“Your Normal Is Not Normal” {Colitis Update}

Mastermind Weekend 1/16

Hey there!

I'm Tina

I’m the owner of Carrots ‘N’ Cake as well as a Certified Nutrition Coach and Functional Diagnostic Nutrition Practitioner (FDN-P). I use macros and functional nutrition to help women find balance within their diets while achieving their body composition goals.

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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. 

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220 Comments

  1. It’s going to be ok!!!! You are such a strong person mentally and physically, and you are healthy in every other possible aspect of your life. I just know this is going to work for you, solve all your UC issues, and not give you any scary side effects (positive thinking!! It works!!) Q is so lucky to have you for his mommy and I know he’ll be fine too. I’ll be thinking of you guys!!

  2. I have no idea what you are going through but I am sending you lots of strength and uplifting vibes. If anyone can barrel through this, you can. you’ve got quite the support system here, and from what I can tell, Mal, Q, and Murphy are pretty great too 🙂 you got this, mama.

  3. Obviously I am sorry to hear that you aren’t doing well, and I know that Remicade can be a scary option, but it is amazing, if it is indeed the right drug for you. I have been on it for 13 years, and it honestly is the reason that I have a life at all. I hope that it works for you, Tina, I truly do. I know you have an incredible support system in place, and there is nothing better than that!

  4. I’m not one to comment on blogs and websites but I’ve been following you increasingly since being diagnosed with UC last October and then falling pregnant in January of this year. I live in the UK and also am/was a really active person, fit and obsessed with running, rock climbing, etc… I’ve also been trying SCD and then paleo with limited benefits for nearly a year, currently sticking with paleo. Your blog has given me a kick up the butt when I’m feeling low & sorry for myself. It’s really helped me when thinking about the future and treatment options. Someone told me that the first few years of diagnosis are the most difficult… soon you’ll figure out what specific treatment options work for you and you can get on with your life and forget about your colon. The majority of IBD patients reach this point and, with your amazing and informed attitude, you’re bound to be one of them.

  5. Hi Tina! I’ve been a blog reader from a while now, but rarely ever comment. I am so sorry you are dealing with this. I just wanted to let you know how much hope this post gave me. I am a 22 year old nursing student and was recently diagnosed with rheumatoid arthritis. It’s been a long 5 months of going on and off medication, and trying to figure out what is going to work best for me. Chronic inflammatory illnesses are so devastating and frustrating. Thank you so much for giving me hope and realizing that things can get better. I wish you the best of luck and hope you start to feel better soon!

  6. Hi Tina, I’ve never comments before, but as someone who was diagnosed with UC as a teenager I wanted to reach out. My situation was little abnormal, but basically I was diagnosed for the first time only a couple weeks after my first symptoms, and 3 weeks later had my colon taken out in emergency surgery. I tried to go into remission with the usual meds- prednisone, remicade, etc. but nothing worked. I remember my parents being very resistant to and apprehensive about the idea of me having surgery, but 10+ years later I can wholeheartedly say that I’m so glad I did. I eventually ended up with a j-pouch, and I live a completely normal life- no food restrictions, no meds, and I don’t have to worry about a flare since I’m technically “cured.” Anyways, I just wanted to tell you this in case surgery is something you’re considering. I’m happy to answer any questions you may have, though I’m sure it gets overwhelming with everyone’s opinions and suggestions. Best of luck, and I hope you feel better super soon. Susan

    1. @Susan: Another j-poucher here too. Sadly remicade didn’t work for me, but I hope it works for you Tina. I know it has helped many people I know through the UC/Crohn’s community. Best of luck!

  7. Longtime reader, first real comment. Thanks for your transparency here in sharing something so personal. You’re an inspiration, and you have lots of people rooting for you, me included.

