I had just returned to work from maternity leave and was about 5 weeks back on the job, excited to get back into a routine and work a flexible schedule to be home with my babies one day a week. Our Grand River Chicago team all went out to lunch on 8/31 for pizza (MY FAVORITE) at Connie's pizza for a delayed celebration of my return, and within hours of coming back to the office, I started having horrible abdominal pain. I thought I had gas; it was a buffet...you have to overeat :) So, I took my Tums and Gas-X, and didn't have anything else to eat that day. I took Imodium that night, and it seemed to settle things down and keep me out of the bathroom.
The next day, I still felt really crampy, so I took more medicines including Pepcid and Prilosec - this started to make me feel even worse. The cramps continued, but I tried to stay busy at work to distract myself. The following day, Friday, I put myself on clear liquids (lipton soup broth, gatorade, tea, italian ice, jello, etc.) and by noon, had to call my husband to bring me home from work as the abdominal pain felt like someone was stabbing me. The pain went all across my upper abdomen, right where I have that wonderful baby bump I had wanted to get rid of. The pain spanned the entire width of my abdomen. It wasn't in the stomach, or right side areas like appendix, gall bladder, or pancreas. I remember leaving work, cursing Connie's Pizza in front of the team. For the first time, it started to feel like this pain wasn't gas or from constipation - it was pain that didn't subside and something was wrong.
GI issues always scared me. I had high stress back in my college days, trying to maintain a 4.0 average and work full time. I had lots of stomach issues and was diagnosed with the infamous and all encompassing Irritable Bowel Syndrome (IBS). I hated the colon cleansings, the barium drinks, the feeling that you were crazy talking about stomach/abdominal pain - and everything coming back "normal". However, I had never had issues with IBS since college, so thinking it was that again seemed odd. Plus, the pain I was feeling wasn't anything like I had in college. It REALLY hurt - to the point that I couldn't function; I just wanted to bend over and clutch my abdomen and cry. I'm not sure how, but I made it through Saturday on clear liquids and spent time with my family, my parents and my brother.
On Sunday, Sept. 4th, I cantored at mass at St. Mary's. I got all dressed up and looked good, but felt awful. My husband was proud of how well I sang, considering how much pain I was in. When we got back from church, we went to my parents house, and I had some more liquids and the pain persisted. I couldn't figure out why after 5 days of clear liquids, my abdomen hurt so bad. My husband and I decided to head to Dreyer Medical Clinic Urgent Care, while my parents watched our babies.
I met with the doctor and he said they couldn't do anything for me in urgent care, but wanted me to head to Rush Copley's Emergency Room immediately. So, we headed over there. The wait was fairly short for the ER. I was put on an IV and spoke to the doctor about my symptoms. It felt great just getting fluids, but the pain persisted. The CT scan with dye showed no signs of problems (go figure) and the doctor gave me Bentyl for the "spasming" and Hydrocodone for the pain. I went home feeling no better than I had come in, but figured I would continue my liquid diet and the new meds. My cousin Katie, who is a doctor, started calling me daily. I was grateful to have someone to run things by, and ask questions too. We hadn't spoken for a long time as work was so busy, so I was grateful to reconnect with her - just wished it was over something more positive and I didn't sound like everything was all about me!
Monday, 9/5, was the Labor Day holiday, and we visited some family friends - the Wols - at their house. I stayed on liquids and had a few bites of chopped potatoes, but was too afraid to eat anything else as I knew my abdomen was still not happy. Not eating/drinking was starting to feel better than anything. It was a nice day and a good distraction from the pain.
I worked from home on Tuesday (9/6), while my parents watched the kids at their home - our typical daycare situation which I'm forever grateful for! I continued trying the new meds and staying on my clear liquid diet. The pain persisted. By Tuesday evening, I told my husband to please take me back to the ER; I was in so much pain. My parents graciously kept the kids that evening/overnight, as we knew it would be a long evening. We waited over 2 hours; the ER was packed. Once I got to the room, they gave me another IV of fluids, and some IV pain meds - I'm not sure what it was, I just remember it didn't help. The nurse in the ER gave me a run down about how people abuse the ER system and come in for just random things, and stuff like stomach pain was really hard to diagnose. I know he was just chatting, but it sounded like he didn't think I should be there. When I spoke with the doctor, I asked him to test me for H Pylori (my mom had that years ago and continues to have side effects from the lack of treatment to this day). He did the blood work up without question and ordered an X-ray. The X-Ray showed my bowels were impacted - I realized I hadn't gone to the bathroom since I took my Imodium on 8/31, but it didn't seem to matter considering I was only getting liquids and usually Imodium backs me up for a while. He recommended continuing the meds from the last ER, following up with my GI doctor, and trying some suppositories to "get things moving". I went home in tears, as I felt no better leaving than when I came in.
On Wednesday, 9/7, I worked from home, but couldn't focus at all. I just kept thinking of the pain. I followed up with 2 suppositories - nothing happened. Then I tried a full enema - still nothing. I called my mom, who is a nurse, and she said if I was impacted, I may have to have a manual removal done - EWWW. Within a few hours, I noticed I was bleeding droplets of blood, feeling like I had to go to the bathroom, although still not going to the bathroom. I finally called my old GI doctor from college. I told them of the ER visits and now the bleeding, and my doctor fit me in for a colonscopy (not again!) on Friday. The pain persisted.
Thursday was the prep day, and I again tried to work from home but couldn't focus much with the pain and dreading the huge jug of golytely that I had to drink. I was already in such pain, I couldn't fathom it. At 4pm, I started drinking. It was one of the most miserable nights, and lots came back up. I just continued to pray that God would allow me to get enough in so I could do the test. I had to have this test done to see what was going on! Thankfully, the little I could get in worked. I was up all night with horrible cramping and bathroom visits, but was grateful to be fit in for the test on short notice.
