Would like to talk to other people with rumination syndrome
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Sorry for digging up an old post, but I just joined connect and found this post. My wife was diagnosed with rumination syndrome from doctors at the Rochester, MN Mayo Clinic hospital back in early 2007. It’s been 12 years and she is still having to deal with the symptoms on a daily basis. We have been to numerous G.I. Doctors in Georgia and even Texas and so far none have been able to actually figure out what’s wrong with my wife. We have grown to realize we just have to take things day by day. She has her good days, but she also has her bad days which can be hard on a family. My wife had dreams of pursuing a career and ever since she got sick 12 years ago, she hasn’t really been able to hold a job or really even pursue her dream. I’ve been the sole provider for my family this whole time and it tears her apart because she feels like she can’t help financially. We make things work, and she’s a strong woman to have to deal with this on a daily basis.
The Mayo Clinic so far has been the only place that’s actually diagnosed her with something, no other doctors have ever seen a case like hers before. She’s only 37 years old but got diagnosed when she was just 25 years old. She is seeing a pain manager for chronic abdominal pain and he has her on fentanyl patches. She’s been on these patches for years, I’d say at least 5 or 6 years. One other doctor did say that she had chronic pancreatitis and that might explain the constant abdominal pain. I guess the reason I looked this up is because we’ve been dealing with this for so long, we are just tired and frankly want answers to our questions. When is enough...enough, you know. Why does it have to be her, what did she do to deserve this? How long is it gonna take, before someone figures this out and we can live our normal lives not having to worry about this anymore. I need to reach out to someone, but I didn’t know who so I came back to the only place we seen some sort of results. I’m really hoping the Mayo Clinic can see this and make an attempt to react out to me. We are desperate and are just looking for some support that’s all. If not, we’ll be fine...we’ll just keep doing what we’ve been doing taking things a day at a time. Thank you.
Hi @mmacnelly thank you for telling you and your wife's story. That must be so difficult to see her in so much pain.
I wanted to tag @kariulrich and @contentandwell as they have experience with chronic health issues, and may be able offer you support.
I also wanted to share a link to the Cargivers group, so you can connect with others who take care of a loved one: https://connect.mayoclinic.org/group/caregivers/
How have you been feeling helping your wife with this?
Hi @mmacnelly - I am so sorry to hear about the pain and difficulty you and your wife have faced. Here is a thread that may give you some more information... make sure to click on it so you see the newest posts first. There is a dad who talks about his 17 year old daughter being diagnosed with rumination syndrome.
It sounds like your diagnosis at Mayo was 2007. Have you been back recently? They make such wonderful strides I'm hoping that you might get more help if you see them again. I'm just hoping for the best for you and your wife.
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@ethanmcconkey I really have not had any chronic conditions unless you consider things like Barrett's Esophagus and Diabetes to be chronic, which they are but they are diagnosed and treated.
@mmacnelly I am so sorry that you and your wife are going through this. What did Mayo suggest when they diagnosed it as rumination syndrome? I just googled it and it sounds as if biofeedback is one of the ways to deal with it. It sounds as if that diagnosis and the more recent one of chronic pancreatitis are in conflict. If it is chronic pancreatitis what can be done for that? She is way too young to be dealing with such a chronic condition and not able to work or function well. I hope you find some relief for her, from some doctor. If the strategies for rumination syndrome did not help her then it could be chronic pancreatitis, in which case I would think that there might be a more actual treatment for it, but I am not familiar with pancreatitis so I really do not know.
I presume you have sought out different opinions from other gastroenterologists, hopefully at another large medical center. I am sure you are actively pursuing a diagnosis and help for her. Please keep us up on her progress.
