“Your Normal Is Not Normal” {Colitis Update}

Blah. This colitis update isn’t going to be a fun one to write.

Ok, so let me catch you up to speed”¦

  • June 2011: First diagnosed with UC after a bad flare. Get better. Stop taking meds.
  • February 2012: Second flare. Get better. Stop taking meds. (Clearly, I don’t learn.)
  • July 2012: Third flare. Stay on meds this time, but I become steroid-dependent. Go on and off steroids to control flare symptoms for the next 14 months. During this time, I try all sorts of things to fix myself with no luck.
  • September 2013: Get pregnant. All UC symptoms go away for 9 glorious months.
  • May 2014: Minor flare. Try all the usual 5-ASA drugs with no luck and eventually go back on steroids.
  • June 2014: Give birth. All flare symptoms go away.
  • July 2014: Start flaring again. Do the usual med game with no luck and eventually go back on steroids.

Since July, things were pretty great. I started at 10mg of Prednisone and slowly tapered my way down to 2.5mg without any issues. I was even at 2.5mg for 10 wonderful days. I actually thought I was going to get off steroids once and for all. Unfortunately, right when I was about to starting taking the 2.5mg every other day, I started feeling the typical UC symptoms. I hoped and prayed they’d go away, but things only intensified, so I’m back at 10mg of Prednisone. Unfortunately, it isn’t doing much, except keeping me up at night, which, with a newborn, means I am not sleeping at all. Basically, things are really crappy (pun intended) right now and we’re looking into more “intense” drugs to get things under control.

My doctor thinks Remicade is the best option for both me and Quinn, mostly so I can continue breastfeeding. (I checked with Q’s pediatrician about Remicade, and she said it was okay too.) I’m really scared about taking such a hardcore drug and worry so much about the side effects (leukemia, Lupus). And, truthfully, I wasn’t totally on board with this option until talking to my doctor’s Nurse Practioner, Meg, on Tuesday.

Meg is an awesome woman and totally straight-forward. She’s not someone who sugarcoats things, and I love that about her (and people, in general, like my husband, who will tell me if my breath smells like “cat nuggets” because that might have happened the other day). Meg and I started talking about trying the usual arsenal of drugs that I’ve tried a million times in the past. I knew deep down they probably wouldn’t work, but I didn’t want to take things up a notch with Remicade either.

I was so frustrated with being sick all the time and nothing working to get me 100% well, so my voice started to get shaky. I was on the verge of crying, and Meg saw that I was getting upset, so she looked at me and said, in the nicest way possible: “Your normal is not normal.” Basically, living the way I was currently living was no way to live. Life could be so much better. I could be so much better. Of course, her saying this immediately made me burst into tears because I knew she was right. This disease makes me so unhappy, and I could get healthy once and for all, so I am finally going to try the Remicade route.

As I mentioned above, Remicade is an intense drug, so before I can start it, there are a few things we need to do first. I had a bunch of blood work done, Meg put in a prior-approval with my health insurance company (Remicade is expensive), and I’m having a colonoscopy next week. So, it looks like this is really happening. I’m mostly okay with it all, but I’m scared. And sad. I never really thought of myself as sick person. Maybe it’s the fact that I have to go to the hospital every 8 weeks for a 3-hour infusion for the rest of my life (or until Remicade stops working). I dunno. Maybe once I’m feeling better, I won’t think this way anymore. (Side note: Hopefully, Remicade works. There’s actually a somewhat high probability it won’t work at all and we’ll have to look into other options.)

So, yea. Tuesday wasn’t a fun day at the doctor’s office, but, thankfully, I had these two handsome guys to keep me company and give me hugs when I needed them.

my favorites

Ok, so all of that was kind of depressing. Sorry. BUT, my day got a whole lot better after leaving the hospital!

After a long morning at MGH, Mal and I were starving. We thought about grabbing lunch somewhere close to the hospital (Anna’s!), but then we remembered the potential rush hour traffic, so we hit the road and grabbed lunch closer to home. We ended up at the Rustic Kitchen, which is one of our favorite places with outdoor seating. It was a beautiful afternoon, so we took advantage of the weather and snagged a table outside.

As soon as the bread and white bean dip arrived at our table, Mal and I totally housed it! We were SO HUNGRY! Haha!