  8. Hola. I have been following your blog for awhile 🙂 Congrats on the beautiful family!
    I was inspired by this post to leave a comment about your digestive issues. I was first diagnosed with IBS when I was 9, and again when I was 17. The second time I was hoping for a diagnosis of Crohne’s/colitis/celiac, just something to explain what I was going through. I finally discovered I am allergic/intolerant to soy. Which is in everything! I still have IBS which flares up, especially with stress, so I am definitely not discounting your colitis diagnosis. But, soy is in everything from salad dressing, to chocolate, to pasta (it’s a culprit in lots of sauces). So, I guess I’m just here, sharing some advice. Maybe kick soy for a couple of weeks and see if some of the flare ups aren’t so bad?

    Good luck with everything 🙂 Congrats again!

  9. I don’t have UC, so no advice here, but just wanted to send hugs your way! I know it’s scary choosing to take the Remicade, but if it works for you, you’ll be so much happier & healthier. A family friend had to go on it for terrible UC & it worked wonders for her. Fingers crossed you’ll be feeling better in no time!

  10. Hi Tina!

    I know you have tried a lot of things but I have an idea for you to try if you are interested in any more natural options before starting Remicade. I was a huge skeptic of essential oils but I had some bad stomach issues that weren’t getting solved by any medicines. Not as bad as UC but bad enough that I was having to lay in bed for hours at a time. My mom convinced me to try DigestZen (a DoTerra essential oil) and it has changed my life. There are a lot of success stories if you google DoTerra and UC. Just another idea!! 🙂

  11. I don’t have colitis, but things have also been “crappy” for me since July! I’m headed into a colonoscopy Monday and a little fearful too! I’m just hoping that this crappy situation is not my new normal! Sending good thoughts your way.

  12. My sister has had UC since she was a teenager and after a bad and really scary flare two years ago , tried Remicade. It didn’t totally stop her flares, so she started the Specific Carbohydrate Diet as a last resort (as a vegetarian at the time, it was a huge change for her.) It is not the world’s easiest diet, but it cleared up her inflammation enough to come off Remicade, and she just recently had a colonoscopy and found no inflammation for probably the first time any of us can remember. I know you’ve tried similar diets but seeing her turnaround has been amazing, so I wanted to share. You have my email (I think) if you’d like me to put you two in touch.

  13. Tina~ I am so proud of you for having the courage to take Remicade. I have no idea how you are feeling because I have never experienced this sort of thing, but one thing I do know about you is that your a BAD ASS(no pun intended😁) I have no doubt you will be okay, more than okay because you are no quitter!! “Your full of win!!”… Just know you have a fan here in San Diego and I will be rooting for you and thinking about you everyday! You are one fabulous chick and I’m proud to know you thru the pages of your blog!! Quinn is so fortunate to have a momma like you!
    Heidi

  14. Oh my goodness, Tina. I feel for you. I’ve been in a mild version of your case–I had a bad glute problem last year (not that an what I had is anything close to what you have), but it kept getting worse and worse until I had a hard time walking. No one could figure out what was wrong with me. Was it muscular, neurological, spinal? So I got into this dark place in my mind where I thought of my life 10 years in the future, when I couldn’t walk and would have to use a wheelchair because no one knew what was wrong with me. Of course, that’s not reality, and I eventually found a wonderful team of people who helped me figure out what was wrong, fixed it, and helped me figure out ways for preventing it from coming back.
    I tell you this because you will figure out a way to make this better. You’ve already been so proactive with your health that I have no doubt with the right team, the support of your loved ones and friends, and your own inner strength, you’ll make it through this bout. When you’re in it it’s hard to imagine being out of it, but remember to take it one day at a time. I know, easier said than done, but try to remain in the moment. We can’t predict the future, so there’s no reason to go there.
    In the mean time, have you tried meditation? Not to fix your UC, but to help you deal with the stress of having it. It’s one of those things I hear amazing things about and keep meaning to look into more, but never seem to make the time for. I’ve heard a lot of good things about EFT in particular.
    I’ll be thinking about you. Know we’re all here (virtually) to support you!

