I had my second Remicade infusion yesterday morning, but before I headed into the city for my appointment, I had a nice morning with my boys.
I ate breakfast with Mal.
And then we headed outside with Quinn and Murphy for a family walk.
It was a chilly morning, so I broke out our winter gear for the season.
We walked for about 30 minutes and then Mal drove me to the T, so I could head into the city.
I arrived at Charles/MGH with about 15 minutes to spare before my appointment, so I stopped into the nearby Whole Foods for an iced soy latte and second breakfast.
Second breakfast = the best.
I worked non-stop during my nearly 3-hour infusion. (I’m feeling a lot better, and I’m down to 20mg of Prednisone!) Mal sent me cute baby and pugs pics while I was at the hospital.
When I got home, we snapped Quinn’s 5-month pic. I can’t believe how big he is getting!
Then I snacked on a whole wheat wrap with almond butter, pumpkin cream cheese, and banana slices inside. Oh, yes, it was delicious!
I also drank a big mug of Sugar Cookie Sleigh Ride, which is my favorite holiday tea.
So, I’ve been meaning to put all of this info in one place for awhile now. I get so many questions about UC stuff, and I thought it would be helpful to anyone struggling with IBD or who was recently diagnosed. I definitely don’t have all of the answers, but I am more than willing to share my experiences and offer any sort of support that I can. IBD is a terribly frustrating disease and if there is anything I can do to make it easier for someone who is dealing with it, I am more than happy to help.
Here’s a quick history and background of my disease: I was diagnosed with Ulcerative Colitis in June 2011 right before I turned 31 years old. It came out of nowhere and no one in my family has IBD or autoimmune diseases. I guess I am just lucky. Here’s a little timeline of how my disease has played out over the years.
Below I have listed all of the different things I’ve tried over the years to get my symptoms and flares under control. Besides Prednisone and pregnancy, nothing I did ever made me 100% healthy. I always had some sort of symptoms. However, I don’t regret trying any of these things one bit. I needed to try them. I needed to know if they would work or not. Unfortunately, things didn’t work out for me, but they might for someone else. I’ve heard so many successful stories of IBD patients managing their disease with things other than drugs, so I know it’s possible, and I want to make others aware of what’s out there. (Obviously, I am not a doctor, so please talk to yours before trying any of these things.)
Clearly, remission without “hardcore” (immunosuppressor) drugs wasn’t in the cards for me, so, with that said, here’s a list of everything I tried before Remicade. Various blog posts are linked below, so check them out for additional information. And, of course, feel free to contact me if you have specific questions. I’ll do my best to answer them.
- Uceris <— I paid $900 for it and it didn’t work at all!
- Prednisone <— The only drug that worked.
- Specific Carbohydrate Diet (SCD)
- Paleo/Whole 9
- Autoimmune Protocol (AIP)
- Avoiding salicylates
- Drinking bone broth
- Probiotics (VSL3, VSL3 DS, Natren Healthy Trinity)
- Tumero Active
- Resvero Active
- Super Oxicell
- Nitric Balance
- Ultra D (high dose of vitamin D)
- Gastro ULC
- Glutathione Recycler
- Wheat grass
- Aloe vera
- Food sensitivities
- GI Effects Microbial Ecology Profile (stool test)
- Intestinal Antigenic Permeability Screen
- Nutritional Response Therapy
STOPPING HIGH-INTENSITY EXERCISE
Chicco TRE Giveaway
Thanks to everyone who entered to win a high-performance TRE jogging stroller from Chicco! Here is your winner:
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Questions of the Day
Have you ever struggled with a chronic disease? What ultimately put you into remission/made you healthy?
Very considerate of you to link and write all the ailments/suggestions! I’m sure paleo would work for youx given you try it the right way and if that still does work, it might be that a keto diet would. i know its helped me thus far!
Also, does that sugar cookie sleigh ride have any caffeine or sugar?
@Linda @ The Fitty: Seriously? “If she tried it [Paleo] the right way”? I think at this point she’s done it all, including Paleo.
@E.W.: I agree. Diet doesn’t always work in healing IBD – I think this list clearly demonstrates that!!!
In my experience, eating well or adhering to certain diets can make you feel better while you are healthy, but good luck using diet to get out of a flare!!! I have the same disease and practically the same list of things I’ve tried and for some it just doesn’t work. Every body responds to things differently
It would be helpful to stop blaming the patient and start understanding the issue.
@Linda @ The Fitty:
“i know its helped me thus far!”
Do you have UC?
