I have been dealing with “undiagnosed” digestive issues since I was 25. I have spent a majority of my 20’s and now the beginning of my 30’s suffering and living a life controlled by digestive motility disorders.
It all started with not being able to go to the bathroom for weeks at a time, nausea, noticeable and uncomfortable bloating (look pregnant/clothes not fitting), painful stomach cramping, chest pains and gurgling/trapped air in chest (unable to burp), weight gain, and increased stress and depression levels. It has ruined events and vacations, my attendance at work, my self-esteem and has been the cause of many sleepless nights. Needless to say I have gained a really good relationship with my heating pad.
After doctor after doctor, specialist after specialst, having every procedure/test/x-ray imaginable, trying all sorts of diets and food restrictions, doing physical therapy and many trials of medications I was being told I just had IBS-C and Acid Reflux. I knew there was something more serious going on with me so I kept pushing on with more doctors and more tests.
They eventually diagnosed me as having weak peristaltic function of the esophagus (which explains the pains/gurgling/trapped air in chest and inability to burp) and a small/normal sized anterior rectocele (which was caused by all the years I have been straining). Neither of these explained why I was suffering from the other more serious issues I was having. They were actually more less issues I was having as a result of the more serious things that were going on in my body.
At one point I had to actually ask to have a colonoscopy (yep I asked for one that is how bad I was suffering!) During the colonoscopy they could not even finish it. My large intestine was so long and loopy that they called it a “tortuous colon”. And since they could not finish it that meant more tests in order to check the rest of it that they could not get through. I thought finally they figured it out and I could finally get this taken care of. That was until the doctor told me there was nothing they could do for me and there was NO surgery to fix it. I was devastated.
After much research I found that there were surgeries for dysfunctional colons and started to reach out to colon surgeons instead of GI doctors. I then started to be told that a total colectomy surgery could be the answer but that the surgery is frowned upon in younger adults. One surgeon wanted to give me a temporary colostomy bag to test motility before removing my large intestine despite all the testing I already had done showing the motility was abnormal. This would have consisted of 3 or more surgeries in a row. This made me weary as I was always under the impression that surgery was to fix things not diagnose things. That surgeon also told me there was no other testing that I could have and the colostomy bag would be the only way to know for sure (I learned later that they were wrong and I was right to follow my instinct not to move forward with them).
Another colon surgeon told me that the colostomy bag was not necessary based on my test results (I soon learned later that he was correct). His diagnosis was: “I believe that we have established that your colon motility is markedly abnormal based on the results of your Sitz marker study. Evaluation of your small bowel motility was the 24 hour Sitz marker image ““ yours shows all the markers in you colon by that time, as would be expected with normal small bowel motility. The evaluation that you have had was appropriate and thorough to rule out pelvic floor/neurologic abnormalities that can be the primary source of abnormal colonic transit, such as short segment Hirschsprung’s disease, a large rectocele, or pelvic dyssynergia. Although you have a small rectocele, I agree that this is not the source of your problem. The other tests results (positive rectal anal inhibitory reflex, adequate balloon expulsion test, normal defecography) have essentially ruled out these other causes of constipation.”
I was stressed on the edge of deciding if I should move forward with surgery why doctors kept giving me mixed messages. No one could even give me a name for my condition and the surgeons were disagreeing on how my surgery should be done. I was hitting dead end after dead end with doctors (still accumulating the expenses). How was one to decide on such a major surgery with so many doctors disagreeing if it would work? I kept asking my Mom to pull some strings in heaven and send me a sign on what I should do. I was starting to feel depression setting in even more.
Looking for feedback from others suffering with motility disorders I found a site http://www.inspire.com/groups/agmd-gi-motility/ and got a response from a woman named Marcia who told me there WERE other tests out there and that there are doctors who specialize in motility disorders like mine. She gave me the name and contact information of a doctor telling me “you have to see him!!” I listened to her and sent my story to Dr. Camilleri at the Mayo Clinic in MN. Not only did he respond but he also got me on his waitlist as he felt there were still tests that needed to be done before I moved forward with surgery! He was quite upset that anyone would tell me that I would need 3 surgeries and a colostomy bag to test motility!
