Thursday, July 14, 2011

Mystery Diagnosis: Meckel's diverticulum and intussusception

I've been gone from the blog for a while, but boy, I have a good reason. The past week seems like a month. Most of you know why I've been absent, but I thought I'd better go ahead and document the story on the blog.  Just a warning, this is going to be long.

My youngest son, Ryan, has had a rough couple of months. He started having stomach cramps on Monday, May 16. Every day, at least once, but sometimes twice; he would lay on the floor moaning and groaning that his stomach hurt. Nothing helped it. When it quit hurting after 30 minutes or an hour, he would get up and go ride his bike, or go for a run, or whatever else he felt like doing...because he felt completely fine when his stomach wasn't hurting. I was baffled. I didn't know how to help him. I offered multiple over-the-counter products, but nothing ever helped. He didn't seem sick and had no other symptoms. Trust me...I quizzed him about what was going on in the bathroom almost daily.  I couldn't find a connection to any foods he was eating, and the stomach spasms were getting rather alarming.

After exactly one month, when we were finally done with all the senior party/graduation business for our oldest son, the girls' dance recital, college orientation, our 25th anniversary trip, and Ryan's week-long trip to Student Life Camp in Colorado, I took him to the doctor. Yes, I win "Mother of the Year" for getting my son to a doctor in a timely manner. But I've forgiven myself, so moving on...we saw a P.A. who ordered an x-ray of his abdomen. I got a call later in the afternoon telling me that Ryan was constipated. I was surprised, considering that he had communicated a different story almost every day for the prior 3-4 weeks. Regardless, x-rays don't lie, so we started 7 days of laxatives as instructed by the doctor.

After 7 days of laxatives, Ryan vomited the next day when his stomach was hurting. He was completely cleared out, but he had continued to have stomach cramps during the 7 days of laxatives. I was even more alarmed than before, because vomiting was a new symptom. He didn't vomit the next two days, but still had stomach cramps. By this time, it is the fourth weekend in June and my husband left for a work trip to South America. On Saturday, Ryan vomited and on Sunday he vomited a LOT of times. I took him to the emergency room in a bit of a panic Sunday afternoon, June 26. His stomach had been hurting daily for SIX WEEKS! The ER doctors were busy, but did blood work and assured me that he must have a flu bug. His blood work was completely normal, so they sent us home and Ryan continued to vomit through the night, but was better by Monday morning. I took him to another doctor, who is a family friend, on Tuesday morning. She ran bloodwork and did another x-ray. Everything checked out great. We had no idea what was wrong with him.

For the next week he had stomach cramps daily, but no vomiting. He thought they might be getting a bit less intense, so we were hopeful that things were going to improve ANY MINUTE, for Pete's sake!
We traveled to Missouri to celebrate July 4th weekend and had a great time with the relatives. Ryan swam and played, and of course, had stomach cramps at least once a day for about an hour.

We came home from Missouri the night of July 4th and were looking forward to leaving on a vacation to Wyoming on Friday, July 8th. We had some appointments and haircuts, etc. on Tuesday and Wednesday. Ellyn called me around 11:30, as I finished an appointment with my dermatologist on Wednesday and said Ryan had vomited a few times and seemed worse than usual. She told me I needed to get home. I called our doctor/friend who told me to take him straight to Blank Children's Hospital emergency room. She didn't need to tell me twice.

As I drove Ryan to Des Moines, he laid in the back seat moaning and writhing in pain, vomiting every 5-10 minutes. I drove really fast, and imagined what I would say if I got stopped for speeding. I felt ready to burst into tears but knew I had to hold it together.

When we walked into the ER, Ryan started vomiting again right at the check-in desk...and that gets you a room really fast.

We were in the ER from 1:00 pm until after 11:00 pm. Fortunately, Byron works two blocks away and had been able to join us during the afternoon. During the first 4 hours in the ER, Ryan almost climbed the walls in agony. He literally moaned, writhed, rocked, paced, pulled his hair, etc. They had an iv going very quickly, but had to try three different pain meds through the iv before he got relief and could lay down and relax. He had an allergic reaction to morphine and had to have benedryl through the iv, which complicated things even more. They also did another x-ray and bloodwork, which came back normal. Once his pain was under control around 5:00, they decided to do CT scan. Ryan drank the contrast/cherry flavored drink for the CT scan, and then we waited for 3 hours. He was somewhat comfortable and had the attention of a lot of ER staff. They started talking about admitting him, because his pain was not able to be controlled well.

