Skip to Accessibility Tools Skip to Content Skip to Footer
Every Painful Step Is a Reminder I have Crohn’s Disease

Every Painful Step Is a Reminder I have Crohn’s Disease

Every painful step I take is a reminder that I still have Crohn’s disease, and Psoriasis, and arthritis due to both diseases. Each day is a form of Crohn’s disease awareness. For myself, not others. Everything I feel cannot be seen. My Crohn’s and arthritis are invisible diseases. My Psoriasis is also for the most part invisible. It likes to hide in places not easily seen that are very uncomfortable to live with.

Chronic pain

Do you remember the first time you experienced a severe pain that you would soon learn would become chronic pain? I do.

While the calendar date may not be engrained in my memory, the events that took place are firmly planted there. I’m not alone in that. When I was at a conference for health advocates one of the speakers came out to mingle. She was the epitome of the cool girl on TV during my teen years. The very same years I was first starting to realize something was wrong with my digestive system. Anyway, she is now an advocate and speaker for chronic pain. I was momentarily starstruck when she said hello. Once it subsided, we chatted and I asked her the same question I’ve asked so many others with chronic illness.

“Do you remember the moment when your pain first started?”

I doubt I’m the first person to ask her this question. I couldn’t be. She certainly wasn’t the first person I’ve asked this question to, but her answer was so damn glamorous, “I was out with George Clooney.”

If we meet and I ask you this question, please don’t let her response deter you from answering. Your answer may not involve Clooney, or maybe it will? Either way, I still want to hear what you have to say.

But I digress…

I live with chronic pain due to Crohn’s disease and Psoriasis that went untreated for far too long. As a teen, I was diagnosed as only having a severe form of IBS-D and gastritis. This was a misdiagnosis. My pediatrician also told us I had cradle cap. As it turns out, that was scalp Psoriasis. My mother asked if it could be Crohn’s. She was told it couldn’t possibly be Crohn’s disease, because my intestinal pain and tenderness wasn’t located on the proper side.

Is there really a proper side, guys? We didn’t know that back in the 90s, but it still haunts me.

It’s infuriating now to know that the spells of tendinitis occurring when my intestines and scalp inflammation were really bad were most likely all related. And all were ignored.

Poll

A waking nightmare

The day I woke up and had to crawl to the bathroom was the start of a waking nightmare. One that most likely will never end. This wasn’t a severe pain in the gut sending me to the ground, it was my feet. I don’t remember the exact day on the calendar. But I remember it being very early in the morning. The night owl news show was airing on the local ABC station. I remember getting back into bed and willing sleep to come again. And I remember wishing with all my might that the next time I attempted to walk, I would be able to do so pain-free.

That never happened.

A few mornings later, I experienced swelling and fire-like pain and itching in all 10 fingers and toes, as well as my ankles.

Shattered were my dreams of coming out of this flare and finding a new job. My old job had faded away because my former boss labeled me a liability to the team. I had no legal protections, as I live in a right to hire state and was a contractor.

On a handful of painful nights, I searched for my former clinicians. I wanted to see if they still practiced or taught medicine. They were fairly easy to locate. During those search sessions, I’ve wondered if they remember my case and how they dismissed and belittled my symptoms. Or how they ignored my mother’s pleas for help. I drafted an email once to my former pediatrician. It was shortly after regaining feeling in my left hand. Neuropathy and swelling had compromised my hands for about two and a half years prior to writing that draft.

My disability paperwork shows disability due to Crohn’s disease, and complications like arthritis. I wish it said disability from extra-intestinal manifestations of untreated Crohn’s left untreated due to inadequate medical care by practitioners X, Y, and Z.

Now that I got my little revenge fantasy off my chest, here’s some positive news. In the event you did not see my other pieces — Y’all, I’m getting married! A few days after the wedding, the hubster and I are marching (err I’ll carefully walk / he may march) up the steps of Capitol Hill to participate in Crohn’s and Colitis Awareness Week 2019.

While my chronic pain may never completely subside, it’s gradually improving. Gratefully, I’m two years into a treatment that my body continues to receive positively. Even though I was an early responder on this treatment, it by no means is rainbows and butterflies all the time. If there is one truth I can impart to patients starting a new treatment — give it time to work.

I’d also like to point out that in this entire piece, I only mentioned the bathroom once. I frequent the restroom often (even during times of remission), due to Crohn’s symptoms. But it isn’t the only debilitating component of inflammatory bowel disease for me. During Crohn’s and Colitis Awareness week, I try to especially emphasize IBD is not a bathroom disease. It is a whole body disease.

How do you intend to raise Crohn’s and Colitis awareness this December 1 through the 7th?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • tracyJeitner
    3 days ago

    My son finally after 2 year and many specialists is having a colonoscopy for a biopsy to determine Crohn’s.
    It all started two years ago when his body was in so much pain and then the vasculitis appeared all over his upper legs and hips his weight dropped down to 121 at 6’3” tall )very scary) He spent 2 months in bed beside seeing doctors every few days and being a pin cushion for everyone to say maybe it’s A connective tissue disorder. In which we flew up to Pennsylvania and went to the University of Pennsylvania genetic department they declared they did not feel it was a genetic disorder and we went back toTX feeling hopeless. Flare cleared for a little bit till it came again this time our dermatology who determined the vasculitis and referred us to a friend of hers who is a rheumatologist. And yes way better then the other rheumatologist, genetic doctors, first round of gastroenterologist and hematologist. The new rheumatologist ran more labs just like all the rest but this time she ran test that would show bowl markers positive for both the IgG and the Iga in which I knew Kyle had much distress in the bathroom situation that I told each specialist about.
    It’s been a long haul over 2years and very frustrating and heartbreaking to see him in pain. I would not ever want my son to be diagnosed with any kind of disease but I hope this Monday his colonoscopy and biopsy shows that it is the Crohn’s disease so that way we can get him on a treatment plan and avoid these major flares that take him down and interfere with his quality of life. Thank you for posting your story it has been very helpful And shedding light on this horrific situation that you are suffer with.