@Linda @ The Fitty: oh you’re sure it would work? you’re sure it would work for an incurable autoimmune disease? What an ignorant statement
It’s amazing how much you can try before anything works! I’m really hoping this treatment works out for you. I have had IBS since I was a kid and over the years it’s caused major pain and anxiety. With paleo and low FODMAP I seem to have gotten rid of the worst symptoms so it’s been amazing. But with IBD it’s more about finding the right med/diet combo. Crossing fingers for you, and thanks for putting all the info out there as I know it will help so many people!
How does it effect you with running? Are you worried about training for the marathon?
Running/exercise doesn’t affect my symptoms, so I’m not worried at all about marathon training! ðŸ˜„ðŸ‘
@Tina: That’s good! That would be a bummer if it aggravated your training.
So happy to hear you are starting to feel better. Feeling ill constantly is no fun! I’ve currently been struggling with some type of medical issue for about two and a half years now but have yet to figure out quite what it is. I think it has to do with my digestive track and a dairy free/gluten free diet has helped it a lot but stress aggregates it a ton. Still trying to figure is out what is going on. I would love to go to a functional medicine doctor but it typically isnt covered under insurance, a huge hindrance.
Glad to hear you are feeling better!! I need that pumpkin cream cheese wrap in my life asap.
You have tried so many different things- I am glad you are finally doing better! Good for you for not giving up and doing everything you can to get rid of your symptoms. I have never suffered from anything as instead as colitis, but I did struggle with hypothalamic amenorrhea. Like you, I tried everything I could think of to get healthy again. With each failure came some major disappointment. In the end I had to cut out all forms of exercise and gain a ton of weight but it was worth it. I am really hoping that Remicade will get your symptoms under control and help you get healthy!
I’m sorry it’s been such a long and difficult journey for you, but I think it’s great that you share your experiences on CNC. I’m a medical social worker, and I work with people on coping with chronic illnesses. I know that it would be comforting for many of my patients to read and learn about someone else’s experience.
Thanks for sharing Tina! The 5mos picture of Quinn and Murphy is adorbs!
I’m so glad the infusions are helping you feel better. I can’t believe Quinn is already five months old! Where does the time go?
Wow, my friend, you have really been through the ringer, as I have observed over my years of reading your blog. I myself am heading in for my Remicade infusion today! Nearly 13 years on it–it is my liquid gold. That said, those 13 years on it haven’t been perfect, and there was a year of struggle that lead up to starting it, there have been flares throughout, and I am still not in remission–I likely never will be. I am well managed, and I am so, so thankful for that.
Dealing with a chronic illness is a lot like having to run a marathon that you never wanted to–you HAVE to do the speed work. You HAVE to do the long runs. But over time, you start to find things that you don’t mind quite as much as you did initially. I will never love colonoscopies, or having to pay my lovely insurance bills, but I look forward to my Remicade appointments because it is time just for me–they do my mind and my body good. I don’t like taking all my pills every night, or my Methotrexate shot every week, but they keep me healthy and enable me to go after the life that I want for myself. Do I like to have to take extra special care of myself all the time? No, but with that I have learned more about my body than many people could ever dream about knowing of their own, and I am incredibly self aware and attuned to potential issues, which serves me well in my training. Then again, I can be as stubborn as anyone and not want to admit when something is wrong!
I am so happy to hear that you are feeling better–I really, truly, wholeheartedly hope that Remicade can also be your miracle drug.
My dermatologist has been having a lot of trouble lately and they are doing tests to see if she has UC – which they assume she has. I should forward her this post so she can see your check list of things you’re doing and what’s helping. Always helps to find tips from others!
I have the Sugar Cookie Sleigh Ride tea and love it too!!
I commend you for trying all of those options and being so open minded! Many people flat out refuse drugs and other various treatments and won’t even consider them. Mind you, as someone who also has U.C, I wish I didn’t have to go on some of the things I’ve had to, but mostly because of the awful side effects. If there’s a potential of something working, I will try it! I have been on Imuran for about 2 years now and it seems to work beautifully and thankfully I did not need to go down the Remicade route. Different things work for different people I suppose. Have you heard about fecal transplants? Not sure how prominent they are in the U.S, but they are doing some testing of it in Canada, and I have heard about some success from it.
They’re not approved here for UC, but hopefully they will soon!
I’m a fellow autoimmune sufferer – I have rheumatoid arthritis. Like you, I have tried many things to “cure”myself from strict dietary protocols to mountains of supplements to coffee enemas etc . Still, I have to take autoimmune suppressors to keep myself functioning at a semi normal level. I’m totally convinced that autoimmune is related to gut health and in time we will see these diseases actually cured (not just suppression of symptoms) through the use of probiotics and fecal transplants etc. Here is a good two part TV series from Australia on the subject, including a section about a woman who’s chohns or UC (can’t remember which) was cured by fecal transplant.
