Stories from our Inflammatory Bowel Disease Patients and Families

Kim Cook’s Story

My name is Kim Cook. My husband and I live in Morristown, TN. We have 3 children (19, 15, and 13). Our middle child was diagnosed with Crohn’s Disease at age 10. She was in pretty bad shape and was hospitalized for 30 days when first diagnosed. Her first two years were very rough and we were in and out of the hospital several times. Her doctors have found some medicines that have been a wonderful help and she is now very active and healthy.

I was fortunate to make some new friends while she was in the hospital. They were the moms of other Crohn’s patients. Having someone that I could talk to about this crazy new disease was a huge blessing. I heard things that were scary and things that gave me great encouragement. More than anything, I did not feel alone.

I want others to have the same kind of help. There is so much information to process that it is very overwhelming. Having someone listen to me and answer some basic questions was amazing. They couldn’t SOLVE her problems, but together we encouraged each other. I learned from them and am willing to help any way that I can.

Jillian’s Story

Jillian was a normal 7 year old who enjoyed soccer, swimming, vacations with her family and school. Around the end of October 2008 she began to experience periods of diarrhea and belly pain. She went to the pediatrician who ordered some labs which came back normal. By February 2009 she was always tired and had complaints of joint pain in addition to belly pain. She was barely eating and had lost a few pounds. Although a few pounds is not much, for a young child it is anything but normal. After doing some research, I had a strong suspicion she might be suffering from either Celiac or Crohn’s disease. We then scheduled an appointment with Dr. Alexandra Eidelwein who saw her in March 2009 and placed her on an antibiotic, ordered additional blood work and a stool sample along with a colonoscopy and an endoscopy.

The day after Jillian turned 8 (April 2009) she underwent the colonoscopy and endoscopy and was diagnosed with Crohn’s. She was admitted to the hospital for a week and placed on “gut rest.” We were then given a bunch of information and needed to decide what treatment plan was the right one for her. While I thought she might have Crohn’s, I certainly wasn’t prepared for the treatment of this disease. Because Jillian had Crohn’s from her esophagus and throughout her digestive tract, Remicade seemed to be the only viable option, so she was started on the infusions in conjunction with the steroids.

2009 was a very tough year to explain to an 8 year old that she needed to have blood drawn and infusions every 8 weeks. All she wanted to do was be a “normal” kid and couldn’t understand why this happened to her. What was even more frustrating was that we didn’t know any one else who had a child with Crohn’s. Eventually we met another girl and that friendship has been so beneficial to Jillian, knowing she is not the only child who suffers from this disease.

Today, Jillian continues with her infusions, labs, and doctor’s visits and also still enjoys swimming and soccer. This has become part of her routine and we have learned to deal with the disease. I continue to pray that there will be better treatments developed, especially for children with Crohn’s and I hope to help other families of newly diagnosed children with this disease since it is so very important to have someone in a similar situation to offer support.

Kim Guinn’s Story

My son’s Crohns story began in May 2010. Upon returning from his 8th grade graduation trip to Washington D.C., Alex, then age 14, came home very ill and experienced high fever, headaches and non-bloody diarrhea. Twenty-four hours later, Alex was in an emergency room having blood work and a spinal tap done. Although his spinal tap was clear, we were advised to follow-up with his pediatrician because of elevated liver enzymes. Three days later, we did indeed return to the pediatrician’s office. His pediatrician was sure that Alex had come into contact with a virus while on his trip to Washington and wanted us to ride the virus out. I concurred as a mother and a nurse.

A week later, Alex remained very ill. His fever could not be controlled with Motrin or Tylenol. I remember vividly having to change his bed linens from his nightly perspiration each morning before leaving for work and dosing him up with over-the-counter meds. The sheets were saturated from his sweat! He became so short of breath and tachycardic (elevated heart rate) that he was unable to walk up a flight of steps at our home. We made a second trip to the emergency room where they found him weak and dehydrated. After IV fluids and more labs, Alex was sent home to follow-up with his pediatrician.

