I had a relapse with my Crohn’s about 3 months ago now, and my best friend, noticing that it had hit me really hard, encouraged me to start writing this blog. It was amazing how this recent relapse threw me! I had been in remission for 3 years (that is, 3 years ago I had a small external abscess near my anus that needed clearing – I say this is ‘minor’ surgery because they didn’t need to enter within!) and before then, the end of 2009 to the middle of 2010, was probably my worst year dealing with pain, where after a bowel movement I couldn’t move for about 3 hours from the pain, and if I had to go to work, I swallowed as many painkillers as I could safely consume and just walked really slowly, or sat on a pillow. So all up, I was kinda in “remission” for 4 years…
So when things got bad in February this year, I was shocked! I thought I had overcome the Crohn’s! I thought I had tricked it into staying in remission forever…wishful bloody thinking! I didn’t have the typical symptoms that tell me that things are going badly – stomach cramping, puss, diarrhea, bloody stools, fever… But the symptoms I did have included the following:
Frequent bloating. This type of bloating is the kind that makes you look 5 months pregnant, where it’s painful to sit or stand because you feel like your insides are going to explode from within, or it feels like you are wearing a corset around your midsection that is cutting off circulation to your organs…it’s a tight, horrible band of discomfort around your stomach that even makes your back hurt…and you just can’t get rid of it for the whole day!
But I had explanations for those… that time of the month, or I ate something funny, or I’m constipated… I kept finding justifications, instead of realising this was a NEW way that my body was telling me that I wasn’t well.
Regular constipation. Not doing a poo for a day is not really considered constipation. Not pooing for a day and then feeling the urge and NOTHING comes out even though you are pushing or taking heaps of laxatives, and you find yourself praying to the Gods while on the porcelain throne, THAT is constipation. Squatting helps, so that you don’t burst anything by pushing too much… just saying… But I too had an explanation for this – I didn’t drink enough water today, I ate too much pasta, I haven’t done enough exercise, I’ve been sitting too much at work, my stricture is flaring… once again, didn’t realise that this was a whole new way of showing me my Crohn’s was active.
Tired. I felt so goddamn tired! I could barely make it through a day at work! I had naps during my lunch break or free period (I’m a teacher) and developed a love of coffee (with soy milk of course). But my explanation for that was that I was stressed (I was planning a wedding after all), or had a cold, or had a big weekend and I’m older now so it takes me longer to recover… I even went and did a blood test because I realised something was wrong, maybe I was anaemic? Maybe I needed more iron or vitamin D (everyone with Crohn’s has a Vitamin D deficiency as that’s part of the autoimmune problem), and the results showed that there was inflammation in my body (high white blood cell count) but I had the flu or a sore throat, so that made sense…right? hmmmm…. wake up girl!
I didn’t realise that over a 6 month period, my body was SCREAMING at me that things weren’t right. I was in denial land again… I hate that place, but keep going back to it. I was looking for all the OTHER symptoms that I usually experience to tell me my Crohn’s was flaring, and not realising that these were NEW symptoms that I now need to watch out for. I now know that if ANYTHING doesn’t feel right in my body, then it’s probably the Crohn’s and I have to get back to diligent managing!
So when I woke up one Friday morning in a lot of pain down there, I’d noticed that I had (I’m not shitting you now…) grown what appeared to be a testicle overnight. My left labia was REALLY swollen. I was like, that’s weird… did I sleep in a funny position? Did I get too freaky with my husband? Was I bitten by something? Hmmm… why don’t I just see what happens with it tomorrow (denial to deal with it now situation). I spent the day at work, and any opportunity I had to sit down, I would have my legs elevated (because that helps reduce swelling in weird areas, right?). On Saturday morning (I was acting quickly this time! The very next day!) I made an appointment with my GP at lunch time because the swelling became super painful, that even wearing underwear was too much! I casually sat on the couch with an ice pack between my legs until it was time to go to the doctor. As soon as she examined me, she told me I need to go into hospital because I had a Bartholin’s cyst that needed to be incised immediately. Bartholin’s cysts are apparently a very common affliction in women – 1 in 50 get one. It’s a gland near the vaginal opening that can get blocked, and when it does, pain and swelling ensue. I comically texted my girlfriends on the way to emergency with my husband, to tell them that they were now safe, because I had gotten the Bartholin’s cyst for the group.
Anyway, spent the night in hospital, they opened the cyst and left in some dissolvable stitches to help with drainage, and Sunday I was home. No biggie. Got a medical certificate for the week because I would need that time to recover and avoid being on my feet (my whole job!) in case gravity took it’s toll and made things more swollen. Sweet! Week off work!
Pffttt…that excitement lasted a whole 3 days… on Wednesday the swelling became worse. It doubled in size and turned beetroot red. I could barely sit down. I’d have to lie down with pillows underneath my legs to get comfortable. I couldn’t walk. On Thursday I went back to my GP who actually looked scared when she had a look down there… never a settling experience when your own doctor looks freaked out by the situation! She called my gynaecologist for me and made me an appointment with him the next day. It totally annoys me that when you call your specialist, it takes at least 3 months for you to get in, but if another doctor calls on your behalf, suddenly there is an opening??! Go figure… so on a side note, if something is flaring, go to your GP and get them to call a specialist for you!
