My Constant Battle

[Warning: This blog post is not for literary critics, squeamish family members, or Puritans who swoon at swear words.]

When I started this blog, I promised myself and my readers two things: 1. I would be completely honest and 2. I would provide regular content. I’m sorry that I haven’t posted a new blog in a week, but I’m about to make up for it by being honest in ways that will make you blush.

My gastroenterologist called me an overachiever, yesterday. He asked me if there wasn’t any part of Crohn’s I wasn’t going to experience and I laughed, but the truth is, I wanted to cry. Especially because I was sitting down.

A week or two before the sacred Super Bowl holiday, I developed an abscess where the sun doesn’t shine. I spent days watching TV in bed because I couldn’t sit up and it was an all-consuming pain. My gastroenterologist sent me to the emergency room to have it evaluated by a string of complete strangers who cycled in and out of my curtained room to give me what seemed like a never-ending rectal exam. (At one point, I’m pretty sure the IT guy stuck his finger up my ass.) I was put on the dual super-Crohn’s antibiotics, Flagyl and Cipro, and told to soak my rear end in hot baths.

I was referred to a colorectal surgeon who seconded the Flagyl judgement, even though by this point, it was making my life a living hell. One night, I woke up choking on the contents of my stomach and spent days sick to my stomach with increased diarrhea, killer headaches, dizziness, and a fuzzy tongue. Yes, folks, a fuzzy-ass tongue. I knew I was on my way to a nice case of thrush; and to top it off, I started experiencing heart palpitations every 10 minutes. My heart was flip-flopping in my chest and my fuzzy tongue was cracked and bleeding. And my ass still hurt. (This is the part where I fall to the floor on my knees, raise my fists to Heaven, and scream, “Why, Lord, why?”)

I finally said, “Fuck the Flagyl,” and made an appointment with my general practitioner because my heart never stopped doing the samba in my chest. She gave me an EKG and told me that there was a small change that indicated that my heart wasn’t getting enough oxygen. So, she sent me home with the instruction to go to the ER if I felt any chest pain or shortness of breath.

I immediately started to feel pain every time I took a deep breath. One does not simply tell Christina to watch for a symptom and then expect her to not experience it. After a few panicky moments, I mentally slapped myself across the face and told myself to calm down. I had an echocardiogram on Monday and am still waiting for the results, although the flops have thankfully slowed down.

I tried to go on with life as usual and met some lovely friends for dinner Sunday night. We ordered a yummy green papaya salad, and when it arrived, the fruit was cut in long, hard shreds. When I brought the first forkful to my mouth, I thought, “Wow, I’ve come so far. If I ate this two years ago, I would end up with a small bowel obstruction. Thank God my last surgery fixed that problem!” I then proceeded to eat the shit out of that salad while giving myself multiple pats on the back until I woke up later that night, nauseous, my abdomen cramping in familiar and unwelcome sharp waves. The pain gradually decreased throughout Monday and I realized with  great, sweaty relief that I had managed to avoid a trip to the ER.

Later that day, I ate something soft to be on the safe side and the pains came back. And then they went away. And then they came back. And every time I ate, I felt nauseous;  and every time I went to the bathroom, the pain that wracked my body inched me closer to desperation. Thankfully, the pain has lessened, but I know, now, that I can no longer pretend that my bowel isn’t narrowed again–whether by inflammation, a new stricture, or outside adhesions from past surgeries–and that everything I’ve gained in the last two years is slowly falling away.

On Thursday, I put these pains in my back pocket and saw my colorectal surgeon for a check-up. I was prepared for the worst because things have only gotten marginally less painful in that area. She told me I had a fistula and that it’s clear that I now have perianal Crohn’s disease. In the last seven years, my disease has never ventured from my small bowel, and now it’s attacking areas that I hoped it never would. She told me that I will need to have outpatient surgery, where she will remove the infected area and place what’s called a seton through the fistula to allow it to heal. She encouraged me to go back to giving myself a Humira shot once-a-week, no matter how much it costs.