Ten days from his initial illness, we returned to his pediatrician. He was no better. His fever had remained 102-105 degrees. It was then that the pediatrician decided to consult with an infectious disease specialist. After an intense and thorough interview /exam by the infectious disease specialist, Alex and I were informed of the “possible” causes of his illness. The physician was very concerned about his health and in an effort to rule things out – Salmonella, chest tumor, Epstein Barr Virus, Mononucleosis, and Cancer- Alex was ordered a chest x-ray, additional labs and provided a stool specimen before he was sent back home.

On our arrival home, I immediately received a phone call from the infectious disease specialist who informed us that the x-ray was clear of tumors but that Alex’s stool specimen contained blood and was almost certain that his illness was the result of Salmonella, but wouldn’t be for sure until a stool culture result returned. There really wasn’t anything that could be done at this point so we decided to ride the storm until a final diagnosis could be made. As a nurse, I concurred.

Three weeks into Alex’s illness he awoke for the first time without a fever! Miraculously his energy level returned and he was back to normal. In the following days the infectious disease specialist called to check on Alex. His stool culture returned completely normal and his illness was diagnosed as a rare unknown virus. Alex was back among the living!

Several months later, in October 2010 to be exact, Alex called me into the bathroom. He wanted to show me blood that he just wiped while on the toilet. As a nurse I was very familiar with rectal bleeding and this in no shape or quantity was the blood I was familiar with as being problematic. I questioned him if he had any external hemorrhoids. As a teenager, he certainly was too prideful to have me look! So, I just chalked it up to a hemorrhoid and told him to let me check his stool the next time he went to the bathroom.

A couple of days later, Alex again complained of wiping blood while on the toilet. These were only small spots of blood on the toilet paper and no apparent signs of bloody stool or apparent blood in the toilet water. However, I scheduled an office visit with his pediatrician who decided since he had had problems with blood in his stool back in May/June that she would send him to a GI specialist.

An appointment was scheduled to see the GI for Kids nurse practioner (NP) the following week. I had a previous work appointment that day and asked that my husband take Alex to the GI office for a “check-up”. I remember telling him that it wasn’t a big deal and that he should take his golf clubs and they could have a golf outing after their appointment. But that was just wishful thinking! Alex was seen by the NP who immediately called Dr. Al-Tawil into the room. Dir Al-Tawil immediately recognized Alex as having the “look” of someone with Crohns. He tried to explain what was going on with Alex to my husband and told him that Alex needed to be admitted to the hospital immediately. Back at my work, my cell phone was ringing off the hook! I dare not interrupt my meeting to answer my husband’s call. He was just going to tell me that he and Alex were on the golf course anyway.

After my meeting was adjourned my phone “buzzed” and this time I answered it. My husband was screaming on the other end of the phone and was telling me that they were admitting Alex to the hospital with a diagnosis of probable Crohns. I was shocked! Crohns was never mentioned by any of the physicians we had encountered since May. How could this be Crohns? Alex never had any bloody diarrhea! No abdominal pain! There was no way my son had Crohns! The physician had to be wrong!

I immediately joined Alex and my husband at the hospital and was later greeted by Dr. Al-Tawil. He informed me of the necessary bowel prep that Alex would have to undergo that night in order to have the colonoscopy and EGD that next morning. Indeed that next morning we walked alongside Alex’s stretcher as they rolled him into the surgery area. Shortly later, Dr. Al-Tawil appeared in the recovery waiting room. I remember looking down at his hands and noticed a lot of paperwork. I knew then that something was wrong as my husband and I walked with him to a private conference area.

