or comforting to you. You aren’t alone! Listen to your body and treat it well. You’ve got this!

UPDATE 08/19/20: My Inflammation test came back and it is so much better! I’m not in remission yet, but I am on my way there. We will continue with 2 meds a day / not drop to 1 med until I can get within normal levels. For reference in January, my levels were above 1k. Normal is under 50. As of 08/14, I’m under 250. So much better, but still a ways to go.

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