I wasn’t with my wife when she was med evacuated to the Mayo Clinic, so I’m not sure exactly what they told her for treatment. I know she did come back with a meditation plan, I guess they had her listen to some calming music and meditate whenever she had symptoms of vomiting. It was weird, but we saw results and to be honest she still meditates to this day when she feels sick. I don’t recall her having abdominal pain back when she was diagnosed from the Mayo Clinic. I think she didn’t start having the abdominal pain until 2009 when we were living in Georgia. We lived in Georgia for 8 1/2 years and I was in the Air Force so we had to get approvals to see doctors from the military. It wasn’t easy and we didn’t have free reign to just go to anybody we wanted. Tricare only covered certain hospitals, but most of the GI doctors we saw were down in Jacksonville, Fl. Doctors ran tests on her and unfortunately weren’t able to find anything really wrong with her. They all said her organs looked good and she just had elevated levels, they did numerous endoscopy’s and colonoscopy’s, MRI’s, they did an egg test with barium, X-ray’s, they even did a DNA study to look at her chromosomes. They found out morphine doesn’t work on her at all as she lacks a certain chromosome needed for morphine to work. Basically, we’d see a doctor for months and months and month up into the point where they’d run out of ideas and recommend us to someone else who they thought would be better help to her. Now when that would happen, I’d have to go talk to a military doctor to let them know what was up and start another process to get approvals to see the new doctor. Sometimes that would take months before the approvals went through. I’m not sure if the abdominal pain relates to her rumination syndrome. I guess I really need to give you all the back story to how all this started.
So here’s the back story:
We were living in Anchorage, Alaska from 2005-2007 and we decided to have a baby. Sure enough, as luck had it she got pregnant in earlier 2006. She had a terrible pregnancy, she had morning sickness the entire pregnancy (started at about 8 weeks and lasted the entire 9 months). Doctors at the hospital on base (I was in the Air Force stationed there) had her in and out of the hospital the entire pregnancy. It was rough, she spent most of her pregnancy admitted into the hospital labor and delivery department and she was admitted so much they gave her her own room to make her more comfortable. The doctors had no idea what was causing all her problems and just kept her medicated for the baby. They kept saying they couldn’t do much because she was pregnant and they didn’t want to hurt the baby. At some point, she couldn’t keep anything down so they had to give her a pic line and put her on feeding tubes. She ended up loosing almost 40 pounds during her pregnancy, but luckily the baby came out healthy and normal. Doctors swore up and down that she was sick because of the baby and that once she delivers everything would be back to normal, that wasn’t the case at all. Our son was born on Nov. 29th 2006, and two weeks after she delivered they ran some tests on her and found out she had gal stones and diverticulitis. They couldn’t explain why or how she ended up with diverticulitis and just told us it’s not common in women as young as she was, she was 26 years old. On Dec 25th, 2006 they performed surgery on her to remove her gal bladder and the diverticulum. They all assumed this would be it, and even told us after surgery everything would go back to normal (yeah, we’d heard that before). That didn’t work either, as she was still sick and vomiting days later. She went back into the hospital and she was put into a room there. Mean while, I’m stuck at home this whole time with a new born, weeks old baby. Luckily I had a good Chief (Boss) that knew the situation we were in and he pretty much told me not to go back to work until my wife got better. I told him, umm...sir, you realize that could be months - and he responded with I don’t care your family is the most important thing and take care of them, don’t worry about us or the work as it will still get done. I stopped working the day my son was born and didn’t go back until the second week of February.
Eventually, doctors there ran out of ideas and really ran out of support for her, so what they did was they reacted out to other hospitals and gave them her back story and her records to see if there was any other hospital who could take her and try to help her out. Providence hospital in Anchorage was on the verge of taking her, but they found out all the tests they wanted to run on her had already been done by the military hospital, so ultimately they turned her down. That’s when the Mayo Clinic in Rochester stepped up and said they’d take her. She needed a medical escort because of her condition and I couldn’t go because I was at home taking care of our son, so we had her grandmother escort her there and back. It was a really good experience overall, the military ended up paying to have her grandmother fly from south Texas (where she lived) out to Travis AFB, California to meet her there. Anchorage hospital put her in a medical C-130 and flew her to Travis AFB non stop from Alaska, from there she was transferred from the military plane into a med evac private jet with EMT’s on board, and her and her grandmother flew from California to Minnesota non stop. Once they landed at the airport they were put into an ambulance and taken straight to the hospital where she was registered and admitted. The military even paid for her grandmothers hotel room while they were there. The very next day she met a bunch of doctors, I’m not exactly sure what all happened, but I know they ran more tests on her and eventually determined it was rumination syndrome. She was there at the clinic for 8 days and they had already figured out what was going on with her. They put her on a treatment plan which was the meditation techniques and sent her back home to me. Her grandmother escorted her back to Alaska so it was nice having her grandmother there for a few weeks before she had to fly back home to Texas. Her grandmother was able to play and take care of the baby while I could tend to my wife and once she got better I was able to go back to work a few weeks later. For the rest of our time in Alaska, we felt like we had everything back to normal, she was able to eat food again, she was gaining some weight again, she was feeling good, but we ended up moving to Georgia and it must have been all the stress because within a few weeks of being in Georgia she was already having those puking spells starting again. Since then to this day its been the same 12 years later, although as mentioned before back in 2009 she started experiencing abdominal pain.