Dr. Al-Tawil showed my husband and I photos of Alex’s scope and informed us that Alex had “severe” Crohns. I remember asking “How can Alex have severe Crohns when he has only had spots of blood, no bloody diarrhea and no abdominal pain?”. “If this is severe why was it just found now?”The answer I received rocked my world. “They were looking for an infectious disease not an inflammatory disease” stated Dr. Al-Tawil. In all my years of nursing I never separated these two entities. There was no doubt about it Alex’s colon was severely inflamed. Alex would spend the next 9 days in the hospital with a PIC line for IV nutrition while his gut rested with no food, gum, water or ice chips. On the final day of his hospitalization, Alex began an IV infusion of Remicade. As a nurse I was unaware of this medication but I was at peace with the decision to start the infusion after speaking to a former patient of Dr. Al-Tawil who himself was a Remicade patient. This now adult patient credited Dr. Al-Tawil with saving his life and in turn I must admit that he has done so with my son as well.

The beautiful thing about this KidsFACT website is that you are never alone. Many of our board members have shared their child’s story with you much like I have shared Alex’s story. We each have different stories to tell about our experience with our child’s diagnosis of Crohns or colitis. Please feel free to call upon any of us if we can help you or your child in any way.

Olan’s Story…

May, 2010

We had a really good and normal school year, with Olan getting ready to finish 5th grade. Plans were already being made for summer break. Swimming, hiking, trips to Splash Country and a deposit had been made for his first Boy Scout Summer Camp. Everything seemed to be moving right along….until.

Olan had complained about his bottom hurting. We thought that with the hot weather that he had developed a heat rash. When over the counter medicines did not help we made an appointment with the pediatrician. He gave us a prescription for some ointment. When another week had gone by and the pain was even worse, we made another appointment with the doctor. This time when he examined Olan he noticed something right away and I could tell something wasn’t right. He told me that Olan had an abscess and then showed me the spot on his bottom. There were a couple of “holes” in the skin and a watery discharge. He then left the room to get supplies he needed. I had no idea what was happening. The area was cleaned and some gauze was put in place (for the discharge) and a prescription for an antibiotic (thinking there was an infection of some kind). He told us to come back in a couple of days. We returned to the doctor’s office as told and saw the nurse practitioner (the doctor had left for vacation). She looked at the area and told up she wanted us to go to the emergency room at Children’s Hospital.

What a shock…Olan had never had anything worse than a cold or sinus problem. And she was telling us to drive to Knoxville to the emergency room, and they would let them know we were on our way. We drove home first and told his dad what the nurse had said and we all got ready to go. Now we were all worried and still didn’t know what was going on and afraid of thinking about it. When we got there the doctor came in to examine Olan. She then told us that she wasn’t sure what it was and would refer us to other doctors, specialist, there at children’s. One doctor was a surgeon and the other was GI for Kids. This started our quest to find out what was going on. It was originally treated as an infection, with us going to the surgeon’s office and then to a doctor in Maryville about every week for them to check to see if the area was healing. No improvement. At some point during the visits, the “holes” on Olan’s bottom had become one large opening about 1 inch long. It was as if someone had cut a perfect line and opened the area up. The surgeon suggested that we check into Cincinnati’s Children’s Hospital, that she was out of ideas of what to do. We went to others doctors to see if they could help or have any ideas.

August, 2010

Back to school

September, 2010

We decided to go back to GI for Kids and talk to them about what had been happening over the past months. We once again saw Dr. Al-Tawil, and this time he said we needed to go ahead and do a colonoscopy and the possibility of Cohn’s Disease. We really didn’t know anything about Cohn’s, so we started looking on the internet for information. Everything we read was upsetting and difficult to understand. Olan didn’t have some of the symptoms they described and had only recently started losing weight, just the spot on his bottom.