On Friday, 9/9, my mom took me to the test with our sweet baby Lucy in tow. My husband had to work due to an important meeting, and my dad stayed at home with Drew. My dad was declared legally blind last year, so he is very capable at home with my 21 months old son on his own, but not so much with 2 kids - one of which is 4 months. (That's a challenge even for me balancing both babies on my own all day!) The doctor was running late, so we sat in the prep room for over 2 hours. Lucy squirmed and my mom tried to console her. I tried to hold her in the bed, but the pressure from her 11 lb body on my abdomen was too much to bear. It had been like that now for over 1 week. I hadn't really "held" my kids since 8/31, 9 days. When my GI doctor came in, I gave him the run down of everything - the ER visits, all the meds from the ER, the anti-acids making things worse, the horrible pain, the bleeding, etc. He remembered me from college - we are both alumnus of Benedictine University in Lisle, IL. It was nice he listened, and he said he would do an upper GI along with the colonscopy since I'd be "out" already. I was grateful to get both done! They pulled me into the test room, and knocked me out.
I woke up in the room, and the nurse came in with the pictures. My doctor had found esophagitis, duodenitis, gastritis, a hiatal hernia, a stomach ulcer, and internal hemorrhoids (the culprit of the bleeding most likely). My whole GI tract looked like a crime scene. I almost cried when I saw the pictures it looked so ugly and bumpy and red. We asked if my doctor would be coming in to discuss, and they said he had to leave for hospital rounds. So, the nurses paged him and he wanted to speak with my mom. He told her I was really inflamed and he had taken a bunch of biopsies to research further. We wouldn't get results until the following week. He prescribed Zantac to help with the inflammation, and wanted me to schedule an ultrasound of my pancreas and gall-bladder. So, we went home, still on liquids, still in pain. My mom and dad took care of me and my kids the rest of the afternoon, until my husband Adam came to pick us all up and bring us home. I was starting to feel weaker and in more pain each day, but I kept at least getting those liquids in.
Friday night I continued to have severe abdominal cramping. I woke up Saturday morning and had a cup of tea - the pain worsened. I was so frustrated. Even a cup of tea made the pain start up. So, I decided to take the Zantac and swish it down with some Ensure to see if I could get some nutrients in me. Within minutes, I was in horrendous pain - the worst I had ever been. I vomited up the Zantac, and the pain continued. I got a call from my primary care doctor's office, who was checking in on me, based on all the notes in the system. I was sobbing on the phone in such pain, and they said to go back to the ER immediately. I was beside myself, but knew the pain was just too much to bear at that point. My mom came over to get me, so my husband could hang out with the kids for a bit - it had been such a weird week and a half with me being so ill. We headed off to the ER for the 3rd time; I dreaded it.
The ER on Saturday, 9/10, wasn't busy at all. We got triaged right away and called back within 1/2 hour. Time seems to last forever though when you're in pain. I didn't think I would die, but knew something was terribly wrong. We got to the room, and watched all the nurses and doctors laughing and having a good time outside the room. My mom started to get mad that no one was coming in to at least start an IV or give me something for the unbearable pain. About 30 minutes later, the doctor came in herself. I told her the story, and showed her the pictures from the GI exams. She took one look and said she would start the IV, give me a large dose of dilaudid for the pain, and get me admitted right away. She also would get the ultrasound done right away. the ultrasound tech had already arrived, and asked if she could get started. I looked at my mom in tears, and my Mom made them give me the dilaudid first to just get some relief. I was happy things were moving forward at least. The dilaudid made me extremely loopy and out of it, but for the first time, I didn't have any pain.
At this point on Saturday, I really don't remember anything else. I remember my mom leaving and my husband coming over, but honestly have no remembrance of being admitted to a room or what happened after.
On Sunday, I remember seeing my GI doctor - who amazingly came in to see me every day I was in the hospital! - and he ordered a hydascan on my gallbladder to see how it emptied. Although the pain wasn't from the gallbladder area, he wanted to rule that out as well. Unfortunately, the scan couldn't be done until Monday, so Sunday was a waiting game and managing the pain with large doses of dilaudid. I do remember a nutritionist coming in to see me. She asked if I needed her services. I said I was extremely ill, had lost 10 lbs and could barely get down liquids. She looked at me and said "I guess you won't be needing my help on eating a balanced diet today?" I smirked and told her I would keep it in mind when I could eat again. I didn't watch tv or read or surf the web - I was really out of it and focused on the pain. I think my parents brought Drew and Lucy up to see me. I sat in bed, and read "The Hungry Caterpillar" to Drew. It was nice to have him sit next to me, not squirm, and just to smell his hair. I had trouble not crying. I tried to hold Lucy, but didn't have the strength and couldn't without the pain starting again. It was nice to have some visitors and see my family. Drew couldn't stay too long; he kept wanting to page the nurses by hitting the red cross button on my bed. Ten buttons, and that was the one he wanted to hit. The nurses seemed to enjoy seeing the kids as well. I remember getting more dilaudid that night, and think I just passed out again.
By Monday, I was ready for the scan! They took me down early in the morning. They basically have you lay flat for 1 hour, while a dye is injected in you. It highlights the gallbladder and the areas that it pumps into. The test measures the amount and speed of pumping, and the techs monitor your pain. After 1 hour, I had to pee, so I was grateful the tech let me get up before the second part of the test, when they inject you with another medicine to start contracting the gall bladder. That was horrible - the cramps, the pain, the nausea - I thought I was going to die. I remember laying there on the table for 1/2 hour crying the whole time, but trying not to sob so I could stay still. I don't like to cry much; I was starting to feel like such a wimp but I was really going through so many emotions and so much pain - it was hard to bear it every minute of every day. The techs were so nice just trying to console me; they apologized profusely - even though it was no fault of theirs.
