Stuck in the Middle with IBD
May 26, 2015 at 10:30 am roemottola 19 comments
When I was diagnosed with ulcerative colitis nearly a decade ago, I was told my case was “mild” and I should go on living my life. I had no idea what I was in for at that point. In fact, I was relieved to find out it was ulcerative colitis (which seems laughable at this point) after being told for more than five years that it was “all in my head” and I just needed to relax. I was told to take Asacol and resume my normal activities.
As it turns out (I’m sure you’ll be shocked by this) I couldn’t resume my normal activities. Inflammatory Bowel Disease (IBD) turned my life upside down. A few months prior to my college graduation from St. John’s University, I found myself unable to travel to take my finals and instead of jumping into the work force that I had prepared so hard for, I was just trying to get by.
Determined not to be slowed down by my disease, I applied to graduate school and got into my dream program at New York University. If I couldn’t work, I’d advance my career by getting my master’s degree. It was a great goal, but each day I was getting sicker, and I was deteriorating rapidly. I wasn’t eating, with fears of an accident during classes.
Four weeks into my program at NYU, I was waiting for the subway I noticed I could not turn my neck to check if the train was coming. I thought it was strange and mentioned it to my parents when I got home. A few hours later, when I got into bed, I couldn’t breathe. My family rushed me to the emergency room, where we quickly found out I had developed pneumonia from being so run down due to my flare up.
My return home after a week in the hospital was short lived. After a day or two, I couldn’t walk up the stairs without getting winded. A quick chest x-ray showed pneumonia in both of my lungs, which we later found out was caused by a hospital-acquired staph infection. I was rushed back to the hospital, this time to ICU, and was pumped with the strongest antibiotics available.
If you know anything about IBD, you know that antibiotics and digestive diseases make for a messy combination. In short time, I was diagnosed with C. Diff and I was back to the hospital for a third time. I had to withdraw from my semester at school and it took months to recover. I still have PTSD from this experience.
However, that was my only IBD-related hospital stay in a decade with the disease. I never had to have surgery for my IBD. None of my flare ups required an emergency room visit. That’s not to say I’ve had it easy. For a couple of years, I would flare up every three to four months. I would commute with the worst cramping you could imagine and my fatigue was impossible to overcome. I felt at times like a prisoner in my own home. Inflammation has popped up in my ears and eyes at various points. At the ripe old age of 27, I got shingles on my face.
Right before my wedding in 2011, I seriously considered having my colon removed, but it thankfully never came to that. My doctors found the right combination of Ascaol, Remicade and 6MP to manage my symptoms and I’m living a relatively normal life.
So why do I feel like I’m stuck in the middle? Like many patients, I look to the internet for support and a shoulder to cry on. On the internet I find amazing advocates who are doing so much to spread awareness and fight for patients. There is no price that can be put on the value of what they do. Yet their diseases are often significantly more progressed than mine. They are in the ER at a blink of an eye. Their chronic pain requires frequent surgeries and hospital stays. Some of the advocates I’ve followed through the years have even died from complications due to IBD.
Every time I go online to vent or complain about my symptoms, I find someone who has symptoms 100x worse than I do. I feel guilty…oh so guilty…for even thinking of complaining. I feel like I should be grateful that my disease hasn’t progressed beyond a certain point, but instead I am depressed that I don’t feel well enough to feel like myself.
I’m here to tell you today that you aren’t alone. Yes, you. You, who is well enough to work but feels exhausted all the time. You, whose IBD is progressed enough to be a pain in the ass (literally) but not enough of a pain to allow you to go on disability. You, who is flaring up and is in the bathroom 15 times a day but is still going to school. You, who is afraid to get in a car for fear of an accident.
You aren’t alone. You’re allowed to be in pain and you’re allowed to be pissed about it. Every day is a struggle for you. You learn to expect the unexpected with IBD. You may not live with a j-pouch or an ostomy, but you’re sick too, and it’s OK to grieve about your disease. CCFA’s “Escape the Stall” campaign wasn’t egregious to you because that’s the life you live every day.
I hope that I could be your voice. Thank you, Rebecca Kaplan, for inviting me to blog about IBD here. I hope that I do this group (that’s stuck in the middle just like me) justice. I invite you to let me know what you think in the comments section below or connect with me on Twitter @RoeMoPR.