I traveled to Mayo and stayed there a week where I met with Dr. Camilleri and had a full 48 hour slow transit study, an EKG, more blood work and a colonic manometry done. Based on my medical records, past test/procedures results and his findings I finally got answers!
My right side of my large intestine was slow and backing up into my small intestine. The pacemaker cells on that side were obviously not working. They referred to this as slow transit. I did not have IBS or SIBO! The issues I was experiencing were due to the issues with the abnormal, dieing colon! My colon was VERY long, loopy and tortuous as previously discovered. During the UN-SEDATED colonic manometry procedure they had the same trouble the doctors in the past had with my colonoscopy. To the point they had to do it twice and it hurt like hell! There was still some contraction going on in my colon when given a small meal and when given iv medication so before moving forward with surgery I was put on a one month trial of Resolor (which had to be shipped from the UK through a Canadian pharmacy so insurance would not cover it and I had to pay $150 a script out of pocket for it). Despite being done with medication Dr. Camilleri’s reasoning for trying the medication and based on my colonic manometry results I agreed to try it. Unfortunately my body did not react positively to it and made me sicker. We even tried Resolor with Miralax and still nothing (literally). Dr. Camilleri was shocked and knew he had his answer!
At this point Dr. Camilleri felt I had tried everything and I moved forward with scheduling my laparoscopic colectomy with ileorectal anastomosis surgery at the Mayo Clinic – Rochester Methodist Hospital in MN. I had to travel 7 – 8 hours there and back just for a surgery consultation with Dr. Cima who is the surgeon that Dr. Camilleri had referred me to. Dr. Cima agreed to do the surgery. He felt that I was a good candidate for a successful surgery because my pelvic floor and rectum muscles are still working and are strong. And my small intestine was still functioning. The good thing about the ton of procedures I had went through is that I knew everything was in working order which helps to avoid as many post op complications as possible. Once the large intestine is gone.. its gone!
************ UPDATED SUMMARY SINCE SURGERY ************
* January 18th, 2013 – I had a laparoscopic colectomy with ileorectal anastomosis surgery done by Dr. Cima at Rochester Methodist Hospital (Mayo). The surgery went well and they removed 10 ft of large intestine (a normal one is 5 ft). The surgeons kept telling me “it was VERY VERY long” as if they had never seen one so long before. I was in the hospital for 8 days due to complications. I was throwing up every day until I was given an NG tube. They said my small bowel was taking its time to wake up. I was released from the hospital on Jan 25th.
* January 27th, 2013 – I was rushed back into Mayo by ambulance (thank god we hadn’t got on our flight home yet) and was re-admitted. I was in massive amounts of pain to the point the paramedics had to pick me up off the hotel bathroom floor and I was having panic attacks . Apparently I had formed a blockage. They told me there was a twist in my small intestine near the anastomosis site that was “flopping over blocking the rectum”. They also discovered a blood clot in my liver that formed during surgery that they had no idea was there. At the hospital the pain was so unbearable I was in tears and screaming in pain. My husband, Frank even told the nurses “my wife is a tough woman.. if she is in this much pain something is seriously wrong!!”. After ALOT of morphine/dilaudid, another NG tube, CT scans, xrays, a sigmoidoscopy with balloon dilation, a decompression tube and alot of monitoring I was finally released on Feb 5th and after almost a month in Minnesota we were able to fly home.
My large intestine was sent to pathology and I asked for it to be donated for research at Mayo so they can get a better handle as to why this is happening in some people. They found there were barely any nerves left in the lining of my large intestine!! It really was DEAD! They even sent me a photo (see it in my updates). Now I have proof that it wasn’t “just IBS” or that I was not crazy and something was seriously wrong!!