  15. Hey Tina- While I don’t have any GI issues myself, my husband (who is about your age I think, early 30s), has had Crohn’s since age 19. His course of illness sounds a lot like yours…medications, flare, remission, over and over. After trying all the typical meds and still being sick for 6 mos, and losing 30 lbs (pounds that he did NOT need to lose!), his GI MD recommended remicaid. That was about 3 years ago, and while he has had some minor flares, repeat colonoscopies have shown that he his basically in long term remission now 🙂 it’s not so scary, and while it totally, totally sucks, I hope it works out for you too. A couple of tips- the appts are long, so my husband usually brings a book, music, and laptop with a movie or some shows loaded onto it. In terms of finances, it is crazy expensive, even with our insurance, but the drug manufacturer offers a program called Remistart that helps to reimburse some of your out of pocket costs, which is tremendously helpful for us (sorry if some one has already mentioned this in the comments). Anyway, take care and good luck!!!!

  16. So sorry you are going through this. It has to be incredibly difficult to deal with this after having had 9 months of remission and doing so during a time when you should be loving life with your little guy and not dealing with health issues. Best of luck to you and hopeful this will help you more than you can imagine!

  17. Tina, my husband has UC. He hasn’t had a major flare since before we were married. Thankfully, that was the last time he was on steroids. However, he would have small “urge” episodes if that makes sense. His doctor continued to recommend a fairly dramatic diet change (basically eliminating all gluten, sugars, dairy, fruits, grains, caffeine, etc). We didn’t feel like this was practical and he decided that gluten would be the “easiest” thing to eliminate. He tried it and didn’t feel like it worked. However, a few months after stopping he was still having symptoms and decided to try again. At this point, he noticed a fairly big difference. He doesn’t have a gluten allergy but we feel like the volume of gluten he was eating previously did lead to more inflammation. Obviously, this doesn’t work for everyone (and I feel like sometimes you have mentioned that you do gluten free options?) but it has helped his symptoms – in addition to daily medication. He does occasionally “cheat” and we don’t stress over tiny bits of gluten but I do all his baking and sandwiches gluten free. No experience with Remicade for UC (though I know that we use it frequently for other inflammatory processes in rheumatology and neurology leading to some pretty dramatic responses!). I hope that your response is exactly what you’re hoping!

  18. Long-time reader, first comment. I just wanted to say that I am sorry you are going through all of this, and I sincerely hope you find a new, better normal. Hugs to you through the interwebs 🙂

  19. Diagnosed with UC at 11 and was totally steroid-dependent for years. Tried remicade, which worked for a few months and it did not do a whole lot for me. Ended up getting a total colectomy after my 13th birthday”¦.I don’t mean that to sound scary lol, I’ve had zero GI issues since! I did not experience any adverse effects from remicade, and have heard MANY stories of remicade working miracles for people! Fingers crossed for you. If you have any questions feel free to shoot an email

  20. Oh, Tina. I’m so sorry. There can be a very good “new normal.” I’ve been pretty much flare free since finding the right mix of UC meds about a decade ago. And, life can be so good when you do find that mix (I often forget I have it). I hope and pray this works for you. You will find something that works! Also, I know it’s hard with a newborn, but you really do need sleep. I hope you can stop the steroids soon so your body can rest and fight this nasty illness. Good luck!

  21. As a GI infusion nurse that gives Remicade daily, I have watched lives completely change from this drug. Of course no one wants to be dependent on medication, but the improved quality of life for most people is what keeps them coming back every 8 weeks. I tell my patients that you only have to come in 6 times a year once you are through the initial “loading doses”. As far as expense, Remicade has a very generous co-pay assistance program (remitstart) that gives up to 8,000$ a year to meet deductibles, etc. Good luck and I hope you start feeling better soon!

  22. Tina, my heart goes out to you for this cross you have to bear. As Kris Carr (wellness-warrior/ “Crazy-Sexy-Cancer” goddess) reminds us all – we have to tell ourselves every day “I am healthy, I am strong, I am beautiful.” You ARE healthy. Keep saying it over and over. That healthy spirit will make you well again. I mean, it’s not every “healthy” person that can do Cross Fit like you do? I would be on my fanny or face down on the floor. Try not to think yourself as sick. It sucks, I know, but UC does make you who you are. You have got me turned onto overnight oats, chia seeds, almond butter (OMG) and other healthy tips. You inspire others to be healthy like you. As a last note, I battle “flare-ups” with chronic lyme disease, that can also suck, and acupuncture helps me tremendously, and I believe may you, too. So, if you ever are seeking an alternative relief, I’ll give you my acupuncturist’s name in the South Shore. She’s a miracle worker.