The CT scan came back showing something abnormal in his small intestine. I felt optimism for the first time in weeks. The ER doctor then called a pediatric surgeon. At 10:00 pm the surgeon decided to try a procedure that he thought might correct the problem the radiologist had seen on the CT scan. I'm not going to describe the procedure, but I will say that watching Ryan go through it was like watching someone give birth. It lasted about an hour and did NOT work. Ryan was then admitted.

Byron headed home to be with the other kids, who had been alone since noon. (Glad they aren't little anymore.) Ryan and I got to his hospital room around midnight. Wow, what an unbelievably looooong day it had been. I was exhausted and Ryan had been through hell. And I don't say that lightly.

The next morning (Thursday) we met with the surgeon who asked us to relay the whole story again...when the cramps started, other symptoms, what had transpired in the 7 weeks, every detail we could think of. He had talked with the radiologist who read the CT scan and he thought he knew what the problem was: a Meckel's diverticulum. (keep reading...I will describe what it is a bit later.)

Ryan spent Thursday in a hospital bed with iv fluids and pain meds, but did not have any stomach cramps. He could eat or drink NOTHING, in case of surgery. In the afternoon, he had something like dye put through his iv to work its way through his entire system. I don't know what it was called, but he went to nuclear radiology for the "dye imaging" which required him to lay still for 75 minutes. No problem, he fell asleep watching a movie.

His siblings visited and provided entertainment and a much needed distraction from hunger. Ryan hadn't eaten anything on Wednesday, since he'd been sick. He was feeling hungry by Thursday afternoon.
The surgeon was hoping the dye image would show the Meckel's diverticulum. He warned us ahead of time that it could be in Ryan's intestine, but not show up on the image. This dye image/test was a possible way of confirming it without cutting into Ryan to find out.

disclaimer: I am not a doctor, but I will try to explain the problem
 A Meckel's diverticulum is a remnant of the yolk sack/umbilical cord that is supposed to dissolve shortly after birth. In two percent of the population it doesn't dissolve. It usually makes itself known within months of birth, by causing bleeding and extreme pain in infants, due to the fact that it produces acid. (The intestines are non-acidic.) Very rarely, they go undetected if they do NOT produce acid. The surgeon quizzed me about Ryan as a newborn: did he cry a lot, did he have bloody diapers, was he premature. No, no, and no.  The dye image came back inconclusive for a Meckel's diverticulum. It didn't show anything wrong. Ryan was scheduled for exploratory surgery for first thing Friday morning. (The same Friday we were supposed to leave for Wyoming.) 
Ryan--looking relaxed as he heads for surgery
Ryan had surgery at 9:00 am and by 10:00 we learned that it was indeed a Mickel's diverticulum, with a major complication: intussusception. The Mickel's diverticulum would normally be like a 1-inch pocket in the small intestine wall. Ryan's had inverted, so it was sticking up into his intestine and causing things to catch on it as they passed through. As things caught on it, it began to telescope his small intestine into itself:  imagine reaching into the end of a tube sock and pulling to turn it wrong side out...that's what was showing up on the CT scan. It was the cause of Ryan's extreme pain--his small intestine was starting to turn wrong side out.

funny sidenote story--Throughout the 7 weeks of stomach cramps, Ryan would say that he thought he had a twisted gut. Sweet little sister Meggan told him he had a demon in his liver, something she picked up on some tv show called Untold Stories of the ER. The surgeon told them they were both right, only the demon wasn't in Ryan's liver, it was in the small intestine and he cut it out.

Ryan had two very small incisions and one a little larger, and he had the problem corrected and his appendix removed (preventative measure that is very common). They took pictures of his "guts", so we have been able to see the entire problem with our own eyes. We were elated to know that the diagnosis was correct and that the surgery fixed the problem!!! Meckel's diverticulum with intussusception in a 12 yr. old is considered rare, and we are so grateful that it was found and corrected.  The surgeon told us that he was planning to mention Ryan's case in his next lecture.
Ryan -- ready to go home
The doctor encouraged us to continue with our vacation plans and just leave a couple of days later. he gave us instructions for Ryan and his cell number in case of a problem. Ryan was dismissed at 2:00 on Saturday. We left for vacation at 7:30 Sunday morning. My brain was just a tiny bit fried. Being gone from home for 3-4 days prior to leaving had made it very difficult to get anything ready. I packed in a hurry, and we are now relaxing as a family in the beautiful Grand Tetons!

