Barbarann

First off, I want to thank Marc for running an entire marathon for me and letting me tell my story. I feel so honored and could never explain how much Team Challenge has meant to me over my illness, how it has truly become a second family to me. One year, I was ecstatic to be the honored hero of our chapter’s marathon, but due to the severity of my illness at the time I was unable to attend a single event.

Here is my story: When I was 23 years old, I developed severe abdominal pain, diarrhea, and severe blood loss in my stools. I was in my second year of school to become a Physician Assistant, and we had recently learned about IBD, but at the time I thought it was so uncommon and the thought that I might have it never crossed my mind.

I was very busy with my internship year and had been working the night shift at the ER, so I convinced myself in February of 2008 that I must have picked up a GI bug in the hospital. Eventually my bleeding stopped and I didn’t feel too bad so let’s fast forward a few months to May, where I went to Mexico to compete in a triathlon. It was here that the bleeding became very severe and it was even more frightening being out of the country. I was able to complete my triathlon and then quickly rescheduled with the GI (I had canceled previously when the bleeding stopped and convinced myself I was fine. Honestly, I was quite embarrassed about seeing a GI and having to talk about my bowel movements, that would quickly change).

Even before my first scan the doctor listened to my story and heard my symptoms and said “You have IBD, let’s scope you tomorrow and see whether it’s Crohn’s or colitis.” That question still lingers today, leaving me with ongoing indeterminate colitis/chronic antibiotic dependent pouchitis. The scope looked more Crohn’s like, but my antibody testing was more consistent with UC. I was put on prednisone and gained a ton of weight; my face was huge and my blood sugars were on the rise. I eventually weaned off the steroids and had a horrible flare which led to me starting on 6-MP (like Imuran). Within five days I started vomiting black tar and by day ten I went to see the doctor and requested he order labs to rule out pancreatitis (a rare side effect of the med). The doctor told me to stop reading side effects but did humor me by doing the blood test. Sure enough, I had developed pancreatitis and was admitted to the hospital for the first time. The medication was stopped, which meant steroids were resumed and Remicade was now added. After four months of weaning steroids, it was apparent Remicade wasn’t working, so it was back on steroids now, four months of Humira. Unfortunately, there was no response. I was now sent to my third GI after being told “you are way above my pay grade” from my first GI.

It was at this third GI’s office at my very first appointment when I saw a Team Challenge flyer, and thought this looks up my alley, so I joined. My first half marathon was in 2006 at the Arizona Rock N Roll race and had run it many times since. I think it was fate that brought me to that doctor who had helped me so much and ended up leading me to my TC family. When I say family, I really mean it. I have two Aunt Robins, one genetic and one bound by something thicker and deeper than blood. My Team Challenge Robin Brody.

This new GI was suspicious of Crohn’s, at least he labeled me that way so I could try methotrexate. Finally, something worked and I was able to get off steroids. At this point I was now 27 years old and wanted to start a family soon. I actually would have preferred to wait, but knowing my health would only deteriorate with age, I decided it was now or never. I Had to stop methotrexate to get pregnant and other than mild gestational diabetes from previous steroid use I had my healthy baby daughter in October of 2011. However, being off methotrexate after her birth I developed shingles in my eye and then a bad IBD flare. In retrospect it may have been triggered by clindamycin use for a tooth abscess, which then led to C. diff which took several treatments and many hospitalizations.

It was at this point methotrexate was no longer working, biologics were already deemed useless and without 40+mg of prednisone they could not get me out of the hospital, so it was decided that I would need to have J-pouch surgery.

They removed my entire large intestine and reshaped the last of small intestine to make a fake colon. I had a temporary ostomy bag that was reversed a few months later (to allow healing). It was here where my darkest days lay ahead. My daughter had just turned 1 and I was working full time as a physician assistant, but I had to go on unpaid medical leave as my health was slowly deteriorating. My surgeon told me I had IBS and my GI told me it was a surgical issue. Six months of pooping 60 times a day (yes, you read that right), I had to literally live out of the bathtub because I couldn’t wipe, it was so painful. I had to wear adult diapers because I could not even walk from one bathroom to the next. I had lost so much weight, I weighed less than I did when I was 12 years old. Still, no one would listen. In our society standards people would just tell me how good I looked at this weight; I was literally dying.