October, 2010

The time for the colonoscopy came and I took off from work to help Olan with his day of prep. So worried about how he would deal with it. Stories from well meaning people did not help with the worry, grown-ups who could not go thru what I was asking a 10 year old to do. Olan was amazing, never complaining about what he had to do. We got up the next morning, my daughter was taking our other son to school, and we headed to Children’s Hospital. The whole time telling him that everything would be over by lunch and that we would stop on the way home anywhere he wanted. We got checked in and waited. Family was there with us, nobody wanting to think of what it could be. Then there was Dr. Al-Tawil calling us to a private room to give us the results. It is definitely Crohn’s was what he told us, and that he had sent off samples to be tested. Shock set in, the doctor was talking about the thing that we had not let ourselves think about. The nurse was trying to give us a packet of information about things we needed to do; information about the disease and Dr. Al-Tawil was telling us that Olan would be admitted to the hospital for at least a week if not more. The abscess was actually a tunnel called a fistula, caused by the Crohn’s. Everything was a daze, I was crying, saying that Olan was such a good boy, this couldn’t be happening. Sitting there with Wendell, grandparents and my sisters, with the world around me spinning, everything a blur. One thing I do remember is Dr. Al-Tawil telling us not to worry, everything would be ok now that we knew what we were dealing with and that he would take care of Olan just as he would his own child. They told us that we needed to be very calm and not to let Olan see us upset. He was back in the holding area, laying there still groggy. The first thing he asked was if he could get ready so that we could go home, and we had to tell him that he had to stay and was being admitted. Asking him if he remembered the doctor talking about Crohn’s and that they had found that was what he had, telling him that he had to be at the hospital for awhile so they could help him. Then they rolled him over to his room. Olan would be on total gut rest, the doctor told us. We had no idea what this meant. Olan would need to get a pic-line; we had no idea what this meant. We would need to talk about Remicade treatments and when they would be started, we had no idea what this meant.

Every day we learned something new. No food, drinks or even ice chips were allowed, that was gut rest. All of Olan’s needs would be provided thru his IV tube. We stayed with Olan everyday with Wendell only leaving late afternoon to pick up Garet from school. He would then take Garet back to school in the mornings and drive back to the hospital. If possible he would bring him down to spend some time with his brother, and on the weekend Garet came and spent the night. How hard it was to sit there and know that Olan couldn’t have anything to eat or drink. The guilt when you would get lunch or dinner, sneaking out of the room, to grab something as fast as we could, trying to never let him see us eating or drinking. He was so good about this and never complained though you could hear his stomach growling. The pic-line was put in, this was a stronger IV that could be left in for extended periods of time and worked better for what Olan needed. He was sedated for this. And his first Remicade treatment was given, one of the treatments for Crohn’s. We also found out that these treatments would be needed after we were released from the hospital. As for the abscess on Olan’s bottom, the abscess that had been with us for months with no signs of improvement? Two days after his Remicade treatment you could already see a remarkable change, and by the time we left the hospital (one week), it was 90% healed. On about the 4th day Olan was finally able to have something to drink, the next day some soft food and finally some regular food.

Finally, time to go home, after living at the hospital for a week. The picc-line had been removed. Prescriptions were written, visits from the dietician with do’s and don’ts about how and what Olan should be eating from now on and finally discharged.

So happy to be going home, but with a whole new set of worries. And guilt over what had happened. Was there something we could have done differently? Was there something we had done wrong?

