Hello friends! You may have noticed I’ve taken quite a long break from the blog and from my social media accounts. So before getting into my suggestions for fighting a Crohn’s flare, let me start by sharing an update on my health and what’s been going on with me during the last few months.
In a nutshell: after maintaining remission from Crohn’s disease for over four years, my condition started to flare up again several months ago, and I’ve been fighting a Crohn’s flare ever since.
A lot has happened during this time, too much to describe in great detail. But I feel it’s important to share the gist of the situation, whether to help answer questions from loved ones, assist other patients suffering from similar types of illness, or simply quench the curiosity of some inquisitive minds.
If you have Crohn’s disease, especially a severe case of it (like I do), you know that when it escalates, it can completely halt your life. And that’s exactly what’s happened to me. Over the last couple months, I was hospitalized twice (for about a month total), was on home nursing care in between, and finally had a total colectomy and ileostomy a little over a month ago. Yes, I’ve now joined “The Ostomy Club,” and I’ve started a new chapter in my Crohn’s journey: wearing an ostomy pouch (more on this below).
So What Brought on the Crohn’s Flare?
One of the first questions people ask me when I tell them I’m back in a flare is, “What do you think brought it on?”
There are many times where this is a nearly impossible question to answer. Crohn’s disease is unpredictable, and flares can happen at any time and for various reasons. And there are many times where we’re unable to pinpoint any reason at all.
That being said, I actually think I know what brought on this particular flare, or at least, I think I can identify the biggest culprit.
As most of you know, I’ve used a Paleo/AIP hybrid diet to maintain remission from my Crohn’s Colitis for more than four years. As I’ve mentioned before, I’m resistant to most conventional Crohn’s meds (i.e. they don’t work for me) or I’m unable to take them due to life-threatening side effects. Therefore, I had no choice but to rely on an anti-inflammatory diet to help control my inflammation and keep me in remission.
And my Paleo diet worked! At least, for as long as I was able to stick with it. Unfortunately, towards the end of 2016, I developed a histamine intolerance which forced me to change my diet. I had to cut out many of my healing, Paleo-friendly foods and ended up replacing some of them with non-Paleo foods. This sent me into a downward spiral which, I believe, led to what is now my current Crohn’s flare. The inflammation took several months to progress, but once it did, it was in full swing, and I was forced to deal with one of the worst flares of my life.
I dealt with the usual painful and debilitating Crohn’s symptoms, but the worst of it began when I stopped eating. I completely lost my appetite and developed extreme nausea, I’m guessing as a result of the intense, chronic pain I was facing on a daily basis. I was hospitalized and eventually placed on TPN, but by then, I’d already lost about 20 pounds and lots of muscle mass. I was extremely weak and malnourished. As wonderful and healing as Paleo and other anti-inflammatory diets are, they’re only useful if you have the ability to eat in the first place.
Because of my history of poor reactions to conventional medications, I didn’t have a lot of options. My doctors wanted me to try a new biologic, and despite my horrific reactions to biologics in the past, I was willing to try because I was desperate. But an old perianal fistula decided to rear its ugly head (I had developed it during my last flare several years ago, and I thought it had healed on its own during my remission). This fistula grew worse over time, and ultimately became the reason we decided on surgery instead of the biologic medication. I had already started taking prednisone, but since I’m pretty resistant to it, it (not surprisingly) wasn’t really helping. I was deteriorating quickly, and we needed something that could immediately address the problem. The biologic medication could take up to 12 weeks to take effect, and that’s if it would take effect at all.
But I didn’t have 12 weeks to spare. So my doctors and I ultimately decided on surgery as a last resort.
Therefore, about a month ago, my surgeon removed my entire colon (or what was left of it after two prior partial colectomies) and performed an ileostomy. An ileostomy is a procedure where the surgeon uses the small intestine to make an opening (or stoma) in the abdominal wall; instead of passing waste through the colon, the patient will now pass digested food through the stoma, where it will collect into an external pouch, known as an ostomy bag. So I am now learning to live with a stoma and an ostomy bag…and boy, is it a learning curve!