Entry filed under: Advocates, General. Tags: advocates, CCFA, crohn's, crohn's disease, Crohn's Sucks, ibd, inflammatory bowel disease, mild disease, New York City, uc, ulcerative colitis.
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Caring for Crohn's & UC 
1.
Tami K | May 26, 2015 at 1:58 pm
yes, yes, yes! I totally understand this. I’ve had crohns for 28 years at least but have had very few flares compared to most people. Doesn’t mean I don’t have other issues that go along, but my course definitely hasn’t been as bad as many.
2.
roemottola | May 26, 2015 at 2:02 pm
Tami – every day is difficult, no matter the severity of your disease. I hope you are well. Thanks for commenting!
– Rosanne
3.
Nita Jain | May 26, 2015 at 2:46 pm
Hi, Rosanne. I can totally relate to your situation. I have struggled with GERD and IBS (diagnoses of exclusion are so frustrating) for a few years now, and I have often had to take medical leaves from college when my symptoms became too severe. I, too, acknowledge that many people struggle with worse ailments, but that doesn’t mean that we don’t experience suffering as well. Thank you so much for writing this piece; you’ve managed to put into words the internal struggle I’ve been experiencing for quite some time.
4.
roemottola | May 26, 2015 at 2:55 pm
Thanks for your kind words Nita. I’m sorry to hear about your GERD and IBS, I can imagine the frustration. I hope you find peace and feel well.
– Rosanne
5.
Susann | May 26, 2015 at 7:51 pm
Great work Rosanne. I am sure your blog will help many people who feel they are in this alone. 👍💛
6.
Emily | June 8, 2015 at 8:13 pm
Great post. I see people with IBD much worse than mine and I feel guilty. Guilty I complain about how sick I feel. Guilty that the some how seem to accomplish more than me. Reality is even people in “remission” are sometimes still so very ill.
7.
roemottola | June 9, 2015 at 9:20 am
Emily, agreed. Even in remission, I am not “normal” and I deal with this disease in a different way. I can function but every single day is a struggle. Don’t feel guilty. There are others like us out there.
8.
Beth | June 8, 2015 at 10:57 pm
Thanks for sharing. My 9 year old has been diagnosed with ulcerative colitis. It’s difficult to travel and we keep spare clothes at school. He’s on Remicade which worked for 3 months and then he flared and I feel so bad that I don’t know what to do to make him feel better.
9.
roemottola | June 9, 2015 at 9:17 am
Beth, this breaks my heart. Your son faces a long road ahead but I am confident we will make great strides fighting this disease in the future. Everyone has a different mix of cocktails that work for them…it’s just finding it that can be an issue. Wishing him, and you, strength to fight.
10.
Mags | June 9, 2015 at 4:52 am
Thank you so much for writing this. I too have IBD (Crohns) and like you I only have it mild, but yeh it does mess with your life, being scared to eat and then maybe go for a walk, no can do cause your so scared of embarrassing yourself, you need to constantly know where toilets are, and how long it takes to get to them, and of course you can’t run because if your cramping the only way is slowly. It’s certainly changed my life in many ways, people don’t realise why your always so tired either. Will I let it ruin my life though, no way, I will not be beaten.
11.
roemottola | June 9, 2015 at 9:15 am
Mags, that’s the spirit. You will not be defeated. We, as an IBD community will fight together.
12.