The female tech there - also named Elizabeth - mentioned that after her pregnancy, she had nausea and abdomen pain like mine. After she had the same test, which was excruciating as well, they knew she had to have her gall bladder removed. After the surgery, she felt back to normal. I felt a little pang of hope, but the cramps persisted bringing me back to reality. A nurse brought me back up to my room, and I think I cried the whole way upstairs - the gall bladder induced cramps were ongoing. The nurse was sweet, and told me to pray. I remember her telling me that God favors little children, and since I had two, God would take favor on me. I don't remember why I recall that, but there was something about her that was comforting. When we got to my room, she put a rosary in my hand. I don't think I've ever said the rosary, but there was something "familiar" about it and that night, getting dilaudid every 2 hours, I started praying as hard as I did when my brother David was diagnosed with cancer, my sister had her brain tumor, my dad went blind, my mom has a lupus flare, and whenever anyone gets seriously ill. (Yeah, our family has some amazing genes.) I prayed the rosary until I fell asleep.
A few hours later, my GI doc came in. He said my hydascan showed my gallbladder wasn't functioning correctly, diagnosing me with biliary colic. He wanted me to talk to the surgeon to get it removed. I guess normal people have a count above 40 on the test, and mine was an 18. Adam and I talked it over with the doctor; our only concern was I wasn't having the symptoms of a bad gall-bladder except from the cramps during the test. Plus, I always ate really healthy, and if it meant keeping a mis-functioning gall bladder and not eating fast food, that was ok to avoid the risk of surgery when I was so ill. The pain location and what I was drinking that triggered the severe pain didn't add up. We talked to the GI doc and surgeon, and agreed to the surgery on Tuesday, pending no results showed up in the biopsies. My GI doc briefly mentioned that he saw an elevated count on some cell count in my ER labwork. He said it showed up in one ER visit, but not another. He said he was having the biopsy evaluated for it. I asked my cousin Katie during our nightly call what he was referring to as I didn't catch the name, and she mentioned the word "eosinophils", describing them as white blood cells that show up in your blood. They are not often looked at in lab results, but she said it was good to follow up on. I got some more dilaudid, said my rosary again, and fell asleep. (I'm sparing the 2 hour intervals of vital sign checks, more meds, etc. through the nights; the story is long enough). I do remembering telling my nurse to call St. Mary's and let them know I was at Rush Copley. They came back in less than 5 minutes saying they had given them the message. I remember feeling comforted hearing that.
Tuesday, 9/13, had a lot of activity. I was still NPO (not allowed to eat/drink anything) in prep for the surgery. The surgery was scheduled at 1pm, and there was activity with the anesthesiologists coming in, etc. I was starting to get scared, and prayed every few minutes asking God to make it clear what we needed to do. I didn't want to have surgery only to find that removing the gall bladder wasn't the answer, and dealing with horrible abdomen pain in addition to surgery recovery. I was miserable enough.
The hours passed, and 2 hours before the surgery, my GI doctor walked in. He sat down and said that my biopsies showed that I had Eosinophilic Gastroenteritis (EoG). I've also seen it called Eosinophilic Gastroenteritis Disorder (EGID). Basically it is white blood cells that are allergens, fighting off allergies in your GI tract. The cells can be detected in blood work (which they were in mine), and in biopsies (which they were in great masses). There are no epi-pens, no benadryl, no anaphylactic shock, and nothing visual that anyone can see when someone is fighting this chronic disease. Usually people get horrible abdominal pain (score!), constrictions in their GI track, vomiting, diarrhea, nausea, and other symptoms. The GI track fills with eosinophils that fight the allergen. Treatments depend on the eosinophil disorder. For EoG, the treatment is steroids and diet to remove the allergens. Since steroids have long-term effects, the goal is to use steroids during relapses and focus on diet.
My eosinophils were low in my blood work (but grew in size from my first ER visit to my third - even on an all liquid diet), but they were all over the tissue in my esophagus, stomach, and small bowel. My doctor was confident of the diagnosis. We immediately canceled the surgery - and said a bunch of thank you prayers. The issue then was the treatment. My GI doctor said he had seen about 10 cases of eosinophils in 25 years of practice. He had seen a child that was allergic to preservatives, and a man who was allergic to mold on the roof (he was a roofer). Others had food allergies. While eosinophils would often show up in scopes in years past, they were always something ignored or explained as something else. It makes sense, as in most of my research, people are often told nothing is wrong and/or the diagnosis is IBS. I knew the issues from college weren't from this, as my biopsies were clean - I truly think that was just stress.
My doctor did some research, and they started treating me with IV steriods. Once I finished steroid therapy, they would have me start doing allergy testing in 6 weeks. Allergy testing is not always successful, as the reaction is internal not external. He mentioned to find a specialist (he didn't know of one), and he would defer to them. I was grateful he spent so much time with me. The nurse practitioner came in a bit later, and told me they would put me on clear liquids now that the surgery prep was over, and gradually increase my intake up to solid foods while I was on the steroids. My goal was to get down solid foods, steroids, etc. and go home (taking the pain meds as needed, and a ton of other prescriptions). Adam and I spent time reading the article the nurse printed off, and I started looking online for a specialist. I came across the site http://apfed.org. There was a doctor finder for specialists in the area. I did a search across 100 miles from our zip, and there was 1 doctor - at Northwestern University named Dr. Nirmala Gonsalves. Adam said the name "Dr. Gonsalves" was familiar, and sure enough, she was the author of the article that the nurse had printed out for me to read (it was pretty clear I was the only one who really read the article in full). I was familiar with NWMH, as my brother had been treated there for 3 years with his cancer. I called them up immediately and made an appointment at the earliest available (10/6), then called the allergist to schedule the allergy testing 6 weeks out. Fr. David and Fr. Mark from St. Mary's both came to visit me, celebrated the sacrament of the sick, and prayed with me. It was nice to see friendly faces.