19 comments:

  1. Angie, You are a godsend....I feel so fortunate to have stumbled across your blog! We have been dealing with the same issues (except vomiting, although he does have reflux) with my 12-year-old son, Nick, for many weeks, and getting no answers except constipation. I would so appreciate hearing from you ASAP to know if your son also had increased stomach pain immediately after a bowel movement, rather than getting relief.
    I am going to have the doctors check him for this condition on Monday.
    Best,
    Leslie

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  2. That was not one of my son's symptoms. It is so difficult to watch your child in pain and not know how to help. I hope you get some answers soon.

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  3. Thanks so much for getting back to me so quickly.
    Your blog was really helpful!

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  4. Angie, I found your blog because a friend told me she watched a Mystery Diagnosis show about Meckel's Diverticulum. My 12 year old son Nick has been positively diagnosed through a nuclear medicine scan for a Meckel's. (Very interesting that 12 years old seems to be the common thread between your Ryan and Leslie Weller's Nick).

    Our problem is that even though its been diagnosed, NO ONE believes us about how painful it has been for my son! We are scheduled for a surgical consult next week which means surgery is then the week after. His Gastroenterologist who saw the Meckel's on a small bowel study Nick had done 2 years ago says Meckel's should not cause him this much pain. The thing is, my son has ALWAYS had problems with episodes of vomiting, nausea, intense intestinal pain and migraines and we have done countless tests to find the cause. Countless. And they have all been negative. I had to beg for a week for pain meds and they finally prescribed Tylenol with Codeine which didn't touch the pain. I begged for another week and they prescribed Percoset which we just tried last night. And it didn't help.

    I have to say we have gone to the E.R. twice with pain, nausea, vomiting but that was before it was diagnosed. They did see an area near the terminal ileum that looked odd so my poor son went through a colonoscopy only to have a normal result. I cannot begin to describe how panicked and desperate I am about my son's situation. He has missed over a MONTH of school now. After reading your blog and some other info about Meckel's turning gangrenous or having torsion I am going to take him back to the E.R. right now and insist on more tests. THANK YOU for posting Ryan's situation and I hope he's all better now!!

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    1. Christine, I was just reading about Ryan's story and came across your journey. While exploring treatments for my son Jake, I learned of a condition called "abdominal migraines" which a physician friend of mine is an expert in and cleared my son. Ask your son's MD about this or do some research. I hope all goes well and that all of our children feel better! Take care!

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  5. Thanks for your story. My son is 17 and we just found out that this what he has. it has been going on for 6 months with test after test and changing doctor just so we could get some anwsers.

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    1. Kore, glad to hear that you finally have a diagnosis for your son. Watching your child suffering and not finding answers is horrible! I would be very interested in speaking with you more about your son's experience. We had our surgical consult today and they are questioning the scan (even though it also shows up on his small bowel follow through). They want my son to try antidepressants first and then to schedule surgery in the summer.!! I want to scream!
      My email address is: christineinrio@Yahoo.com
      Just list Meckels diagnosis as the subject line. Look forward to hearing from you :-)
      P.S. Angie I hope you don't mind!

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  6. Hi... Very interesting read, glad your son is ok. My 3 yr old had the same thing exactly a month ago. He was vmitting, ha a bit of diarrhea, and was in a lot offffff pain. Finally on the 4th day he had blood from his rectum. We rushed to emergency for the 4th time and were transferred by ambulance to a specialist childrens hospital. Th took an x ray and decided to do an explorative surgery on feb 4th. Turns out he had a meckels diverticulum. They hve removed about 15cm of his small intestine and resected it. To top it all i was 39 weeks pregnant at the time. It was agonising. Seeing his tiny body in so many tubes..... Fter surgery he wanted to eat , but had to wait 5 days vefore he could. My 3 yr old was constantly begging..screaming for food..juice...biscuits...just one biscutis. The longest 5days of our lives. Anyway now he is home snd recovering... Wants to eat a lot more than he used to... Is that normal u think ? I just hope he doesnt have any problems later on".... Hope your son is ok now.... Will be helpful if you could let me know how his recovery went,..... Thanks a lot.