Finally, I had such an extensive bowel obstruction you could literally see air moving through, it looked like an alien, and hurt like hell. I spent more time in the hospital than home, but thanks to my GI he was able to negotiate with my insurance to get them to pay for me to see the surgeon at Mayo. She was my savior! She immediately gave me a diverting ostomy bag to ensure it would help before preforming even more surgeries. I finally felt amazing.

It wasn’t easy as I had to wait two months just to get on her schedule but in February of 2014 after an almost 7-hour completely laparoscopically surgery she had to remove my entire pouch and remake a new one. Luckily, she was able to do it, and spare more bowel than expected. Again, I was back to my ostomy bag while things inside healed. However, this would take longer than expected and require many more hospitalizations. When I was discharged after surgery I had been hallucinating on and off and although my mother tried to tell my doctors I was lucid when I spoke with them and convinced them I was fine. At home I would fall asleep while texting and send gibberish to my sisters, who alerted my husband, but he always found me just fine, and I wanted out of the hospital.

One night I had woken up due to my daughter crying and thought she had wet herself and gave her to my husband to change. However, she did not, my bag had leaked. Apparently, I had changed it and had no memory of anything after handing the baby to him. I ended up spiking a fever which resulted in being rushed to the hospital where they assumed I was septic. I was dying and my blood pressure was dropping extremely low and the ICU nurse was about to start a central line to give me meds to bring up my pressure to save my life. Then fate walked into my room.

The surgical fellow who knew me well, simply asked “has anyone given her steroids?”. No one had thought of this and I was in a massive adrenal crisis. If she hadn’t come and told them to try steroids, I wouldn’t be here writing my story. She literally saved my life. What happened was they had weaned my steroids too quickly and I had been hallucinating for days from adrenal insufficiency. They were treating me for the wrong condition (not that I blame them, sepsis made sense). I owe her my life and will never forget her, and my other children would not be here without her either.

I was still here but things were not good. I had developed multiple abscesses in my abdomen and had to have drains inserted that were flushed to clean, all the antibiotics, and I even developed bed sores… if it weren’t for my husband and now 2½-year-old daughter, I don’t know if life would have been worth living anymore. I was in incredible pain, and both mental and physically exhausted.

In July of 2014, I had my finally surgery and as much as I wish I could say my story ended there… it did not.

I developed more bowel obstructions and required procedures routinely to dilate the narrowing intestines. Fortunately, it was something I would be able to do at home and I continue to do so to this day. An ounce of prevention is worth a pound of cure (at least for obstructions anyway). In November of 2014 I started having joint pain and severe fatigue so I was sent to see a rheumatologist who put me back on methotrexate for IBD arthritis. I went from being completely unable to get off the couch to running 5 miles in two weeks.

Fast forward to March of 2015, and I ended up back in the hospital for an obstruction. The on-call GI seemed to have some new ideas up his sleeve. My prior GI, who I thank dearly for the 6-years he gave me, was out of options, and pleasantly let me switch providers (as they usually don’t allow). I was started on Remicade with methotrexate along with anti-fungal therapy, Entocort (instead of prednisone), and Cipro for chronic pouchitis.

In November of 2015, I wasn’t great, but I was finally able to run the Las Vegas Half Marathon with Team Challenge and with Robin every step of the way. I had been sidelined for years and although I walked almost all of the 13.1 miles, I finished! If I’m being honest, I did not expect to even make it that far. Exercise in anyway has always been my outlet, and no matter how sick I am I also just try to move, whether it’s swimming, biking, or even crawling. I do really love running, it gives the best endorphins, but my body doesn’t always love it.

This new medication regimen was working great and I come from a family with 9 kids in it, so having an only child was never really an option in my mind. I always wanted to have more children. Since my regimen was working so well, and I could stay on everything except methotrexate when pregnant, I made the decision to stop the methotrexate, and try to have another child. I had to wait three months after my last dose before even trying to get pregnant just to prevent birth defects. My husband and I tried for another 8 months after that and we knew something was wrong, but weren’t ready for more problems.