I saw my gastroenterolgist the next day and he agreed wholeheartedly. Not only did he recommend going back on weekly Humira, but he prescribed Imuran as well. He said that it’s obvious that my disease is “very much” active, and that we have to do what we can to get it under control, but there’s no guarantee that these medications will help.

When I first started seeing this doctor less than a year ago, I had very high hopes that took a nose dive over Christmas. I brought up the fact that I first started having rectal pain during this time period, and that he told me that my symptoms were attributable to my IBS and not my IBD. He then said he was sorry for making a determination based upon my blood work results and for not bringing me into his office immediately.

We then discovered together that some of the details I gave the nurse before Christmas–that I was bleeding and my joints were red and inflamed–were somehow lost in translation. He looked at me with genuine surprise and said, “I wasn’t told that. I am so sorry.” At that moment, my faith in him was restored. It takes a lot for a doctor to apologize, and he didn’t even hesitate to say that he agreed that my flares were not measurable by traditional blood work, and that he admired the way I was coping. He said that he will do what it takes to get me through this rough patch and to “the other side”. When I voiced doubt that I would ever reach remission, he told me to never doubt that there will be an “other side”.

I am going to hold onto this hope and keep my fingers crossed that the Imuran will help the Humira kick me into a glorious period of pain-free health. I have to believe that one day, I will reach the other side. I just pray that the path isn’t too rocky, and that I don’t have to cross through too many surgeries to get there.

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18 thoughts on “My Constant Battle

  1. when Danny when through some medical issues like when he had leukemia that really scared me I would write down whatever scared me like asparagenese and because my faith is in Jesus I would write his name over asparagenese and that was my way of letting him handle the problem…. so I’m going to encourage you about the possibilities of remission… Danny was diagnosed with ALL in 2001 this past June he’s been in remission for 12 years! whoo.. whoo… Later he was diagnosed with Juvenile Dermatomitositis they almost had to put a peg in him. He’s in remission from that he takes plaquenil as a maintenance drug…. his high blood pressure issues we resolved with diet and exercise…. and he’s doing really well with his Crohn’s disease….I’m going to believe for remission for you awesome, dull, boring going to enjoy your life remission and if you don’t mind please believe for me that I will not only do really well in school but I will major in something I enjoy doing…. I somewhat understand your fears today Danny and the pcs worker went to the store and pears were on the list the store was out of pears. I was like oh no he’s going to get constipated and surely this will result in things going back to the way they were but then I had an idea and suggested she get prune juice instead I was still a little worried because of the difference between pears and prune juice. But when they got back home I decided to just add prune juice to his beverage and he just had a decent b.m about four hours later so I was happy. More encouragment Danny is 22 since he was 10 he has stopped walking three times not only does he walk now but he walks pretty good. Somewhat understands just means that fear has danced it’s ugly dance at my door too. Something else beside prayer is everytime but this last time that Danny got really sick I would request a prayer cloth for him and pin it on him….

      • your welcome… do you eat yogurt and take acidophyllus(?) ? Danny gets yogurt about three times a week with his breakfast. does eating yogurt even help when you’re on such strong antibiotics? I bet something that would really calm your intestines if you can have bananas is to threw some bananas in a blender, some yogurt and any kind of milk you can tolerate and start drinking that often. And if you tolerate Tumeric add some of that if it can be added in a blender. Do you ever have constipation issues Danny has a history of constipation issues a few months ago he was even impacted so in addition to his meds I have to make sure he gets foods that help him to stay regular. I don’t read to much of that on this site it’s like no one has constipation issues.

  2. Just wanted to tell you how sorry I am that you’re going through this. I have perianal disease, too. My Crohn’s is now all through my lower bowel and rectum and I’m at the point where my GI believes a clinical trial may be my best bet. This disease is awful, but it helps to know we aren’t alone. I hope you find relief soon!