Wednesday/Thursday (9/14-15) were managing pain, steroids, and trying to increase my diet. Some hours were good, some were extremely painful. I upgraded from clear to full liquids on Wednesday (creamy broths, etc.), and had to take oral hydrocodone for pain. It didn't help. I ended up back on massive amounts of dilaudid. Once back on clear liquids, I seemed to be ok. The staff wasn't happy with that. The nurses were very helpful, telling me to try things "easy on my stomach" like lettuce. I tried to be nice, but seriously? I have been in pain for 3 weeks, lost 15 lbs, and your first solid food upgrade recommendation would be lettuce? Not a single one of my nurses knew what eosinophils were, let alone the treatment. My GI doctor said no one there was familiar with the treatment. I felt good we were starting a treatment similar to what was done in the medical journal (which was pretty vague and mostly steroid management and removing allergens - which we couldn't test for until 6 weeks of steroids passed), but I also felt a little nervous that these weren't people that were experts in this.
I remember my parents brought my kids up on Wednesday, as Adam captured this cute picture of Lucy.
By Thursday, 9/15, I didn't feel tons better, but thought I was managing ok on clear liquids enough to control the pain. If I could just get solids in me, I could go home. I managed to get down my steroids, and a bit of mashed potatoes (flakes with water) and pureed chicken. We waited 2 hours, I felt ok, so I was released. Six days in the hospital and finally home. I just had to keep this up until 10/6 when I could get to Northwestern to find out more from the EoG team.
Friday, 9/16, I kept up with liquids and steriods, staying with my parents so they could watch me and the kids again. My mom made me broth, straining all the noodles or anything else from various soups to give me a variety. We made sure I didn't have anything in it with milk, soy, wheat, and other "top" allergens (just to be safe). The pain came and went, but not enough to go back to the hospital. I couldn't help Adam much at home with the kids that night; the pain hurt too much and I couldn't hold Lucy. It was extremely frustrating.
Saturday, 9/17 and Sunday 9/18, were a blur. I remember staying home, and my parents and brother coming over to hang out, eat and watch football. I was blessed not to have any appetite, so I didn't crave anything really. I didn't feel hungry and didn't feel full. I played with the kids as much as I could, but still could barely hold Lucy. Not only did it hurt, but I had also gotten really weak. Saturday night, the effects of the dilaudid wore off, and I went to the bathroom for the first time since 9/8 - the night of my coloscopy prep (8 days prior). Consistency was odd, but I figured it was fine - at least things were starting to move. By Sunday night, I started getting severe cramps again in the late evening, and spent about 1 hour in the bathroom. I was having diaharrea, but again, I didn't think much of it and the cramps got a little better after each episode which I thought was a good sign.
On Monday, 9/19, I went over to my parents again, and sent another update to work, stating I would try to start working again gradually. My work had been very gracious with my maternity leave and new health issue, and told me to take my time and focus on me. It was a huge relief to have such an amazing company to work for. I actually was starting to miss work, miss routine, miss feeling well. I had some liquids for breakfast with my steroids and went up to lay down as the cramps were hurting. I turned up the heating pad, but it didn't really help. My mom made me homemade vegetable broth that day, so we could control the ingredients, and it smelled good while I was in bed upstairs with continued abdominal cramping. I never thought I would look forward to broth. I was getting tired of jello, ginger ale, gatorade, popsicles, broth, and italian ice, but didn't really want anything else. I think I had tinges where I really craved a cracker or bread, and then some canned peas or green beans (probably because I needed carbs and sodium so badly), but the cravings were never more than a passing thought and never enough to even attempt to eat them, as I knew what would happen. I didn't want to induce the stabbing pain. Even with the liquids, I still had some pain so I knew things still weren't right even with the steroid treatment ongoing since Tuesday (nearly 1 week). I had two servings of the broth that day, and didn't feel well after each. It wasn't unbearable pain, but I did notice I didn't feel well after each and the cramps kept coming back. It was interesting how I could really define what was a gas cramp (like when I had to go to the bathroom on Sunday night), and what the abdominal cramps were like - it was confusing at times, since sometimes I had both, but they were clearly unique.
That night, Monday night, Adam came and picked us up after work and brought me and the kids home. I couldn't help much, as my cramps were bad, but I tried as much as I could. There was some tension building up, as Adam didn't want me doing anything but relaxing, and I missed being Mom and Wife. It had been 20 days since it started - a blur - but still enough to know that I was missing life. My daughter Lucy kept growing, and was on full formula as I had to stop nursing her. My chest hurt badly as it swelled on top of everything else going on. I still couldn't hold her, but took a few pictures with her and Adam after our son went to bed. I could tell Andrew missed me, as he wanted me to dry him off and read to him each night after Adam finished the bath. Nightime routine was usually with Adam and I, but Mommy did the bathing, changing, reading and leading prayers while Dad held Lucy. Prayers got harder, as I got more emotional each night. Right before Drew went to bed that night, I remember sitting in the family room and running to the bathroom. My stomach felt all messed up and gassy. I had diarrhea once, then twice - the second one looking a little orange. I felt my pulse racing, and couldn't control it with my pacemaker (oh yeah, I have a heart condition too - thankfully that's stable!). I called my mom and she said I should go to Northwestern ER, as we could potentially get into Dr. Gonsalves sooner, or at least get a consult on why things were as they were after nearly 1 week of steroids already. I figured that would be a good idea, and we planned to go the next morning - Tuesday 9/20.
I finished up in the bathroom and helped Adam out with Drew's bath - more sitting on the floor and rocking, while watching Lucy and waving at Drew in the tub. I was able to get up and change Drew, and we read a short story - mommy sped read and skipped pages, and we said short, short prayers - I had to run to the bathroom. I had Adam go and get me something to collect a sample this time. I ran to the bathroom, got the sample, took one look and realized it was all bloody. I ran down the stairs in sobs; I was so scared.