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For my meal, I ordered a salad with grilled salmon, which was delicious and just what I wanted.

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After lunch, I headed out for a quick run with Kerrie. Over the weekend, we made plans to run together on Tuesday afternoon, but I almost canceled on her. My doctor’s appointment was so emotionally draining for me, I really wasn’t in the mood to run. I honestly just wanted to curl up in bed and cry.

Just when I was about to tell Kerrie I wasn’t coming, Mal encouraged me to go and reminded me that running would likely make me feel better. I knew he was right, so I got dressed, hopped in the car, and met Kerrie for a 3-mile run. Maybe she needed a good run too because the two of us ran fast and hard, and it felt so great to get moving. I felt a zillion times better after sweating it out. Hey, sometimes you just need to make yourself do what you know is good for you even if you don’t want to do it.

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My day ended with One Pan Roasted Sweet Potato and Black Bean Enchiladas and a glass of (much-needed) wine.

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The end.

Questions of the Day

IBD peeps: How are things? What got you into remission? Any Remicade experiences you want to share?

Everyone else: Please tell me it’s going to be okay. Thank you. You’re the best. 

220 Comments

  1. I feel your pain, I have Crohn’s with UC (diagnosed in Oct 2013) and your exactly right, our normal is not normal. My Doctor wanted to start me on Humira but something in my gut said no (turns out I was pregnant) and so far I have been doing fine without it. I have been on Lialda which is a localized anti-inflammatory (work by contacting the colon) and it really seems to help. I also have to keep a strict gluten and (almost) sugar free diet. I am currently 14 weeks pregnant so I guess I will have to wait and see how my body reacts after I give birth. Good luck with your UC journey to recovery!

  2. have you ever thought about making dietary changes? while i don’t have UC or IBD, i do have IBS. i’ve been following the FODMAP diet for the past few months, and it’s helped SO much! i mean, my symptoms are almost entirely gone! yes, it’s really strict, and sometimes difficult, but totally worth it in my opinion. also, i’ve been going to the marino center for integrative health in Cambridge, and they’ve been a lot more helpful than docs i’ve seen elsewhere. good luck!

  3. Oh how I feel your pain!
    I also suffer from an auto-immune disease, but in my case it’s chronic hives. I developed it summer 2011 and after bouts of prednisone and an intense antihisthamine routine, it seemed to have burned out by Jan 2012. I got pregnant Sept 2012 and was completely symptom free until 3 months ago. My daughter is now 16 months old and I am still nursing 2x a day. I’ve been hesitant about drugs since I am still nursing, but I’ve almost hit the point where I need to do something. (Waking in the morning covered with hives + having swollen eyes and lips just isn’t fun anymore.) Did you notice any issues/changes in your breastfeeding while taking Prednisone?? I’m thinking that’s my only “affordable” option is to go back on Prednisone to burn the hives out again, but I still want to continue breastfeeding..

  4. Dear Tina:

    You absolutely WILL get through this with flying colors. We are so lucky to be living in a time when at least there are options to try…I lost many family members in the 60’s and 70’s to illnesses that are so treatable now. Great idea to reach out to other folks who have tried the meds you are considering.

    All our love from Atlanta!

  5. Tina
    I’m so sorry to hear your struggles with UC. Ugh, it totally sucks. I am pregnant (35 1/2 weeks) and also have UC but remains in remission since December 2012! I’ve battled with all you have , and know that the only aspect of the disease is feeling well and being able to LIVE your life! No one can know the pain and inconvenience of the disease unless you yourself suffer.

    I can imagine being a new mom with a flare is challenging and now difficult decisions have to be made….oh man. I will be thinking and praying for you.

    People ask what I’m most anxious about after having the baby, my response is always a flareup.

  6. Hi Tina,
    I am thinking of you. I know it will be okay — you are strong, your family is strong, and your attitude is always inspiring to me, even when you may not feel your best. I am sending you a huge hug.