A little bit of history:
The hospital had my wife on some medications that probably weren’t the best for her during her pregnancy. They had her on Zofran, Reglan, Thorazine, Dilaudid, Morphine, who knows what else all while she was pregnant. We were worried about the baby, didn’t know what to expect. My son came out weighing 6 pounds 13 oz and made it to full term, my wife was weak during delivery so the doctors had to help suction him out. With his cone head he measured 21 inches long, but was otherwise normal and healthy. The doctors said he took everything he needed from her and that’s why they had to do, what they had to do to keep them both alive and stable. The way it seems, this all started the moment we found out my wife was pregnant. We have wondered time and time again, that if we never got pregnant would she have ever gotten sick? That’s a tough question to ask yourself. With me being in the Air Force working as an engine and aircraft mechanic, I’ve been around some harsh chemicals and fuilds before, could I have transmitted something to her without either of us knowing. I had been deployed to a foreign country (Afghanistan) years before we decided to have a baby. Maybe it was something transferred from when I returned from Afghanistan, probably not the case but who knows.
I know what you and your family are going through.. I too have been dealing with rumination syndrome for 15 years.
Growing up, I guess you could say I was living my childhood dream.. I was very close with my mother, was well liked by my peers, and did pretty decent in school.. I spent a lot of time burning energy, hiking, martial arts, dance, anything active.. I appeared to be a normal, healthy, strong young lady.. the only thing my parents took note of, was that i had a weaker stomach then most people.. As a baby my family would go on road trips and I would be crying the whole trip. Eventually after multiple times of me vomiting in the car, my mom assumed that I was crying because I was car sick.. As I got older, and I was still vomiting quite frequently, my mom assumed that I was being too active too soon after meals, and just told me to wait awhile before I ran around, and didn't think too much more of it.. We could have never predicted that these were early signs of a potentially life threatening disease that I would be dealing with the rest of my life.
At 15, while on vacation for mothers day, we noticed that maybe this issue is actually something abnormal.. After having a wonderful dinner a few blocks away from our hotel, we started to walk back.. Engaging in conversation, we came to a crosswalk, and as my mom was talking, I put my hand out gesturing to hold on, and I turned around and a large amount of food came up.. My mom and I looked at each other confused... I had not experienced any nausea, no gagging... and I didnt feel ill.. These pauses happened frequently until we got back to the hotel, when it finally came to a stop when I was just expelling liquids, and was otherwise, kind of hungry again.
This problem continued for months and it was obvious that whatever was happening, was getting rapidly worse by the day.. By the time I finally went to the emergency room, I had lost nearly 10lbs (originally I stayed around 98lbs at 5'3), and was now unable to hold down anything, including fluids. I was severely dehydrated, and lightheaded constantly, but what was really killing me, was the unquenchable hunger I had been experiencing during these months.. I literally felt like I was starving to death.
Over the next 3 years, I was hospitalized, referred in every direction, from pediatric gastroenterologists, to psychiatrists, even tried seeing holistic doctors, but had no results, and continued to lose weight and naturally, deteriorate.. I remember telling my pediatrician one visit, " I don't care if the problem is medical or psychological, please just help me fix it!"..
I was becoming severely ill, extremely depressed, and knew I was dying.. I was put on numerous medications, misdiagnosis, feeding tubes, IVS, and now spent the majority of my highschool years in and out of hospitals. Now at less than 80 lbs, My mother and I had accepted the possibility that I might not be alive to graduate highschool.. We started to give up on finding a cure..