I asked Adam what I should do; I didn't want to make a big deal about things, but I was really getting concerned and felt totally out of control of my body. And this was all on a clear liquid diet and with steroids - I didn't get it! He said to do what I wanted, but I could tell he was irritated - things were getting overwhelming. It was first time I felt really alone. I wanted things to be normal. I didn't want my husband having to take care of our kids - especially a 4 month old still not sleeping through the night - all by himself, and trying to balance work and helping me (I knew he worried about me). I didn't want my parents to have to take me everywhere and be the mom to my kids I couldn't be. So many people offered to help and were praying, and making my family meals, but it wasn't the same. I called my cousin Katie and asked her what to do. She thought going to the ER was a good idea as well. I figured she could be my deciding factor, and I told Adam we needed to go. We called my parents to come get the kids, so we could head downtown Chicago to get to Northwestern (NWMH). We packed up the dog so our wonderful dog sitter Kathleen could come get him, and we packed up the kids. Drew and Lucy seemed to be doing ok with the transition. Drew did well as he hadn't gone to sleep and roamed around the kitchen in his cute PJs. I remember just looking at them both before I left, not knowing what was going to happen. I already missed them terribly, even with them being in the same room. I felt awful having to disrupt everyone's life, but I knew we had to go to the ER. Adam and I packed our bags and our medical records that we were able to get so far and left at 8:30pm. It took 1.5 hours to get there; I-55 was under construction as usual.
Once in the ER, we waited over 3.5 hours. It was a Monday night in the NWMH ER. Not a nice place to be. People were sick - one guy laid on the floor and vomited all over things. I honestly thought I was going to get sicker just in the waiting room. The triage nurse took down all my info and said she was sure I would be admitted. It was the first time I broke down in tears in front of someone besides Adam. We waited, and finally at 1:30am, we got an ER room. We spent 5 hours in the ER, getting IVs and dilaudid to control the cramps. I was miserable, but couldn't sleep even with all the dilaudid this time. I had so much in me - steroids, dilaudid, etc. It took a few hours and some heavy dilaudid before the cramps subsided. We finally saw the ER doctor around 5am, and she asked if I was just trying to fast track to Dr. Gonsalves or if I was really in pain and needed to be admitted for pain management. At first, earlier that evening, before the bloody sample, I thought fast track. Now, I was in such incredible pain, I knew I needed help. I told her it was for pain management, and felt I really was being honest. The med student, doctors and nurses were very compassionate, and they all knew what eosinophils were. Adam and I had as much paperwork and copies of the scans from Rush Copley and Dreyer, so we were able to help the doctors with information and samples. At 6:30 am, on September 20th, I was admitted to Northwestern - it was Tuesday morning, the 3 week mark since this whole thing started. I still thought I had just had a bad pizza lunch! Every email I got from Connie's made me feel strange inside; I still love their pizza but don't think I will ever be able to go back.
Tuesday, 9/20, was a whirlwind. We met Dr. Amit Patel within less than an hour of admittance on their usual rounds. He brought his team - a 4 year med-student Mike who was awesome, and 2 other students. They were the internal medicine team that had my case. They would be consulting with the GI team, and placing all the charge orders. Adam and I tried to get a bit of sleep after the left, but I couldn't. I was too uncomfortable. I got more dilaudid - this time 1mg every 2 hours, and I was getting more loopy, but I wanted to hear what everyone was saying. I remember the GI team came in next - Dr. Bartel?, the head of GI at NWMH came in with a slew of GI doctors and students. Dr. B managed the whole eosinophil research group, including the nutritionists and Dr. Gonsalves. I was pretty wowed we got that attention so quickly. His 4th year med-student Ryan was a standout as well. Dr. B said they were intrigued by my case. Most people they see have EoE or Eosinophilic Esophogitis, but mine is in the esophagus, stomach and small bowel (making it an EoG diagnosis). I have eosinophils in my blood, but not a lot - it's moved to my tissue which is why it's seen in heavy volume in these three areas of my GI tract. It also would explain why the acid-reflux stuff wasn't helping - as it really wasn't heavily involved in my esophogus - more in my small bowel, where all the pain was. I really wasn't having any symptoms but the massive abdominal pain, the bleeding from the hemmoroids, and now the diarrhea. I have no know food allergies - or any allergies for that matter. I get a little itchy eyed in the summer and a bit of sore sinuses, but nothing I need to take for it except maybe a Claritin on an annoying day. I also don't feel well after milk, ice cream, yogurt and other dairy products, and try to keep them out of my diet (but I figured this was just lactose intolerance).
Dr. B said that they would take on my case, and wanted copies of my medical records - especially the slides from the biopsies. He said he would make sure I got better with new treatment and got back to solid foods before I left. I felt excited. Ryan, his student, peeked back in after the GI team left, and said "He's the head honcho here" and they were really interested in using me for their research. I felt good about that; I was getting attention quickly by everyone here and meeting the people we wanted to see.
I was continued on IV and my steroids were increased higher. Adam and I started making calls to Rush and Dreyer to get all my records moved over (we turned it around in less than 24 hours with the help of all the staff - I was so happy and NWMH was floored we got it to them so quickly). Hey, I was sick and didn't want any more time wasted. If nothing else, it gave me something to take my mind off how I felt. I stayed NPO on Monday, and a second CT scan - this time of the small bowel - was ordered. I was afraid of the extra radiation, but the GI team wanted to ensure there was no other obstruction in the GI tract (the other scan showed everything was ok up to the small bowel). I continued on dilaudid during the day, and medical records were reviewed. They confirmed it was definitely EoG, and agreed that we were right in not doing the gall bladder surgery. I may need it out someday, but it wasn't causing these issues. Praise God for an answer to that prayer!