  23. Your post made my heart sink with a bit of watery eyes. I can’t imagine what you are going through and how hard it would be, but I thank you for sharing your journey. It’s a great reminder to all of us that we should stop being so hard on ourselves and be thankful for what we have…our health. I know you don’t feel healthy right now, but you WILL get better. It sounds like you have an amazing support system and Mal seems like a wonderful husband who knows just what you need when times are tough. 🙂 Hang in there!

    Keeping you in my thoughts and prayers!

  24. Nothing but respect and compassion for you Tina. Nothing about what you shared is a downer; it is honesty that goes a long way to making others feel less alone. I am struggling physically with something. This no-named beast has robbed me of so much physically and very much mentally. It is just how you were told- this is not normal. I am not much in favour of harsh drugs but from a perspective where I WISH I knew SOMETHING that would help me- take the medicine! It is more of a hardship not knowing what to do, where to turn to next and how to go forward. Best of luck!

  25. It’s going to be okay Tina, I know that this is a scary thing for you, and it’s okay to express your emotions, if you want to cry or scream just let it out. Keep the faith, and everything will turn out fine.

  26. You are an amazingly strong woman with a wonderful family! I know you’ll be fine. Thank you for being so honest with your story!

  27. Oh, honey! Chronic illness sucks. No other way around it. It’ll be ok. It will. Do whatever you need to do to feel your best. In the long run, it’s worth it. I hate some meds I have to take, but as my husband says, I like you better when you can breathe…. And I do too. Good luck!

      1. personally….my fave….keeping the romance alive!! I laughed and laughed. I also loved the well balanced diet…eating the dog kibble.

  28. I have been enjoying your blog and was quite upset to read aboutt about your health issues. Have you looked into going to a Naturopathic Dr for treatment? I hate mainstream drs and always go to a Naturopathic Dr for every health issue. I bet some of your readers will know of a few to look into.

    I will be praying for you and I hope that you will get this health issue fixed soon.

    Sending hugs to you from Tx.

  29. Have you tried omitting wheat from your diet? There is also a good book called Wheat Belly. You might want to google it and see if it would help to avoid wheat and hopefully cure your colitis.

    Hang in there.

  30. Sorry you had tough morning. When you are so healthy otherwise it’s hard to fathom when you have an illness. You will get through this and you will be o.k. Stay strong and go get some pug/baby/Mal love.

    <3
    Nicole

  31. It’s going to be okay Tina. It sucks you have to deal with this, but at least there are treatments out there available for you to try. Stay strong! Getting your sweat on is a great way to chase those blues away- I need to remember that too!

  32. My brother suffered from colitis and had his large intestine removed. He still had flares … Comes to find tout that he was misdiagnosed and has chrons disease and started Remicade a few moths back. He has been flare free and living a normal life. Everything is going to be okay. He said he wished he did this a long time ago.

  33. I’ve been following your blog for YEARS! But kind of trailed off for a while and am glad to be back. I hope you are getting to feel better and am so happy to see the little man as well! Will keep you in my thoughts!

  34. Hi Tina, I am one of your regular Carrots ‘n’ Cake readers and was sad to hear about your recent health situation. I suffered from IB for quite a long time before taking the plunge and going primal. During the first few weeks I felt like I needed my usual treat foods and I found a great website http://glutenfreefix.com/ which is written by a lovely lady called Michelle who trained as a pastry chef. She was diagnosed with Crohn’s disease after having her third child and after trying the drugs route is controlling her symptoms with the Specific Carbohydrate Diet which other people on here have mentioned. Her recipes are absolutely fantastic and she is so inspiring. I thought it might be something you might be interested in.

    Congratulations on the safe arrival of Quinn – he looks gorgeous! and I hope you’re feeling much better soon.

    Best wishes,

    Melissa

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