Karen Bix | June 9, 2015 at 8:28 am
Thank you so much for writing this. I had just completed an MA in Creative Writing at NYU when I was diagnosed. After I left NY I decided I wanted to move onto my Ph.D. but was told that I needed to do a second MA – in English in order to do so. Two weeks into starting a second MA at UW-Madison I was hospitalized with a toxic megacolon. I was on the verge of puncturing and it was touch and go for several days – I could have died. But through the help of a brilliant GI I was able to avoid surgery – that time. I remained the hospital for five weeks taking the highest possible degree of steroids that a human being can take. While I was there the chair of the English department came to visit me. He expressed his sympathy and then advised me not to drop out of the program and forget pursuing a career as an English Professor because “the profession was far too demanding for someone who had serious health problems.” (This was in 1993.) I didn’t challenge him. I went onto finish the MA and then switched to a Ph.D. program at UMD. About a year later, shortly after I passed my prelimns, I had another massive flare. This time I lost my colon. I had the prelminary surgery for a J-pouch and came out with what supposed to be a temporary illeostomy. A few days later my temperature spiked. I was in great pain but my surgeon told me it would pass and prescribed anti-biotics. He did nothing though the pain got worse. Eventually I found out there was a leak and that I had a massive abdominal abscess. The J-pouch was ruined and I was told that I would have to keep my illeostomy. About a year later I found my way to Cleveland Clinic and the famous Dr. Fazio redid the J-pouch entirely. I have a compromised digestive capacity. It works but in combination with continued disease activity my work and daily activities are somewhat impaired. This has meant that I have made only episodic progress on my Ph.D. I am now in my 14th year of dissertating and the department has informed me that they are unwilling to extend my time to completion anymore. So despite all my determination to prove the chair wrong and finish,I failed. We need to keep fighting for equal access.
13.
Karen Bix | June 9, 2015 at 8:34 am
Oh dear, I just reread your post. I was not trying to diminish your experience or to outdo you somehow. Rather, your honesty about your experience as a graduate student inspired me to tell my story for the first time in a forum like this. I am sorry if I missed your point entirely.
14.
roemottola | June 9, 2015 at 9:15 am
Karen, no, thank you for sharing your story. We all have our stories and you are a superhero. My point of this all is that we all have our own issues fighting these horrible diseases and nobody should be afraid to share their story or to complain about their problems due to IBD.
On a separate note, do you have anyone helping you fight this decision? It sounds like you need an IBD advocate to explain to them what you’ve been through. I’m so sorry to hear about this.
Thank you so much for taking the time to comment and share your struggle with IBD.
15.
Karen Bix | June 9, 2015 at 10:08 pm
I’m grateful for your understanding and kindness. I have never shared my story on any of the IBD support blogs before this. I think it was the honesty and candor and confidence with which you tell your story that gave me the strength to share my own. Telling it here has somewhat lessened the pain and embarrassment (or shame) that I have carried inside of me for so long.
Yes- terrific idea about finding an IBD advocate. Do you or anyone following know where I can locate one? I can be contacted at ksuben@aol.com and @kbix on twitter if anyone has a reference or lead. (I did contact the CCFA and they sent me good information and advice but as far as I know they don’t offer personalized advocacy.)
Thank you again.
16.
roemottola | June 12, 2015 at 12:18 pm
Karen – have you tried the Jennifer Jaff Center? Jennifer Jaff (a lawyer with IBD) used to run Advocacy for Patients with Chronic Illness and when she passed away they continued fighting for patients. Here’s a link: http://www.thejenniferjaffcenter.org/
I’m not sure how active they are currently BUT if they cannot take your case on, they may know someone who can. Good luck.
17.
Renee Gaudet | June 9, 2015 at 3:48 pm
Thank you so so so much. I have UC and it is manageable with meds, and b12 supplements, and i have flare ups, but not very often, only a couple a year. I have been diagnosed for just a year and a half, and while i have found a balance, every once and a while, life stresses, not eating as i should, an attack comes on. Not a full blown flare up, but the ever familiar run to the bathroom nothing stays in. And while I seem normal most of the time, i still carry this illness. No one seems to get it, because i seem so normal most of the time. I try to find support when a flare up happens and all i get is shrugs. If i was more sick i would have more support and more understanding but they just seem to think, yah ive had mild stomach flus too. But it is so much different and if you drop your guard for just a day or two everything goes into the crapper (did i mention i like colitis puns?). I have it really great on the colitis scale, but suffering is subjective and you speak the truth, anytime you look for support its hard to find. Thank you so much for this post, you have reminded me that whatever my struggle is, it is mine and suffering is not a competition, it should be met with compassion.
18.
roemottola | June 9, 2015 at 3:53 pm
Renee, I’d argue that a couple of flare ups a year is a lot. (And don’t you just LOVE those comparisons to the stomach flu?) Remember, there are so many of us out there. 2.6 million in just the USA. We must support each other, no matter the level of disease. Be well and thanks for the comment.
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