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    1. Hi, can you please tell me the type of complications they can have afterwards? My son had meckels as well and i worry all the time about possible complications later on in his life

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  7. My email id is vaishu28@gmail.com

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  8. my husband found your blog entry as he was looking for anything that would explain what our son was going through. I am happy to say that he was diagnosed and had surgery last week. He is much much better now than he was over the last few months. But, my poor adorable blessing had to go through hell because of Mekele's diverticulum and intersusception. There were multiple parallels in our story and yours - multiple doctor visits (even one prior ER trip in our case) all of which misdiagnosed as stomach flu and similar issues, the intermittency of his pains, and how he would be his happy self after the episode passes, the vacation plans (we were supposed to be starting a road trip the week he had his surgery). Our son is 6, and this thing apparently rarely presents itself in this way in kids older than 2 years old, our son has always been the most mellow, sweet kid you can ever imagine. He didn't present any symptoms till he was turning 6. In his case, the part of the intestine that telescoped had gotten completely necrotic and could have perforated at any time, leaking stuff from the intensities to the rest of his body .... so so lucky, it was caught before this happened.
    We are just thanking God and counting our blessings that this was caught on time. Your blog was a source of strength and hope, thank you. You are a very good writer, you described the issue very well.

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  9. We know your pain. My son spent over a year in and out of revolving ER door, many dr's visits and ridiculous conclusion-bleeding rectally due to contipation and excessive pushing. He was finally diagnosed by a surgeon requesting the appropriate test. This was somewhat by luck however as the appointment was set to correct esophycol ulcer ( now we know was caused by the meckel's ) which we were led to believe was also causing the rectal bleeding. Symptoms: anal blood loss, fainting, stomach cramps. He was 16 when he had his 1st pass out/ blood loss episode however he had been thought to have IBS since 14-15 yrs old. So, symptoms began showing up early but our medical professionals are not very astute in looking beyond minor ailments when they could be looking at the bigger picture.

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  10. My 4 yr. old son is a survivor of Meckel's diverticulum. He recently had emergency surgery on Jan. 22nd @ Vanderbilt Children's Hospital in Nashville, TN. The ruptered diverticulum caused a perforation in his small intestine. This caused bowel movements, blood, fluid, and infection to fill his entire abdomen. Needless to say, he was on borrowed time. We were in the hospital for 10 days because a drain tube was in place to pull all of the remaining fluids from his stomach. He was on heavy doses of antibiotics and wasn't able to eat til 8 days post op. He's still considered high risk for a post op abcess, but so far things are clear. This is a VERY SERIOUS condition. It's a congenital defect and only affects about 2% of the population, so it's often misdiagnosed. We had doctors saying it was viral, bacterial, inflammatory bowel disease, Crohn's, etc. They finally discovered it once a CT scan was performed. PARENTS: I cannot stress enough the importance of being persistent with your child's doctor. If your intuition tells you that something is wrong, it probably is. Insist on tests, especially the CT. Most doctors try to avoid doing one, but it's necessary to correctly diagnose this condition. My son is doing pretty well with his recovery. He's still very pale, despite having a blood transfusion pre-surgery. We go back to our surgeon on Feb. 14th and I hope we have good news then. PHYSICIANS AND MEDICAL PERSONNEL...PLEASE LOOK FOR THIS CONDITION IN YOUR PATIENTS. IT'S RARE, BUT IT DOES EXIST. CONSIDERING IT AS A POSSIBILITY COULD SAVE SOMEONE'S LIFE.

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    1. What's post op abcess? My son had Meckels as well and i was never really told if they can suffer from complications afterwards....so im reading up as much as i can about it

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  11. My 4 year old son, had this exactly 4 years ago today! He was 3 months old and was projectile vomiting, and couldn't poop or pee. I took him into the pedi, and she said it was a bug. We ended up in the ER the next morning, and transferred to our local Children's Hospital. They didn't know what was wrong, the suspected intusspection (sp?), and did ultrasounds, and CT scans, and barium thing. They couldn't find out what was causing the blockage, so they had to do exploratory surgery and we found out it was Meckel's Diverticulum, which it got stuck on the inside of his belly button and his intestines wrapped around and caused the blockage, and it caused that portion to die off-but they also had to remove the illeum valve (which is not fun!!) and they took out his appendix as well. He now has short gut syndrome-they took out 45cm-so he has chronic diarrhea-which is not fun at all! Poor baby! We were in the hospital for 8 days!! I wish there was more information out there, but this is so rare and not common it's hard to process it all!