  3. Dude, that sucks. All of it. I’m so sorry it’s happening to you (and all at once, apparently). I have no great words of wisdom to share, just know my tongue is fuzzy too (stupid thrush), my heart is racing (stupid prednisone), and I understand about close-call bowel obstructions (stupid Crohn’s). I hope your doctors can find a way to bring you some relief soon. Thanks for writing about all of this so honestly, too.

    • Thanks, Emma! It’s so nice to have a fuzzy-tongued sister. :) And thanks for the support. I hope you’re able to get everything under control soon, too. This disease is truly a monster.

  4. My heart is aching for you and my eyes filled with tears for your pain. I cannot clearly express how sorry I am that you are having such a terrible time. What I can tell from your writing is that you are one hell of a tough cookie! I know it’s exhausting and there are times, like now, in which giving up would be easier. But hang in there my IBD sister and I promise you there is an “other side” and you will get there! **hugs**

  5. I’m not a family member or a Puritan and I can’t find my lit crit hat this morning, so I was able to read this, CM. That sucks that your Crohns has moved to a new area, and that your doctor’s office screwed up like that (not surprised there, though). Many hugs to you. xoxoxo
    Luanne

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  7. I just ran across your blog and am so thankful! I have moderate CD. I had a flare up and was hospitalized and sent home with an Rx for Flagyl. That medicine was HELL. It made me so sick, I vowed I will never take it again. I am currently on Humira and it seems to be working. I am glad to have a place to turn to and people to talk to who understand!

    • I’m glad you found the blog! Thank you for reading and commenting! I’m glad I’m not the only one who thinks Flagyl is the devil. I’m happy to hear the Humira’s working! ~ Christina

  8. Hello Christina! It has truly been a pleasure finding your blog. I found it as I was browsing through my phone this past week, as I was laying in bed for abdominal pain and excessive blood in my stool. I realize this isn’t a very pretty picture, but you are honest in your blog, and this is a reality that is occurring to us.

    Reading this particular post hit home. I felt like you were writing about my current situation. I have had Crohn’s for 13 years now. I am going to turn 23 in a couple of days. I have had perianal fistulae for the past two years. I have several at this point, so I have setons out of the wazoo to avoid formation of abscesses. That is when I began the biweekly Humira treatment, in hopes of the fistulae healing on their own. Since then I have had another ileo resection (which leaves me with four feet of small intestine), other surgeries for the fistulae, and the Humira has increased to twice a week. I was just released today, since I was there since Wednesday running all sorts of tests. My favorite part of the visit: “There was nothing you could have done to avoid this flare up. You are doing all we are telling you to do.” Well thank you doctor, I’m glad I still have no control. This really is an everyday struggle, and I wish you all the best. I hope the Humira does work a lot better with your body, and that your fistulae do heal.

    The last quote, especially, defined how it feels for me at the moment. Sometimes I feel immensely stuck because there are many things that have to be put on hold while “my health gets better.” Once again, good luck fellow Chronie.

    • Oh, Elizabeth, I’m so sorry! I have one fistula and it’s bringing me to my knees. This perianal disease is very painful. I can’t even tolerate the exams.

      I’m glad you found my blog and I hope it gives you some comfort knowing you’re not alone. My GI told me that it could be that nothing will work and that I’ll be unresponsive to meds. I helped up my hand and said, “Umm, let’s not go there, yet.” Are you taking anything with the Humira like methotrexate or Imuran? He added Imuran to my dose.

      You have been through way too much for a 23 year-old. This disease is so not fair! If you ever feel like writing down your story, I’d love to put it up as a guest post. Let me know. My email is CrohnsDiaries@yahoo.com. It’s fine if this is something you don’t want to do. It seems like having dealt with this from such a very young age that you would have a lot to teach us.

      Also, I have a Facebook page if you’re interested in joining the daily fun. It’s https://www.facebook.com/TheCrohnsDiaries. It’s a good page to vent!

      Keeping my fingers crossed that Humira does its job!!!

      Christina

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