Best of luck on your journey Tina xx
I’ve actually watched those! They were really good. Thank you for sharing the links!! 🙂
I’ve suffered from migraines since I hit puberty. They suck! Luckily I have been good for the past few month and on no medications!! Yay!
You are amazing!!! Such an inspiration. I can’t begin to think of adding an (infant) into the mix. I’m a dietitian who used to work with ppl w/ UC, and I know it can get super irritating when everyone tries to throw in their 2 cents on what you should do, or how you should eat, when you have exhausted every avenue on your own. Hang in there! You are in my prayers. And, you really are the best!!!! Love your blog.
I am so glad the Remicade is making you feel better. I’m hoping that it works long term for you! I can’t believe all of the things you’ve tried in three short years. So crazy!
I have dealt with thyroid issues for 4 years, and I just developed some psoriasis on my hands and feet. I guess when you have one auto-immune disorder, it greatens your chances of getting more. Thankfully the psoriasis isn’t that bad and it hasn’t spread anywhere else!
I have Hashimoto’s Thyroiditis and people ALWAYS told me that I could “fix my thyroid with diet” and to “follow the autoimmune protocol.” I did all of those things and while Paleo did help with feeling better being totally strict on autoimmune didn’t help me at all. It actually made things worse for me because I removed a lot of carbohydrates. The only thing that worked for me was having my thyroid removed which I got a TON of flack about but you have to do what is right for you. Regardless of what anyone thinks it is your life and you have to take the medicine or follow the treatment that is making you feel best, all others be damned!
You are a warrior Tina! I am so happy that you are feeling better with your current treatment. I hope that things continue to improve for you. Super cute 5 month pic of Quinn. He is getting so big 🙂
Wow, Quinn looks so much like Mal in that 5 month picture! You have such cute kiddos!
First, Quinn is ridiculously cute. Second, thanks for sharing all about your UC. The most important thing though is that you are feeling better. YAY! Happy to read that.
I’ve been suffering from IBS since I was a child. Growing up, I had really bad ear infections and I was on antibiotics for them until I was 15 (don’t let the doctor overprescribe antibiotics to Quinn!!!). The antibiotics they used have recently been linked to causing IBS. It killed a lot of my gut flora. Boo. I went vegan for 6 months to see if I could fix it “holistically”. Vegetables are a trigger for me so I don’t know why I thought that would work. Hah! I’ve tried a few different probiotics that didn’t work but I’ve been on Align for the past 2 weeks and it’s been helping a bit. I started a C25k program a few weeks ago and I’ve found that I can’t seen to get 20 minutes of running in without my symptoms starting up. Super sucks.
I’m glad your current treatment is going well so far! I hope it continues to!! I’ve suffered from chronic migraines and IBS in the past, both are primarily triggered by stress. Finishing graduate school majorly reduced the number of episodes I have thank goodness. It’s crazy how stress affects your body.
I feel your frustrations. I suffered that same nightmare since 2005. After reaching the “been there, done that” stage, I had an ileostomy and a reversal 4 months later. Now I’m living pain free and symptom free.
You poor thing. I haven’t struggled with a disease, and sure hope that your information helps others with the same issues. At least you got some work done during your treatment!
I have asthma and I’ve definitely gone through spurts of trying to get it under control. My last few months living in LA I was in the ER twice unable to breathe on my own or with the help of my inhaler. When I got back to IL and started seeing a chiropractor, that was ultimately what helped me (mixed with consistent exercise). I love finding alternative medicine options that help me!
I just want you to know how inspiring you are; that’s all. 🙂
My mom’s dealt with IBS for years and its so stressful for her. She always worries about traveling. I have been dealing with a foot issue (I can point my toe, but I can’t pull it back up, so I smack my foot on the ground) and they can’t figure out what it is. It’s so frustrating. One person is saying not to run, another doctor says its fine if I do. Ugg! I hope the new treatment works for you!!
Awwww that is so flippin sweet that Mal sent you pics of Quinn and Murphy while you were in the hospital! 🙂
First-Q is a cutie pie!
Second–you are so strong and I thank you for sharing your story–it is one of courage and optimism, and realism.
I am what my Dad refers to (lovingly….!) as a medical wreck. I have 2 genetic diseases–Cowden’s Syndrome which is a cancer syndrome and Charcot Marie Tooth disease which is a progressive neruo disease (muscular and sensory). Oh yes! I also have MS, Type I diabetes, PCOS, Roseca, Glaucoma, ocular roseasea, iritis and I have a cardiac PFO. I have had a radical hysterectomy and complete thyroidectomy due to cancer and am screened vigilently for the next cancers that I am likely to get (breast, kidney, brain). I work FT running a non-profit (more like 70 hours/week) and most days are good. I cant say I have a great day but I will say that the really horrible days are rare. OKAY to Good is wonderful. Bearable days of which there are many are tolerable. The rare really horrible days makes me research the states that allow compassionate ending of life.