The stoma could be temporary or could be permanent. It will all depends on how my healing progresses and in many cases, simply comes down to personal preference. Even with the option to reverse an ostomy, some patients choose to keep their stoma permanently because they prefer the quality of life that comes with it. It’s a decision I will have to make somewhere down the road. For now, I’m just focused on my current goal of healing from this surgery and this flare.
What Happens Next?
Fortunately, the ileostomy is serving its purpose and allowing my fistula a chance to heal. I’m also finally able to eat again, which will give me the ability to gain back some weight and strength. My progress has been slow, but I believe that’s because my health was in such poor condition prior to surgery. Meanwhile, my digestive tract is now learning how to function in its new state. It’s going to take time, but at least things are going in the right direction (yay!).
So now I’m recovering from my surgery, all while continuing to treat what’s left of this flare. I’m still in pain, but now it seems to be due to the surgical changes more than the flare inflammation itself. Meanwhile, my diet is limited right now as I navigate through these changes. But eventually, once my digestive tract has adjusted, I look forward to getting back to a full Paleo or AIP diet again (hopefully with less histamine reactions this time). It will be more important than ever to keep the inflammation under control and get my body back into optimal health.
This recovery has been slow so far, and I still have a long way to go. But I’m making progress, and I’m grateful for that. I’m also incredibly thankful for all the family and friends who have been at my side, whether physically or in spirit (more on that below).
I also want to apologize to any readers who reached out to me during these last few months who may not have received a reply from me. It’s been difficult to keep up with the blog, but I hope to be back in the swing of things soon, and I appreciate everyone’s patience and understanding.
All this being said, I have to be honest: this latest flare was really difficult for me. I had to dig deep to get through it. And in addition to my natural living routines, I also had to rely on conventional medicine to help me battle this. So I wanted to share some of the important lessons, reminders, and tools that have helped me get through this flare (and others I’ve faced in the past). Although these suggestions specifically refer to Crohn’s, they could also apply to other autoimmune conditions, chronic illnesses, or other life challenges (even non-health related). So here are some of the things I like to keep in mind while fighting a Crohn’s flare:
Some Things to Remember While Fighting a Crohn’s Flare
1. An Anti-Inflammatory Diet Works
Following a Paleo/AIP-inspired diet kept me in remission for over four years. Once I was forced to veer from that diet, I was afflicted with the repercussions: my health started to decline, and I eventually developed a full blown Crohn’s flare. This was further evidence that anti-inflammatory diets do, in fact, work for many of us, and nutrition plays a critical role in reducing inflammation and fighting autoimmune disease. Whether it’s Paleo, the Autoimmune Protocol (AIP), the GAPS Diet, or the Specific Carbohydrate Diet (SCD), lifestyle diets that focus on healing the gut and reducing inflammation are effective for many of us with inflammatory conditions. If you are new to this concept, don’t be afraid to question conventional nutrition advice, research thoroughly, and explore the nutrition regimen that can work for you.
In addition to all the anecdotal stories of success, it’s exciting to see some promising research in diet treating inflammatory bowel disease (IBD), like this study on the Autoimmune Protocol treating IBD, this study on SCD treating IBD, and this study on a Paleo/SCD-inspired diet treating IBD. While these studies are small, they are encouraging, and hopefully, they signify the start of larger studies like this to come. The results are not surprising to those of us who’ve already found some success with anti-inflammatory diets.
These results also should come as no surprise when you consider the increasing research showing the connection between gut bacteria and diseases like Crohn’s and Parkinson’s, for example.
Even if you are taking medication, there’s no reason not to also attack this disease (or any disease, for that matter) from a dietary angle as well!