Dr. Patel called me that day and asked if I would be willing to meet with a 2nd year med student, so he could use me as a practice patient. I agreed, and got to meet with Kalvin for a few hours. My brother David came in to see me, as he lives downtown Chicago, and Adam and David happily contributed to all of my medical history. So helpful. Kalvin was really kind, and very nervous. I told him when he did my research study write-up, to write "32-year-old beautiful, blond female complaining of abdominal cramps" to start off the study. He looked at me funny, and I told him if he wanted to get people to read it, that was a good way to start. It made him laugh. I figured as long as I was there, I might as well be nice to people, cheer them up, and help where I could to help spread the understanding of this disease. It was obvious we were all learning together.
After Kalvin's 2-hour exam (during which he referred back to his how-to guide regularly, which I thought was cute... I know, I'm getting old), I wished him the best and took a bit of a rest when Adam and Dave left. Adam took off work all week, coming up to see me each day, and going over to my parents each night for dinner and a visit with the kids. I was fortunate to g-chat with the kids daily to see them, but it's just not the same. Monday evening around 6pm, the techs came to take me to the CT scan. I had to down 3 jugs of barium. Flashbacks of college. It's much easier for heart testing; you really have to be strong to get through the GI tests - cleansing, barium, holy geez. I had to drink 1 bottle every 15 minutes. I tried to preoccupy myself with the magazine, and I got one jug down without too much issue - it was pretty awful and more than I had drank in a long time. The second jug was miserable. My abdominal cramps started hurting, and by the end of the bottle, I was in tears and ready to vomit. I cried when the tech came in; she said just to stop and we'd do what we could. Thankfully, the test was done without the 3rd jug and the test came back negative for any other obstructions. Unfortunately, the cramps continued - and big time. I suffered all through the night, getting 2mg of dilaudid every 2 hours. The steroids and cramping kept me up all night. I had clear liquids (broth, italian ice, jello and grape juice) for dinner, but couldn't get much down as the barium had really bothered me - my stomach churned and my abdominal cramps were as if I had my insides being twisted all across my baby bulge.
On Wednesday morning, I still had no relief. I had clear liquids for breakfast (broth, italian ice, jello and grape juice, and tea). The pain got worse. More steroids, more dilaudid. I was my bottoming out - I had so many steroids and so much dilaudid and STILL so much pain. I had to go to the bathroom (pee) every 30 minutes with the IV fluids, but by 11am, I couldn't even walk to the bathroom. Adam and the nurse couldn't hold me up; I was dead weight and I couldn't do anything about it. I could feel my legs collapse and had to use a bedpan - which of course, ended up making a mess as my bladder was full. I felt so helpless, sitting in the chair completely drugged, having my husband change my clothes and the PCT make up a new bed. It was then that I really started to realize how serious this thing was and how humiliated I was.
At lunch Wednesday, I was totally drugged up. They brought the same liquid diet I had for breakfast, and Adam poured the broth into a cup so I didn't have to use a spoon. I started to sip it, when my nurse walked in and took it out of my hands. I nearly cried. She shook her head and said absolutely no broth. I actually got really defensive and wanted to know who changed it and why we weren't informed of the change (we actually got excellent updates - the med students called almost hourly with new information; I think things were just getting to be too much and I flipped). She said it was a note added by the nutritionist. The nutritionist’s concern was the protein in the broths (and all nutritional drinks) was a potential allergen and continuing to worsen my condition. Adam and I hoped we could meet the nutritionists soon, as diet plays such an integral role in this disease and they were now clearly part of what would happen to my diet in the hospital.
So, we were down to jello, grape juice, italian ice, and tea. I thought I was going to wither away if this kept up. A few hours went by, and I noticed my cramps went away for the first time at the hospital. I didn't ask for more dilaudid, and just kept up at the brothless clear liquid diet. The meal staff kept bringing me everything in bulk - multiple jellos, italian ice, and juice cans; I think they felt bad this was all I could have. I still had no appetite but I didn't have any trouble drinking everything.
After a few hours, two nutritionists walked in, one who was head of EoE nutrition and one that did hospital rounds. They introduced themselves saying they had also been on this case, changed my food order, and were now bringing me a “care package.” The package consisted of all hypoallergenic powders and drinks, which they wanted me to try in the hospital. With EoG, there are really 2 treatment options – steroid treatments to fight the allergens (you can eat/drink anything but have to always be on steroids – and that approach hasn’t been working for me), and/or control with diet. Because skin allergy tests work so rarely and steroids have long term effects, the diet is pushed hard to manage the disease. They stated with the eosinophils being in 3 areas, I most likely had several severe allergies and they could be something like protein that is in lots of even the simplest of foods or liquids. Or it could be that I was so inflamed during this episode of EoG, that even the slightest thing my GI tract was asked to do - like have to break down a protein - would give it severe pain.
There are only a handful of cases with all 3 areas impacted like mine, so they highly recommended trying the diet samples in the hospital and reworking the GI team’s plan. Essentially the diet is like we do for babies. Start out several weeks on hypoallergenic formula (made with amino acids vs. proteins so your body doesn't have to break them down), the hypoallergenic nutrition drinks, and the sugary liquid diet I’ve been on (jello, 1 type of juice, italian ice, etc). After 6 weeks of diet and steroids, clean out the system of all eosinophils and get another scope to confirm the disease is in remission with biopsies. Then, one by one, start introducing foods to your system to rule out allergens. It usually takes 6-12 months to get through the diet, and the formula becomes a staple to compensate for what you can’t have in nutrients and calories or whenever you relapse with an allergy. The only thing the formula and drinks lack is potassium and salt, so I’d have to drink at least 1 gatorade a day and eat plain table salt – about 1 tsp. a day. They said it’s like a tequila shot without the tequila and the lime – interesting analogy, but not super appealing I thought. :) I thought of my son, who loves when Grandpa grinds up salt and pepper on his plate. Drew would lick his hand, rub the plate, and lick it off. If only to have the taste buds of a toddler!