  7. I have UC and my last flare was October 2012- February 2013. I am intolerant of salicylates which is a natural chemical in almost all plants, and after much trial and error I am sure of it. Other people in my family also are intolerant including my daughter. I have a MS in biology and I am currently preparing to sit for my RD exam. I have thoroughly researched the link between salicylate intolerance and UC. The only med that cold control my flares were prednisone. The 5-ASA does not because it is a salicylate. In fact it made me sicker. The hardest part is controlling salicylate intake from food. And then seasonally it is in the air in spring and fall, which I cant control. But,through limiting dietary salicylates and medications and products that contain them, I do believe I am helping to off-set another flare. Maybe, you should try an elimination diet and see if this affects you. It may not, but for me finding out about it really changed my life.

  8. I completely understand what you are going through. I was diagnosed with MS last year. It took a ton of tests and then needing to determine the medication that I will be on for the rest of my life. None of the medication options seemed pleasant, but you have to do what will work best for you. Be strong, you can handle this. You are blessed with what it seems a very supportive family. Lean on them if you need to.

  9. My little brother (age 23) has been on Remicade for about 2 years now after a similar, frustrating history of nothing working for his UC. It has been working SO WELL for him! He finally feels “normal” and human. He also has terrible allergies (anaphylactic to peanuts is the major one) and he did react to the Remicade once or twice. I’m not sure if that is normal but don’t be discouraged if it happens to you. Overall, the infusions and the two allergic reactions have been worth it. I just wanted to share my brother’s positive experience with Remicade in hopes of easing your fears a bit! It has really given him his life back. Let me know if you want to hear more – I can always put you two in touch. GOOD LUCK! Sending well wishes your way!

  10. I’m so sorry to hear you are still struggling with this. I have multiple autoimmune issues and have finally been experiencing some success. I read a book called The Paleo Approach by Sara Ballantyne. It is amazing! Knowledge is power and it cleared so much up for me. Praying you find some healing whatever route you decide to take.

  11. You got this GF! I’m so sorry your going through such a tough time! Thankfully you have the love and support you need to get you through this. Things WILL get better.

  12. Hey Tina,

    I’m a bit late reading this post but it breaks my heart. I don’t have UC, but I work in a GI clinic pretty often (I was there today) and I can tell you two things:
    1) The colonoscopy is going to be a piece of cake so don’t be nervous about it. I do anesthesia for these procedures all the time and everyone tells me they are so nervous beforehand, and then they wake up saying “That was easy! I just took a nap and it’s done!”. Just wanted to take that one worry off of your mind.
    2) I see patients who have found relief for their colitis all the time. I don’t know everything about it, since I don’t administer the Remicade or prescribe anything else these folks take for UC, but I can tell you that I see people who have healed. I see the inside of their intestines (weird, I know- but it’s on the screen in the colonoscopy room) and I can see where the damage has been done and where it has healed.

    So I guess what I want to tell you is that there is hope. It totally sucks that you have to deal with it, but it can get better and your life can improve drastically. I wish you all the best and if you lived where I live I would tell you to come see us so I could hook you up for the colonoscopy! 🙂 Instead, I’ll send long-distance good vibes and hopefully a smidgen of reassurance.

  13. My mom has been on Remicade for crohns/colitis for nearly 10 years with great results and few side effects. She uses the 2+ hour infusion time as “her” time:) I hope it works for you as well!!

  14. Hi Tina, I was first diagnosed with UC in Aug of 2012 during a big flare. I had a second during December of last year, and currently going through another one since the beginning of September. After my second flare, I started on Remicade. I never read up on all the horror stories, and honestly my GI downplayed the side effects. I’ve been on it since January with no side effects. The only negative response would be from the IV running a bit too fast, which would make me itchy. While I haven’t had negative side effects, and the infusions seemed to help with flares, my GI just recently ordered a test to see how much Remicade I’ve stored in my system over nine months. Turns out; zero. So I am seeing him Tuesday to discuss alternative solutions.

    I guess my point in telling you this is so you do not stress about the Remicade. There are plenty of people like me who have had a number of infusions with only positive results. Sitting on an IV for a few hours every eight weeks VASTLY outweighs taking steroids IMHO.