When I saw my gynaecologist the next day, he confirmed that there was some whack infection happening post-surgery. He prescribed me Flagyl and Kefflex (super strong antibiotics) and gave me his personal mobile number. He said if I got a fever, then to go to emergency, otherwise, I would see him on Monday for surgery to incise it…again.
Over the weekend, I had a massive fever. Unfortunately, it was Mardi Gras weekend (party time) and I knew that if I went to emergency at St. Vincent’s (right next to Kings Cross!) I wouldn’t be seen until Monday anyway! So I got a script of Endone, texted my gyne about the situation, and lay on the couch the whole weekend.
On Monday I check into surgery. My gynaecologist wanted to get a gastro surgeon to have a look at me too, considering my history of Crohn’s disease. I was like, “oh, it’s not the Crohn’s. My vagina is the problem now…it’s not the Crohn’s”. I did an MRI (loud, bloody machine to lie inside for 30 minutes) and turns out WAHOO! It is the Crohn’s (total sarcasm)! Turns out I had a a couple of abscesses – one in the labia and one in the perineum, and I had fistulae forming, which are little tracks or tunnels through your tissue that lead to infection and abscesses. Turns out, a long fistula was running from my colon into my labia. Fucking great. So now my Crohn’s had spread into my woman’s zone. Absolute DISASTER!
And that’s how my recent relapse totally screwed me over. I felt like my body had betrayed me. It didn’t give me my typical symptoms that raise the red flag for me to look after myself more carefully. I physically recovered from the incident (after 3 surgeries and insertion of setons), but emotionally I didn’t. I felt shame and embarrassment. I felt scared that I didn’t see it coming and that it had spread. I didn’t feel sexy anymore. I cried everyday. I screamed into pillows and wallowed deep in self-pity. And it was during this time that I depended on EVERYONE around me to help me feel strong again. The most important thing to have in your life if you’re dealing with illness is to have a support network of family and friends. Because no matter how positive you are, I can attest that you can lose that in an instant, and it can take you a while to get back on your feet (figuratively and literally). If it wasn’t for people reminding me that I’ll get through it, and that I can get better again, and lots of acupuncture (upped my sessions to 3 times a week), I would’ve stayed in my misery hole for much much longer. And this is also how this blog was born. It has been really therapeutic.
So this is what I suggest, that worked for me, on how to deal with a relapse:
1.Get angry. Super, hyperventilating type of anger. Scream, curse, pound your fists into your pillow. Pace the room aggressively.
But don’t let the anger last too long, because it’s exhausting and makes things worse for your healing in the long run.
2. Cry your eyes out. Lose yourself to the sadness and shame. Get it all out. All the emotion. Let your soul release it to the universe. And don’t give yourself an unrealistic time frame to get over it! Don’t say, ok, I am only going to feel bad for 2 more days. No. You need more time. It might be a week, or even a month – be realistic for yourself.
3. Have family and friends around you to support you. The hardest thing I’ve ever had to do was let people know I was unwell and that I needed help. I hid being sick for years so well from people, that even yesterday a good mate of mine of 10 years said he had no idea I even had Crohn’s! Call your friends and family and TELL them that you need them, because you’re having a hard time. Find the strength to do this, because it really helps when you are totally down and need to see that light at the end of the tunnel again.
And look at me now! I’m writing a blog sharing EVERYTHING! Now I’m just shouting to the world that I have Crohn’s! It sucks to have it, but hey, that’s just how it is.
4. Find your determination again. Hard to do at times, but it’s in there. After the emotional release, I was determined to do what ever was possible to get me back on track- I took time off work, slept as much as I needed, met with my naturopath, my holistic medicine doctor, got more acupuncture and energetic healing sessions, met with multiple gastroenterologists to find out different treatment options and tried those options, researched about drinking camel’s milk (yes, this is a thing: http://www.camelmilkmagic.com/), I tried aromatherapy, did food allergy tests, had salt baths twice a day, started a blog, started taking vitamins and supplements, and got massages to help me relax (essential therapy I swear!). Do whatever version of these things that you can do to get you in a positive direction towards healing.
5. Change your diet. Just do it. Cut out gluten, dairy and sugar. These elements are inflammatory. It’s hard to do because everything that tastes amazing has either gluten, dairy or sugar, or all three in them! But it is totally possible and I will write a blog about other beautiful options to eat. Avoid raw foods too (too harsh to digest) and don’t drink coffee.
6. Create a new mental checklist of ADDITIONAL symptoms that you now have to look out for. It sucks, but will keep you prepared for next time!
7. Be kind to yourself. Forgive yourself for not paying attention to the symptoms. Forgive yourself for not dealing with it sooner. It’s ok to be vulnerable. Say lovely things to yourself (and believe them of course) such as “I’m ok”, “I’m going to get through this”. Allow yourself the time to feel better, and pamper yourself to feel special. Don’t feel like a failure. And be alright with staying at home if you need to take it easy – be ok with saying “no” to people. Don’t push yourself too hard.
And guess what… before you know it, you’re recovering and moving towards remission again. It’s taken me 3 months to properly feel like I am physically, emotionally and psychologically better. I am dealing, and I am healing. And you can too. Remember that you’ve been healthier before, and you can get back to that place, it just requires some love and support for yourself and from others, and some determination to do everything humanly possible to get super well. Good luck xx
P.S My husband just likened this post to me writing the next Game of Thrones book. Sorry they’re so long! hahaha