There are only a handful of cases with all 3 areas impacted like mine, so they highly recommended trying the diet samples in the hospital and reworking the GI team’s plan. Essentially the diet is like we do for babies. Start out several weeks on hypoallergenic formula (made with amino acids vs. proteins so your body doesn't have to break them down), the hypoallergenic nutrition drinks, and the sugary liquid diet I’ve been on (jello, 1 type of juice, italian ice, etc). After 6 weeks of diet and steroids, clean out the system of all eosinophils and get another scope to confirm the disease is in remission with biopsies. Then, one by one, start introducing foods to your system to rule out allergens. It usually takes 6-12 months to get through the diet, and the formula becomes a staple to compensate for what you can’t have in nutrients and calories or whenever you relapse with an allergy. The only thing the formula and drinks lack is potassium and salt, so I’d have to drink at least 1 gatorade a day and eat plain table salt – about 1 tsp. a day. They said it’s like a tequila shot without the tequila and the lime – interesting analogy, but not super appealing I thought. :) I thought of my son, who loves when Grandpa grinds up salt and pepper on his plate. Drew would lick his hand, rub the plate, and lick it off. If only to have the taste buds of a toddler!
When we discussed my issues with the nutrition drinks (Ensure or the Resource Breeze) and the liquid diet, they confirmed that whey protein and some milk bases were in things I was trying, and most likely, I was re-aggravating my symptoms each time I had even the liquids. It was nice to hear confirmation of the pain and what I was feeling was very typical from the little I was digesting! They mentioned that in Illinois, there was a law that insurance companies would provide these hypoallergenic drinks free of charge to all IL residents with this illness (it is a prescription). The state said they would, if it was given via feeding tubes. NWMH fought the law, and now Illinois insurance plans pay for these special formulas for all eosinophil diagnosed patients. And I thought baby formula was expensive! One can a day, at $40+ a can - that's $15K a year out of pocket if insurance didn't cover it.
It's amazing to think I was asymptomatic until a work lunch one day, and all this transpired in 3 weeks. While the diet makes sense and is very logical, Wednesday night (9/21) was the first time the reality of the illness started to sink in. Formula and liquids for 6 weeks, another scope, the start of introducing one little food at a time – starting with the simplest, lots of dr. visits on how to manage ingested allergens with steroids, etc. and so many questions. Visions of cake, chicken, steak, and holiday meals flashed before my eyes. However, I know that this is the right thing to do, and it is really necessary to keep the pain away and manage this illness. You can’t die from it, and while it may be truly life altering from a diet perspective, things will be ok. Absolute worst case is you are allergic to everything and drink formula the rest of your life, and I know there are people much worse off. I’m sure I will cry at Christmastime if I can’t eat all the Willett family cookies, and milk the sympathy for all its worth. My brother David, a three year cancer survivor who also gets treated at Northwestern, has already told me I cannot have my stem cells back, just in case I was wondering. We joked that I was fighting him for the best research case at Northwestern.
Wednesday night, the food service brought up dinner, with my usual menu (less the broth). I’d been pain free since 11:15am, and even walked the halls with Adam. The food lady looked at my tray, looked at me, then kind-of grunted “enjoy your dinner”. I replied “Thanks!” enthusiastically. She probably thought I was off my rocker, but when you know the pain you have from anything else, Jell-O and juice and Italian ice hasn’t ever looked better and it fills me up. I don’t have an appetite and can get all my liquids in pain-free right now. Thursday, I would start formula (Adam went to buy me Crystal Lite to mix it with) and the boxed drinks. I guessed it couldn't be worse than the barium, right? However, I was dreading the smell and texture, as I knew what Lucy's formula was like! Wednesday went fine, and I was hoping to be on formula Thursday and released by Friday.
Thursday morning, 9/22, was my dad's birthday. I felt bad missing his birthday, and knowing they were caring for the kids for the 3rd week in a row daily. I know they enjoy it, but it's still a lot of work morning, noon and night with 2 kids under 2. Adam came up to see me as he had every day, and I tried some of the Splash juice boxes (they were terrible) and then some of the formula (which wasn't good, but it was drinkable - especially the EleCare Vanilla). I worked with Apria Healthcare to get my formula order ready for when I was released. I took oral steroids for the first time, stayed on the IV, walked the halls with Adam (about 4 laps), and was over 24 hours pain free with the brothless diet. I even got down 22 oz of formula; I was so proud of myself! I went to bed that night, so optimistic.
Friday, 9/23, I felt great again. I continued to ramp up on formula, took a shower, did 10 laps around the hospital floor, watched TV, worked on a few things for work, and just really looked to pass the time. I knew I was ready to go home! The doctors agreed they wanted to keep me through to Saturday, as they took my IV off for the first time Friday and allowed me to get nutrition via the formula and gatorade. I was excited to be able to move around the room without my "leash". Around evening, I started to feel really nauseous, then my stomach started to feel really uneasy and my sinuses throbbed. The next 12 hours were a nightmare of diarrhea, acid reflux and horrible sinus pain. I cried. I had the nurse remove the flowers from my friend Vicki from my room, just in case. I lost all of my nutrients (the miralax I was taking 2x a day to "get things moving" finally kicked in full force, and I was in the bathroom every 1/2 hour). My stomach was so gassy, I looked like I was 6 months pregnant and it felt like I had done a colonscopy prep. I was miserable, and knew I would be hooked up to the IVs again. At midnight, I was put back on IV to stay hydrated. I cried some more. I had gotten 44 oz of formula down that day, and I ended up a mess. I wouldn't be going home Saturday. I was up all night feeling ill.