2. Even Though Diet is Critical, Sometimes Medication is Needed
As much as I preach about diet and nutrition, sometimes it’s simply not enough to combat severe disease. Sometimes medication is necessary. The problem is, there is often a stigma in the natural or “alternative medicine” world that all pharmaceuticals are bad and shouldn’t be utilized. But the truth is, some of us need medication or have better results when adding it to our treatment plans. And there is (or should be) no shame in this!
If medication helps you and you don’t develop terrible side effects from them, then by all means, do what you have to do. Although there are no longterm meds that seem to help me (I’ve had poor reactions to biologics, immunosuppressants, and anti-inflammatory drugs), I’ve still had to turn to other various meds – such as antibiotics, steroids, anti-nausea meds, and even pain meds at times — to get me through flare-ups. Like I said, when we’re in extreme circumstances, we do what need to do.
And as I mentioned in number 1, even if you have to take medication, nutrition can still be of huge benefit. An anti-inflammatory diet can be used in conjunction with medication for a more comprehensive approach and even better results.
3. Sometimes, No Matter What We Try, Things Are Simply Out of Our Control
This one is hard to accept. It’s a harsh reality I had to face during this recent flare. Sometimes we feel like we’ve tried everything, and we still don’t find the success we want. I had tried what felt like everything over the years, from medication to diet to surgery to all sorts of lifestyle changes. I work day in and day out to combat this disease and all the complications that have come along with it. And I’ve had some great success with these efforts. But with every autoimmune disease, there are ups and downs. During this most recent flare, I spiraled downwards, and I came to a place where I had just about run out of options.
There were times when I felt like a failure. Or like I was weak. Or like there was no hope. But the truth is, sometimes we just have to surrender to the fact that not everything is in our control. And that’s okay. It doesn’t mean we did anything wrong or we didn’t try hard enough. It’s simply a part of coping with autoimmune disease. Accepting and acknowledging this reality is empowering. It allows us to forgive ourselves for “failing” (even though we haven’t actually failed at all). Once I acknowledged this, I was able to stop beating myself up and move forward to make the best decisions I could with the options I had left.
I opted for surgery because it was the best option given my circumstances, and now I enter a new chapter of my life. It may not have been my first choice, but I’m grateful for the opportunity to keep fighting and make the best of my new circumstances.
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4. Other Lifestyle Choices Can Help
While diet is critical (at least for many of us), and while many still have to rely on medication, there are many other factors that can affect our disease. Obviously, genetics play a role, and stress has been strongly linked to active Crohn’s disease. But there are other efforts that have helped me along the way. I believe in taking a comprehensive approach to treating Crohn’s and my other autoimmune complications.
In addition to diet, some of the natural and alternative treatments that have helped me are:
- mindfulness, meditation, and prayer
- stress management: getting proper sleep, reducing stress as much as possible, using natural relaxation tools like deep breathing techniques and essential oils
- reducing toxin exposure: using cleaner beauty, personal care, household cleaning, and laundry products, for example.
- acknowledgment of trauma or childhood adversity: if you think your childhood experiences could have any connection to your disease, I highly recommend reading Childhood Disrupted: How Your Biography Becomes Your Biology, and How You Can Heal by Donna Jackson Nakazawa. It’s packed with science-backed information and is a game-changer (as far as I’m concerned) in the world of connecting childhood experiences to chronic illness.
- alternative doctors and treatments: in addition to acupuncture, I had just started working with a functional medicine doctor when all this started. Although this was more for other symptoms (not specifically for Crohn’s), my symptoms are all connected and all fall under the autoimmune umbrella. I was just starting to see improvement in treating certain symptoms, like my migraines and brain fog, but I had to put these appointments on hold when my Crohn’s flare escalated. I look forward to continuing treatment eventually, especially since I’ll have to deal with the repercussions of being back on prednisone (I’m currently weaning off prednisone now).