  15. I’m so sorry to hear that your UC has gotten worse and unresponsive to other therapies. I work in the pharmaceutical industry and have much of knowledge of the biologic drugs such a Remicade, and I wanted to let you know that Remicade is not necessarily a “scary” drug. It is a lifesaver and lifechanger for many people, and the chance of those extreme side effects you mention may be low in comparison to the immense benefits you will gain once you start therapy. Also- if you are uncomfortable going to the hospital every 8 weeks, there are other biologic drugs that are injectables (Humira, for example- however, I am not a medical practitioner in any way and there may be a reason your doctor didn’t start you on that specific drug).

    Anyway, just writing to hopefully reassure you a bit not to be scared, but rather to be excited to start a life-changing treatment. I wish you all the best <3

  16. Hugs to you, Tina. I don’t have IBD but I do have a chronic illness that has been very debilitating to me, making it hard to walk when I have flare ups and prohibiting me from working. I know how hard it is. I get so down sometimes, especially when I get better and then go backwards. Hang in there!

  17. Awww, Tina! I just read this post and I am so sorry you’re going through all of this. From reading your blog for many years, and seeing you accomplish so much, I know you will find something that will help you control your UC symptoms so you can feel 100% healthy! You are such an inspiration, and you’re so strong! Thank you for sharing this part of your life with us readers. I am sending you lots of positive thoughts and support!

  18. So sorry to hear you’re going through this, especially with a baby! I don’t personally have IBD, but have worked with lots of teenagers who do and know how frustrating it can be. I give you lots of credit for keeping strong and working out and living a healthy lifestyle despite it. You are an inspiration to many people! Hopefully the remicade will do the trick for you!

  19. You are a strong lady and you will get through these challenges!!!!
    You may have mentioned this, but did the doctors mention if a hormonal pill could have a similar effect as pregnancy, causing possible remission?

  20. Hi Tina,
    So sorry this is happening to you and your baby is getting cutter by the minute. Probably you have heard about Danielle Walker from Against all grain, she went through something like you are and with a diet she is better now, if you read her story she also had to take steroids. Maybe check her blog or even contact her (I got to meet her yesterday at a book signing and she is beautiful and friendly : ) Hope you get better soon.

    http://againstallgrain.com/2013/07/13/my-health-transformation/

  21. Hi, Tina. My friend has UC and he drinks WINE WITHOUT SULFITES. Not sure if you’ve tried this, but he said he notices that regular wine worsens his symptoms, and the sulfite-free does not. Every little bit helps. 🙂 Also, have you tried Humira? I didn’t see that on your list. It is also a tough one to get insurance companies to approve, but at least it is another option to try. Best of luck to you – I know it is a tough battle.

  22. Hey Tina,

    I know EXACTLY what you’re going through. It’s an emotional roller coaster. I had the same type of breakdown after I had my daughter in April of last year. UC has turned my life upside down. Just like you, I was completely fine during my pregnancy. Then boom 2 months after giving birth. I was extremely sick. A year later I’m on 6-mp the only drug that seems to be working. I have also been seeing a naturopath which has helped immensely. I know remicade is a tough choice but if helps you function to the fullest for your baby, and makes you feel normal it may be the best thing for you! Good luck 🙂

  23. Tina-My husband was diagnosed with UC about 5 years ago and started Remicade almost two years ago. I was very nervous at the thought of drugs being infused into his system, but his doctors assured me that if it was safe enough for new mothers it’s safe enough for him. So far, it’s been working great. He’s very active – he runs almost every day and coaches volleyball. After a few months of my strongly suggesting (nagging!) he finally went gluten-free. His change in diet + the Remicade and he’s been flare-free for over a year. He takes Lialda as well, and since he’s been feeling so good, he’s going to talk to his doctor tomorrow about decreasing the dosage!
    Hoping one little success story calms your nerves a bit 🙂 Hang in there!! You UC’ers are the strongest bunch I know!

  24. Hey, Tina. We emailed briefly a while ago about auto-immune drugs and my battle with them too. I know it’s scary. IT IS. But again, once I got through the emotions and fear of “giving in” to the stronger, scarier meds… my life changed. I’m so much happier! Does it suck to have to give myself shots every 3 months? YUP. But the tradeoff is that my “normal” is back to “almost normal”, with slight adjustments. And yours will be, too. Lots of love. ~Peach

  25. Sorry to hear about this! Is fecal transplant an option for you? I was just reading that they have “poop pills” now and that it’s not nearly as bad as it sounds with high success rate.

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