Saturday morning (9/24) came, and I was able to get my prednisone down with some grape juice (that was the one fruit juice I could drink - I had to pick one; the others will have to be tested with the diet). It took a lot to get down the formula this time, as I felt so gassy and diarrhea was sure to follow. Stupid miralax; I should have known getting it 2x a day for 4 days with no results was going to have some consequences. It really was like a colonscopy prep; I kid you not. In between runs to the bathroom, IV in tow, I got on the phone with Apria Healthcare to see if I could get some more formula. It seemed strange that the hospital wanted me on this diet, but I couldn't get the formula diet anywhere. I knew I would run out by about noon, so I wanted to ensure I could get some to my house. It took about an hour of coordination, and Adam was able to drive to a facility and get some. I stayed on the IV all day, and continued to use the bathroom about every hour, providing plenty of samples for testing :) The doctors wanted to continue to ensure there were no bacterium or parasites as in the previous testing. I was then transported up a few flights at NWMH to be closer to my doctors; I know, the highlights of my days are really exciting! I wasn't in a good mood. Adam did some shopping and picked up my formula, and gave everything to my parents who made the trip downtown to see me today. It was nice to finally see my parents. I g-chatted with the kids twice; it's still not the same, but it's amazing how much they've changed - especially Lucy - in the last few weeks. I can't believe it'll be 4 weeks in 4 days since this whole thing started. I managed to drink 36 oz of formula today. The new stuff was all unflavored, and I really struggled to drink it. I knew I had to call Apria ASAP to get the vanilla. My stomach churned. I'll just need time to build up to the amount of a normal person; I haven't eaten in nearly 4 weeks - you can't go from under just a few hundred calories to a couple thousand in 2 days. My brother also came to visit tonight, and after so many trips to the bathroom, I told my parents and brother to call it a night. I was grateful to have visitors - it helped the day pass; and I was glad that Adam got to spend the day with the kids. Drew was super excited to see his daddy, and apparently ran around the house calling "momma!" looking for me when he got home.*sigh*
And so here I am, at 7pm on Saturday night, blogging this entire story, drinking a cup of tea and looking out the window at NWMH. I don't know what the next few weeks/months/year will hold, but I know life will never be the same from this adventure. Eosinophilic Gastroenteritis (EoG) is a disease that has truly turned my world upside down in just under 4 weeks... and it all started with what I thought was a bad lunch. I never guessed that food would be a thing of the past for at least 6-12 weeks, I would live on formula and gatorade, and I would have to relearn what foods I could eat to avoid a relapse. My Christmas gift this year will be able to try some of my first foods into my diet.
As I continue to learn about the disease and begin life-altering treatments, I wanted to document this journey - not only for me, but for others who are struggling to find a diagnosis to their GI issues or struggling to live with eosinophilic diseases. Deep down, I feel I will become an activist for this disease, as it has been a huge change for me in the last few weeks (and many stories are worse and cause more heartache than mine). Knowing how many kids are severely allergic to foods, that need tubes to get their formula, that look ok on the outside but are crippled in their GI tract, that have to go through so many scopes and allergy testing and horrible pain - things could be so much worse. I would hate to see my kids go through what I just went through. I have faith that I'll be back to a full diet - less some serious allergy foods - in a year, and it'll probably be a huge transition to start eating food again, just as it is now to stop and use the full-formula diet. EoG is not something I'll die of and there are treatments unique to each person. It'll be a challenging year, but I know the alternative is pain and it's not pretty. It's motivating to move forward.
The last few weeks have strengthened my faith in God. It seems the last several years of medical issues with our family has really challenged my faith and allowed me to trust in the Lord. It doesn't mean I don't doubt, or get scared, or cry, but it means I pray and look to God to help me. And I truly belief that He has been very present in these last 25 days. I have been tested and brought to my lowest, most humiliated self; but I feel God surrounded me with tons of angels to help me through it.
- I know this disease can take years to diagnose - my doctor found it in 2 weeks from when my pain started.
- I avoided gall bladder surgery that wouldn't have fixed my disease, by getting us the test results hours before surgery.
- One of the top specialists in EoG is right here in the greater Chicago area, and we were able to get to them with fairly little effort.
- The teams at NWMH were amazing, and learned as much from me as I did from them.
- The medical records were turned around from everywhere in less than 24 hours, to help NWMH.
- My parents cared for me and my kids - day, night, anytime we needed.
- My brother came to visit.
- My sister and aunt called.
- Tons of friends and family emailed and sent messages via Facebook during each day of my journey.
- My cousin Dr. Katie and I reconnected and she helped be a sound advisor and truly close friend during this difficult time.
- Fr. Mark and Fr. David from St. Mary's visited me in the hospital.
- Our friend and dogwalker Kathleen took care of our baby Reeses (who I'm sure will be distraught coming home, and leaving his Dachshund friends) and made us meals
- The St. Mary's choir, cantors, and my beloved choir director Cherie led a huge prayer chain and helped coordinate countless meals for my family.
- And of course, my loving husband was by my side every day, taking time off work and from the kids to listen, learn and help care for me any way I needed. He was a good choice and is my best friend; we celebrate our 8 year anniversary (14 years together total) on Tuesday.
I think there are definitely areas in the story that are sad, shocking, and even for me - just a hard new reality to face in such a short time. In a few weeks, I'm sure drinking formula will be a second nature and it'll be strange in 6-12 weeks actually eating something again for the first time and introducing new foods over the course of a whole year. Allergy testing, scopes, nutrition label reading, and calorie counting will all be a huge part of my future. It's a chronic disease, but there is hope with research to find a cure.
So, hug your kids, thank everyone when they help, be angels for others - as there will be time you will need them to be angels for you, thank God for everything, look at the positives and laugh, and enjoy every bite of food you take. Life can change really fast.
Welcome to my journey.
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