As the next few years went on, I did the best I could to live a normal life.. My friends were used to my situation, and adapted to my odd response to meals, and over time, I learned little tricks that seemed to help my involuntary need to expel anything I consumed. For example, I learned that the only thing that I could drink that would cause me discomfort was carbonated beverages. For me, Diet Coke.. I also started to self medicate.. I was home schooled at this point, because I wasn't just hungry at this point, I looked terrible. My hair was falling out, my eyesight was going, I blacked out nearly every time i stood up.. I started using drugs in hopes that it would take the edge off the hunger pains, and maybe give me some extra energy so i could hang out with my friends without fainting and ruining everyone's time.. The drugs helped me with that, and even physically I started looking healthier.. my weight started to stabilize, and my skin had more color... as strange as it sounds, the doctors later told me that the drugs were probably helping my body absorb what little nutrients i was consuming, at a much faster rate, basically speeding up my metabolism enough to maintain my weight.. Of course, we knew that this was not fixing my issue, but it at least eased the pain and allowed me to live a bit more comfortably, at least temporarily.. and at this stage in my life, all i was looking for was something temporary because I was under the assumption that I wouldn't be alive much longer anyway.
Fast forwarding past the legal issues that concluded my illegal use of controlled substances as my medication, I found myself the age of 20, and right back to where I started with my medical condition. I was off drugs now, but my health seemed to plummet even quicker this time around. I decided that I would try again to see another specialist. I was now no longer a minor, and that opened up a lot of options on where I could seek the best medical help.
I wound up seeing a specialist at USC, where I found myself re taking a lot of the same tests, and three times a week I received intravenous nutrition and hydration... after about 6 months of seeing the same dr. And running every lab and test he could think of, I was diagnosed with rumination syndrome, but was then told that this was a field he did not specialise in, and otherwise, knew nothing about. . This was the most hopeless I had felt in my life at this point.. knowing what my disease was and also learning that there was no treatment for my issue...
Fast forwarding to present day... I am now 30 years old, and have been living with this illness for 15 years, on again off again using drugs to slow down the deterioration of my health but in result causing me emotional issues, as well as legal issues, ending in several incarcerations, and my health and weight still going up and down... I find myself an average 90-95 lbs, still living off diet coke...and in amazement that my body hadn't hasn't given up on me yet..
I wish I could conclude my story with a happy ending, but the truth is, I found this website because I am still looking for answers and wondering who else out there is suffering from these issues and if they are as lost and confused by this situation as I am...
What I can say, is that when i first started this battle, to when i was diagnosed, until now.... it is incredible how much more studies and research has been done involving this underdiagnosed disease, and it is such a great thing that people are coming out about the issues they are experiencing, and allowing the doctors more education on the subject, and may eventually, find a way to treat rumination syndrome effectively. everytime I read a new article and realize that I am not the only person going through this, it gives me hope that I will eventually live a normal, healthy life someday.
And one positive thing that has come out of this experience, is that I can honestly say, that the body is a miraculous creation, and shockingly, extremely adaptable... I have lived through circumstances that all medical drs. In the world, it is impossible to survive... but here I stand, getting stronger somehow each day.. and adapting to the unimaginable.. Let's put it this way... if our world ever suffered through an event where our water supply ran dry.... I can almost guarantee that I will outlive 98 percent of the human population... because my body has somehow figured out another way to stay alive without the need of water.. Maybe I'm an alien, maybe I'm a walking miracle... or just maybe the human body is underestimated and can withstand much more than we could ever imagine..
Thanks for allowing me to share my story.
Hello @freelowdown and welcome to Mayo Clinic Connect.
I appreciate your sharing your history of rumination syndrome. This was unfamiliar to me but I found some information on Mayo Clinic's website. Here is the link, https://www.mayoclinicproceedings.org/article/S0025-6196(11)63571-4/fulltext.
From the article, it appears as if this syndrome was first studied in the 17th century.
If you are comfortable doing so, I would be interested in learning what you do eat during your typical day. Do you take vitamins or other supplements?
@freelowdown thank you for sharing your painful journey here. I hope you are going to find some good advice here in the community. I was thinking maybe you could try RTT, check out the following link https://rtt.com/
All the best,
Hello, I know this thread is old but I wanted to reach out because my daughter was diagnosed with rumination syndrome and it has been an unsteady life for her. Has anyone found some resolution to this illness?
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