There are a couple of reasons that I am writing all of this….First is that I think you get it. You do research, are willing to try various treatments, and are hopeful. You choose to be positive when you can be and you let us know when stuff has been bad for you. You live your life and adapt as you must. You get angry and sad and dont push those feelings away. You make a choice to choose not to be miserable about symptoms most days but you give yourself a break when you struggle.
2nd is the comments….I will admit that reading comments suggesting that if you followed a certain diet “the right way”, you will be fine. I want to shout FUCK YOU–who the hell are you to say that who the hell are you to suggest that you are not doing everything you can. So bravo to you for ignoring that shit. But today…yep today…is one of those really difficult days of significant pain and falls and tremors and ……today is one of those days that I cant just ignore those comments. So while you are able to take the high road today….I will not—-and say Fuck you for you.
Love to you and thank you for your ongoing living your life looking for and finding the good most days.
I’m glad the infusion is working for you! I was diagnosed with UC in 1970. Fortunately not as bad as yours. In ’77, way back then, during one of my flair ups my doc recommended exercise as a stress release, so I started running. Exercise has helped me thru UC, melanoma and treatment (three times) and an inoperable brain tumor, which today is giving me fits.
I just have to say that even though I can’t fully and completely understand what going through UC must be like, you have such an amazing little support system with Mal, Q and Murphy. I think each of them are able to lift your spirits in different ways when the tough days come! This looked like a happy day, especially with a special Whole Foods trip! I so wish we had one – their iced chais are so amazing!
Did you do the whole9 thing? Do you have a review? I’ve been considering, but would love to hear your thoughts on the experience.
Yep! Just click on the link! ðŸ˜‰
Oh my gosh, Quinn is such a precious little guy!!!
Is that red hair that I see?? SO cute!!
Quinn’s 5 month pic is ADORABLE. I feel like he just keeps getting cuter 🙂 I hope this newest drug regimen helps you!
That wrap sounds super tasty. And that last pic of Quinn and Murphy – so cute!
I love the Quinn and Murphy, 5 month photo, so cute!!
Thank you for sharing the journey! You’ve been through so much and are such an inspiration for a strong & healthy lifestyle!
Can’t believe how big Q is getting!!! Murphy is starting look smaller and smaller next to him 😉 And that is the coolest baby cover thing on your carseat, looks like he was toasty warm on your walk and shielded from any chilly wind!
I’m so sorry you’ve struggled so much with this! I have to say though-you have one adorable family!
I can’t believe he is 5 months!! Wowzers. And he is adorable <3
I’m glad to hear that you’re feeling a little better. It didn’t sound like you were doing well for awhile there. Hopefully the night sweats will stop soon. That sounded horrible!
Lovely photos 🙂 I also look forward to the holiday Celestial Seasonings teas every year! I’m sorry you’ve had such a rough time with your UC, but glad that the Remicade has been working (and I really hope you’re not having to pay out of pocket for it — those immunologic drugs are appallingly expensive!).
Quinn’s 5 month picture is like a mini Mal! What a ham.
I’ve struggled with migraines and chronic pain for about eight years, but I’ve spent the last five or so years dealing with IBS, and I’ve discovered that stomach symptoms *get* to you in a way that (even severe) pain often doesn’t. I mean, you can’t just quit eating, but sometimes it seems like every food aggravates you. Conversely, sometimes it just feels like you’re screwed up and the food can’t make it any worse. And then, sometimes, everything is fine and dandy with no explanation. I’ve tried low-FODMAPs, gluten free, dairy free, exercise, relaxation techniques, and a whole bunch of medicine and now… I guess I just kinda go with the flow. If I’m having a bad episode, I am, and there’s not tons I can do about it except not stress out.
Allllll that said, I’m SO glad you’re getting relief with Remicade. That’s amazing, and you’ve worked so hard to try to find it.
Glad you are feeling better! You are really inspiring to me especially as a fellow new min. ( my guy is almost 6 months). You rock!
** new mom*
I have struggled with IBS for 7 years. Clean eating helps me more than anything else, but sometimes nothing helps… IBS isn’t nearly as bad as IBD, but I know the frustrations!
Glad it is working for you!!
Aww, Quinn and Murphy are besties! 🙂
I’m so glad to hear that the Remicade is working! Hoping it continues!
I recently discovered that tea – delicious!! The new site design is stellar 🙂