5. Everyone is Different and There is No One-Size-Fits-All Approach to Treating Crohn’s
We can take in all the advice and research in the world, but only you can determine what works for your body and what doesn’t. I’m sure you’ve been in the position where someone is offering you yet another “suggestion” for what you could be doing differently. It’s usually meant with the best of intentions, but it can get frustrating to hear random suggestions when you probably feel like you’ve already tried it all. You’re the one facing the disease everyday…no one else has walked in your shoes, and you know what’s best for your body.
There are many variations and degrees of Crohn’s, so I’ve learned it’s futile to compare myself to anyone else. I’ve been told by various doctors that I have an extreme case (my current GI doc has said I have the most “gnarly” case of Crohn’s disease he’s ever seen). I’m all for being open to new ideas and treatments, but I also know my body hasn’t responded as favorably to conventional treatment. So I have to find my own path. I try to gather the most promising information I can and simply test it out. Some things work for me, some don’t. As “Crohnies,” we do our best with our individual circumstances.
6. Practicing Gratitude Goes a Long Way
This one can be tough when you’re immersed in suffering. I know I have trouble with it when I’m fighting a Crohn’s flare and I’m in a lot of pain. It’s difficult to focus on the good stuff surrounding me when my life has come to a screeching halt and is revolving around my disease. But even while suffering, there is usually something to be grateful for. And practicing gratitude, for even the small things in life, has been shown to be beneficial physically, psychologically, and socially.
One of the things I tried to focus on during this time was the amount of support I received from the people around me. When you become disabled, you may have to completely rely on people around you. I’ve had so many friends and family members who came to my side or sent their support during these last few months, and I don’t know how I would have made it through without this support system in place. To each and every one of you: thank you!
I also try to be grateful for the things many of us often take for granted: a comfortable home, access to healing foods and medicine, and of course, health insurance to cover the medical expenses during this journey. I try to acknowledge and thank every good nurse, doctor, and healthcare professional who crosses my path, especially those who show they really care and go the extra mile to help. I’ve learned not to take any of this for granted.
I have found that gratitude has always helped me get through trying times, and these last few months have been no exception: it’s been an integral tool to help me battle — and conquer — this most recent Crohn’s flare. It not only is a mood-lifter, but research shows gratitude can actually can improve health in various ways.
7. Utilize the Power of Positive Thinking
This is sort of an extension of number 6, but it’s worth mentioning. Trying to maintain a positive attitude while fighting a Crohn’s flare is difficult. Sometimes it feels downright impossible. My mind goes to dark places when I’m suffering, especially in the moments when it feels like it’s not going to get any better (and I’ve had many of those moments!). But wallowing in self-pity will surely not help the situation.
Positive thinking and positive self-talk, on the other hand, has been shown to have many health benefits. It may not be easy, but focusing on the positive helps me gather the strength I need to get through challenging situations.
8. Allow Yourself to Feel the Loss and Grief That Come Along with Chronic Illness
Feelings of loss and grieving don’t just happen when losing someone we love. There is another kind of sadness, loss, and grief, the type that comes along with chronic illness. It’s okay to express and acknowledge these feelings (and probably healthy to do so). Allow yourself to feel the grief: it is quite real.
I’ve lost months of my life (which actually add up to several years at this point). I’ve missed out on important life events. I’ve had to shift career and life goals. My relationships have changed. I don’t get to travel or participate in activities the way I used to. There are many foods I can no longer eat or enjoy. Oh, and on top of it all, now they’ve taken away my colon! I feel like I’ve lost a lot because of this disease. But you know what? It hasn’t destroyed me yet. And I know there are so many people out there who’ve been through so much worse than I have.
These trying times remind us that we are resilient, and they allow us to find strength within that we might not have ever known we had. I try to remember that this is yet another phase of life, and I try to look forward to whatever the next phase will bring. Because I do believe things will get better.
And when we finally do get through the dark times and are able to come out the other side? It feels pretty damn good.
What are the things you rely on to get through any kind of flare, illness, or life challenge? Please comment and share!
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