It turned out my surgeries left me infertile. My fallopian tubes were so damaged from scar tissue and were swollen, completely nonfunctional. Not only did they not work, but if I used treatment and got pregnant there was a strong possibility it would not work or I would have a miscarriage as the damage tubes can leak toxic fluid into the uterus. The doctor suggested I have nickel put into the tubes to prevent the fluid leaking. The other option was surgical ligation (cutting the tubes), but he told me no one would operate on me, nor did I want to be operated on.

My husband and I decided to do IVF and try without any intervention hoping to get lucky. If it didn’t work, we could always consider the other options. However, IVF is horribly expensive, and the doctor only gave us a 30% chance of success versus 80% if we did something with the tubes. We agreed it wasn’t worth more health complications.

However, we did finally have some luck go our way. On our very first round of IVF I got pregnant with a girl who we would name Lyla. As you can imagine it was a scary pregnancy after all I have been through. We knew the tubes still posed a risk, and while being concerned about that we had to deal with another IVF complication when we found out she had a blood clot where she implanted. Luckily, the clot resolved and the tubes no longer were a risk and we made it passed the first trimester. I had some signs of preterm labor, but everything was going great. My goal was to get her to 34 weeks, and I did it. Then when I woke up at 34 weeks and 1 day of gestation and l was bleeding.

She never moved again. By the time we got to the hospital Lyla was gone and they could not find her heartbeat. They suspected that her placenta started tearing away from the uterus, cutting off her oxygen supply. I just loved her so much already, and was really ready to bring my daughter home. I had overcome so much to get her here, but in the end after all the years, dollars, sleepless night, injections, procedures, etc. she wasn’t coming home. She was born sleeping shortly after and I’ll love her and miss her until I take my last breath.

After this, I was determined to have more children and I was feeling the best I ever had physically, so I underwent more IVF. The second round didn’t work, so for round three we opted to do a double embryo transfer with a male and female embryo. However, the universe had something else in store for us. Our last female embryo did not survive the thaw so they transferred to males. 30 short weeks later my miracle beyond miracle rainbow babies were born severely premature. When they were only 8 days old, I woke up bleeding profusely, demanding to go to labor & delivery to be treated, but they left me in the ER. Six hours later, I finally made it to labor & delivery, but by this point I had lost too much blood and was losing consciousness. I was rushed to the OR and given multiple units of blood.

Thankful, I survived again, and got to watch my boys grow in the NICU for 8 whole weeks before we could take them home. Unfortunately, that wasn’t the only issue around their delivery. I was diagnosed with valley fever and with the Crohn’s medication I was required to continue the antifungals for life. I also have a mass in one of my lungs that has to be monitored every six months. They also decided to stop my Remicade for several months. Soon my IBD started to flare so they decided to switch me to Stelara, and after months realized it was not working at all. By this time, I was in a massive flare and ended up on high dose Prednisone.

However, this time would be the last time I would ever be able to wean the prednisone. The dose was used so long that it destroyed the complete function of my adrenals. I now have primary adrenal insufficiency, which not only requires life-long steroids and other hormone replacement, but it comes with a life-threatening condition known as an adrenal crisis, which unfortunately I have endured a few times, the most recent being this past January. I am still currently struggling to get that under control. I’m on antibiotics for my pouchitis and those haven’t been working and even though my inflammation had been in remission for three years it has started to spike again. Since the birth of my twins, I’ve suffered with chronic pain, insanely severe fatigue, and anemia just to name a few.

In August of 2023 I was diagnosed with a thyroid tumor. I initially didn’t think it was that bad, but when I finally saw the surgeon last month, they informed me that I have a rare aggressive mutation that was not genetic. My guess is that it’s a result from all the radiation from the scans for the Crohn’s, but that’s just my suspicion. I need to have my entire thyroid removed next month, which is frightening because I have had so many complications from past surgeries and I’m currently having so many other issues with the adrenals and Crohn’s. I’m pretty sure Crohn’s or its treatment seem to be the cause of all my other problems.

This disease has been a nightmare, but I keep fighting, and keep taking it day to day. My TC family has been by my side this whole time, and I couldn’t have done this without them. My husband is my rock, and my children are the reason I keep fighting so hard. I feel fortunate that I’ve survived everything I have, and I hope to have some amazing years ahead of me. Thank you again Marc for running for me, for sharing my story, and bringing such awareness to all of our unique IBD journeys. Thank you all for reading this as I know it’s a long one and I shared a lot.

Marathon #75 – Recap