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    1. Hello Crys
      I hope your son is doing well with no complications, i am writing to know as your son has this surgery 4 years ago..my daughter had surgery for her meckels 4 months ago with 60 cm of her small intestine resected as well. It was all of sudden episodes of projectile vomits and tummy distention. She is doing okay by gods grace, but i feel scared all the time ..due to damn risk of adhesions and all..Can you plz boost me as you have gone through from all this

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  12. My 4 year old son, had this exactly 4 years ago today! He was 3 months old and was projectile vomiting, and couldn't poop or pee. I took him into the pedi, and she said it was a bug. We ended up in the ER the next morning, and transferred to our local Children's Hospital. They didn't know what was wrong, the suspected intusspection (sp?), and did ultrasounds, and CT scans, and barium thing. They couldn't find out what was causing the blockage, so they had to do exploratory surgery and we found out it was Meckel's Diverticulum, which it got stuck on the inside of his belly button and his intestines wrapped around and caused the blockage, and it caused that portion to die off-but they also had to remove the illeum valve (which is not fun!!) and they took out his appendix as well. He now has short gut syndrome-they took out 45cm-so he has chronic diarrhea-which is not fun at all! Poor baby! We were in the hospital for 8 days!! I wish there was more information out there, but this is so rare and not common it's hard to process it all!

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  13. My son had Meckel's and our first instinct that something was wrong was when he got really lathargic and couldn't hold down anything without vomiting it a few minutes later. For the mommas here. Just a warning, this is ER worthy if your child starts vomiting green bile!!! This is what my son started doing which prompted the doctors to take him seriously and give him a CAT scan when otherwise they thought it was just a stomach bug. If its green vomit, watch out!!! Take care mommas. Also i wish there were more articles out there about this. Plus articles that dealt with how people live after this surgery to get it out. Are there any life long things to worry about afterwards????

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  14. Penyebab kutil kelamin atau kondiloma yg ketahuan oleh warga hanyalah virus, sekalipun penyebab yang lain lagi tidak sedikit yg belum mengetahuinya. Kondiloma solo mempunyai kualitas lain kasat mata kutil kelamin atau jengger ayam. keluhan itu sanggup sosor bagus perempuan ataupun lelaki, kala meraup kutil kelamin mereka tak tak tahu kalau itu yaitu kutil kelamin. persuasi yg salah menyangkut kutil kelamin ialah kutil kelamin tidaklah berbahaya maka dapat didiamkan demikian saja.

    wawasan yg sebentar berkaitan kutil kelamin menghasilkan anggapan-anggapan salah bermunculan. nasihat yg salah itu diperkuat bersama pembawaan alamat kutil kelamin itu tunggal di mana kutil kelamin mampu lenyap seterusnya unjuk juga. kalau kamu menerima kutil kelamin sebaiknya kamu mengobatinya hingga rampung ke akarnya maka elemen genital kamu sanggup terlepas awal virus tersebut.

    kekhususan partikularitas Kutil Kelamin kondiloma

    Ada sekian banyak keistimewaan atau instruksi berasal kutil kelamin, permasalahan ini sanggup menjadi keluhan paling membekukan di aspek apabila tak langsung di obati. tak cuma perempuan saja yg layak mewaspadai kutil kelamin, cowok masih mesti mewaspadai munculnya kutil kelamin tertera. Berikut ini aba-aba munculnya kutil kelamin atau kondiloma yg layak diwaspadai :

    Munculnya Benjolan
    tak seluruh benjolan yg unjuk di kelamin yakni kutil kelamin. Benjolan di kelamin sanggup konkret infeksi, jerawat dan salah tunya yaitu kutil. Benjolan yg bermunculan dan bergerombol di kelamin ialah kutil kelamin. tidak serupa bersama bengkak dan jerawat yg kebanyakan tak bergerombol.

    berbobot Daging
    Benjolan yg unjuk di kelamin tak cuma sekedar benjolan saja. Kutil kelamin mempunyai keunikan tersendiri berbobot daging dan semula jaringan. bila luka dan jerawat rata-rata berkualitas air, sekalipun terhadap kutil kelamin berkualitas daging tumbuh.

    wujudnya Kecil
    Benjolan yg unjuk di kelamin mempunyai takaran yg mungil. sebab bergerombol ukurannya sanggup gede dan masih tidak sedikit.

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