  • JessicaH moderator
    15 hours ago

    I am so sorry to hear your son has been through so much @tracyjeitner. Our hearts go out to you both. <3 If you don't mind me asking, how did your son's appointment go this week? Wishing you both well. Hugs, Jessica- InflammatoryBowelDisease.net Team Member

  • Special K
    2 months ago

    My feet have been my weakness for so long and reading this made me feel less alone. Thank you for reminding me that we aren’t in this alone. I’ve been diagnosed 26 years and while my guts are doing well, the feet and hands are painful. I thougt I was being a “baby” but your article spoke my truth. Thank you from the bottom of my heart.

  • Jaime H moderator author
    1 month ago

    Hi Special K. You are far from being a baby and most certainly not alone. I’m sorry you are having to deal with these manifestations, as well.

    I hope your medical team are offering you potential solutions to help ease the pain and discomfort.

  • thedancingcrohnie moderator
    1 month ago

    @special-k,

    You are certainly not alone. When I am in a flare, I too suffer with this symptom. I hope you are finding relief these days and doing better. Rooting for you!

    Always dancing,
    Elizabeth (team member)

  • tara13
    2 months ago

    Oh I understand this far too well, my symptoms started when I was about 16, I was told it was IBS, anxiety and reflux. I was pretty much told learn to live with it. So I did for about 20 years. I got married, had my 3 kids. All the while fighting with my bad stomach, the really bad joint pain amen swelling, and a host of other strange things that I also put off as me being weird. Not until I had a perforated small bowel this past December did we get a DX, not I’m so sick I can’t work, I can barely go out of my house. All because no one listened to me when I was young. I I wish I could go back, I wish I had fought harder. But I can’t. Thanks for this!!

  • Jaime H moderator author
    1 month ago

    Tara13, I’m so sorry it had to come to such a hard situation in order to get diagnosed. The unfairness of it all is astounding.

    I hope you keep reading our pieces on the website and see that while there will be tough times (such as the situation I wrote about here), there can be good times when you receive the proper care.

    Jaime (team member)

  • Karin
    3 months ago

    I was diagnosed in 2007 with Crohn’s disease. The best way I’ve heard it described is that it’s like a snowball rolling downhill. It grabs everything in it’s sight autoimmune wise. I started with Crohn’s. I was given Remicade, but by the 5th infusion, I went in to serum sickness, and had a full blown reaction causing Autoimmune Hepatitis. This will be for life. Now i’m allergic to all non steroidals, and steroids as well. I can’t take biological meds now. It then went to Alopecia Aereata, RA, Hashimoto’s Disease, Osteoperosis, Scoleosis, AI Hep, etc. It just keeps snowballing. The AI Hep has made my body so sensitive to meds. I have exhausted all avenues, even going to the Mayo in Minnesota. I ended up in ICU there, as they didn’t clean out my port well. I got MSSA and Pneumococcal Staph infection around my heart. When I finally got home, they had recommended Entivio. My Dr took one look at the recommendation, and said absolutely NOT, as it can cause a rare brain infection, and since this all started, I’ve had one infection after another. After 17 peri rectal abscess drains, and 30 surgeries total, I have a colostomy for life, and I am down to chemo as a last resort medicine. There is nothing I and my Dr have not tried. I’m tired, my body is tired, and I’m left wondering when will they find a cure for this monsterous disease? People don’t understand the pain, sickness, and shame that comes with this disease. I take chemo that is meant for Non Hodgkins lymphoma, but no one cares, as it’s the wrong C word. We struggle daily just to get through it. There needs to be more awareness of just how people suffer with this. I would give anything to find something to take. With Humira, I never got past the TB test. Came back borderline, but dormant. Had to do 4 months of treatment, only to get shot down being able to try it. I’ve tried everything. It’s exhausting. Just wondering, anyone heard of any new treatments? The chemo is breaking down my bones, so I went on Forteo shots daily, which caused my bones to hurt even worse. My heels hurt so badly in the mornings, it’s hard to walk.
    I appreciate any feedback I can get!

  • Jaime H moderator author
    1 month ago

    There are new treatments on the horizon. Unfortunately, I don’t have the information available with projections of when they will come available.

    It might be worth it to talk to your doctor to look into trials for medications used to treat autoimmune-mediated-diseases that are not injectable and come in pill-form, as well as discus studies and bio-electronic devices.

  • Buxtonmama76
    10 months ago

    I was away on a wonderful trip with my husband the first time it hit. Now I am dealing with the things that go with Crohns, arthritis, neuropathy, osteoporosis. Humira has made the quality of my life much better!

  • Jaime H moderator author
    1 month ago

    So sorry that I’m just seeing this. But am so very happy to see that you are experiencing better days!

    Jaime (team member)

  • Poll