November, 2010

Settled back in school and feeling much better. One day Olan mentioned that his hip was hurting. I thought that he had overdone it at school. More days went by and he still mentioned the pain in his hip and lower back. The doctor had told us that if anything came up to call and let them know. We decided to call and tell them about Olan’s problem. They wanted him to come in to the office. We both went with him thinking we would be in and out before lunch. We would be seeing Jackie for the appointment. She came in asked some questions, and check Olan. She said she would be right back and left the room. Five or ten minutes later she came back in and told us that we would need to take Olan over to the hospital, she had his admission papers ready and that as soon as they could they would be taking him down for an MRI. Her concern was that there was another abscess, fistula, tunneling its way thru like the one he had on his bottom. I saw Olan’s face drop with the news. This had never crossed our minds. If the MRI didn’t show anything we could go home. Once again we were in shock, once again being admitted to the hospital. They were ready for us and got us settled in a room. Right away they were there to take him down for the MRI. We were allowed to go and stay in the room with him. We had no idea about the procedure. They gave Olan headphones to wear with music playing and got him settled in the machine. We had two chairs near the front of the room. Then the noise started really loud, jack hammering noise. Finally over, they took us back to the room. In probably less than 30 minutes Dr. Al-Tawil was there. He came over as soon as he could to give us the results himself. No going home today, the MRI showed an infection in Olan’s back, probably from the Crohns. He told us that this was just a little bump in the road that he would take care of it and would be bringing in some other doctors for more information. There was an infectious disease doctor and an orthopedic doctor because the infection was in the bone. There was no way to get a sample of the infection because of the location close to the spine. The infectious disease doctor came up with a plan to fight any kind of infection that it could be. Another picc-line would have to be put in and antibiotics given on a regular schedule. With this done we settled back in to the hospital and to the schedule of antibiotics. Before we would be able to go home, we would need to be trained on administering the medicine at home thru the picc-line. This would be for six weeks at least. The nurses worked with us and got us trained. I remember that the hospital had put up a paper turkey on our floor for Thanksgiving; you could mark the feathers with things you were thankful for. Olan marked his feather that he was thankful for Dr. Al-Tawil. Finally after a week we were able to go home. We gave the medicine in the morning before school, this took 30 minutes. Another one after he got home from school, this time with two different antibiotics, taking one hour, then again at 11:00 at night, taking 30 minutes.

December 23, 2010

Finally the six weeks was over and it was time for another MRI to check to see if the infection was gone. Good news this time, just in time for Christmas. The picc-line was removed after Christmas.

2011

Back to school after Christmas break.

We have settled into a routine now, with treatments and medicine, a change in diet and how we eat.

Back to soccer games and finally getting to attend Boy Scout Camp in the summer.

And prayers every day for continued health and thankful for such a wonderful group of doctors and especially Dr. Al-Tawil for everything that he has done for Olan and our family.

Brad Freeman’s UC story

There are so many things to know about Ulcerative Colitis and Crohn’s. It’s so overwhelming at first. The first year is always the hardest, but you can get through it. Follow your treatment plan with love and you will slowly start to live a brighter, fuller life. It’s not the end of the world, but it certainly does feel like it. In the first couple of months of your ordeal, my one piece of advice would be, “Be Open Minded.”

Our daughter was diagnosed with moderate to severe UC a couple of months before her 4th birthday. It was absolute HELL! She was hospitalized twice, once for 9 days, and then 3 months later again for 3 days. I have learned how to listen, be calmer, be open minded, and follow what works. If things aren’t working for you don’t get discouraged. Move forward, and speak up. Don’t be afraid to call the doctor, and don’t fool yourself into thinking it will just go away, because it won’t. If you run from the disease it will chase you down and wreak havoc in your life, but if you tackle it, it will slowly give in, hopefully. You have to decide whether you want to win this fight. Embrace what works for your child and do not linger. It took about a year and a half to get our daughters UC completely under control, and she hasn’t had any real symptoms in over a year.

If you have a diagnosis then you are half way there. Embrace it, don’t run from it. Do what you have to do to get your child better, and living a fuller more complete life.

Our last visit to the office was to see Tywanna for Remicade one week ago. When Sydney’s dad came home from work he said, “So how did it go?”, and her words were, “It was amazing!” That makes us very happy!

One of the first things that I remember Dr. Al-Tawil saying to us was, “The good thing is that you are here”, and I thought to myself, “NO, that’s the worst part of it all!!” But he was right, and now he’s like family to us. So I just hope that you can make it easier on yourself and your child. We try to make the most of it now, and she doesn’t care, because she doesn’t want to be sick again.