* February 26, 2013 – I was rushed to my local Silvercross Hospital ER in Illinois. After weeks of very painful cramping my bowel movements started to slow down drastically. Each time I was concerned I would contact Dr. Cima and his staff who would tell me this was the normal surgery healing process and not to be alarmed. Before I knew it I had not had a bowel movement in 3 days, was noticeably bloated and in more pain. I decided to contact Dr. Camilleri who instructed me to go to my local ER. I am glad that I did. The blockage came back with a vengeance. In a sense it never left. The doctors as Silvercross explained to me that the first blockage I got may have been due to the flopped over twisted section of the small intestine blocking my rectum however the twist was still there and would continue to cause me problems. The twist was the way my small bowl naturally curved when the surgeons connected it to my rectum. However it was a 360 degree twist right before the anastomosis. When the doctors at Mayo cleared the blockage with the balloon dilation the twist moved away from the rectum and opened up but it formed a crease where it had flopped over. So then my body tried to heal the crease and in the process was closing up the anastomosis connection. A GI doctor at Silver Cross tried the less evasive approach to see if another sigmoidoscopy/balloon dilation would open up the anastomosis connection but it was to the point it was pretty much almost completely healed shut and the procedure only lead me to more massive amounts of pain and the tubes were removed immediately. By then it was more days of no bowel movements and my small intestine was becoming inflamed and the pain was getting worse. I was put back on a morphine drip to make me “comfortable”. It came down to it that another surgery was the only way to fix it. I was given Dr. Bass who was a wonderful surgeon. On March 2nd, he went in to do laproscopic surgery but ended up having to do “open” surgery to be able to see and fix things correctly. He removed the twisted area of the small intestine as well as the original anastomosis connection that was closing shut. He then created a new anastomosis connection that flows with my body and has a larger diameter. The small bowel no longer twists as it connects to the rectum. It now flows with the correct curvature to allow bowel movements to flow the way they are suppose to with less chance of a recurring blockage. In a sense he fixed my plumbing 🙂 He also removed a small cyst on my right fallopian tube while he was in there that I was not aware of. I was released to start my recovery process all over again on the evening of March 6th. To say the least I was mentally and physically put through the ringer. I have even had quite a few mental breakdowns of depression during my recovery process but I pulled through. Since then I have been dealing with post operative sporadic chest pain attacks that they think could be bile reflux.They cause me to miss days at work and leave me incapable of doing anything when they happen. They feel like a heart attack and are incredibly scary. The day after it feels like someone had punched me in my chest and it takes me a few days to finally feel normal again.
* June 12th, 2014 – I was rushed to the ER at Silvercross again. I was having a chest pain attack that was worse then any of the ones I have had since my surgery. It shot across my chest and even down my back. After blood work, xrays, ultrasounds and gi cocktails they discovered I had pancreatitis and gallstones. I am on medication for nausea, spasmatic pain and anxiety (as needed).I have scheduled an ERCP with Dr. Ayub and gallbladder removal surgery with Dr. Bass. I have re-set my GoFundMe goal to reflect the new upcoming struggles.
* July 15, 2014 – Went into the hospital to have my outpatient ERCP done by Dr. Ayub. He went in and cleaned out my bile and pancreas ducts and got all the gallstones out of them. He also put in 2 metal stents. One for the bile duct and one for the pancreas. What was suppose to be outpatient landed me hospitalized for 5 days. At first they wanted to keep me to monitor me overnight because I was having trouble waking from anesthesia. Then when I finally woke up I was in a lot of pain. My pancreas became inflammed from the procedure and I formed pancreatitis again. The stents were also causing me additional sharp shooting pains in my side. I was released to go home on July 19, 2014.
* August 1, 2014 – I had my surgery to have my gallbladder removed. Dr. Bass was able to do it laproscopicly. He said that the surgery went well and that when he took my gallbladder out it was distended and larger then a normal size gallbladder. He is confident that the gallbladder has been causing my chest pain attacks for the past year. I was released to go home and was doing great until about 1am. I went to lay down in bed and was in so much pain I could not move. This was not typical incision pain or discomfort. Frank had to rush me to the ER. I was admitted back into the hospital for pain management and monitoring. Apparently I was experiencing muscle spasms as well as ileus (my bowels were not waking up fast enough). I was released to go home a few days later. I was on more unpaid medical leave to recover. My digestive system is trying to adjust to not having a gallbladder on top of already not having a large intestine. I am scheduled to have my stents removed on Sept. 9th, 2014.
It has been quite the journey and I am still dealing with my set backs but I am happy and grateful that I moved forward with my surgery. I actually forgot what it felt like to be empty even if it means being a little more empty then the average person and I thank my lucky stars there was an answer for me even if I had to be the one to push the doctors in the right direction. I do not experience CONSTANT stomach aches, bloating to the point of looking pregnant, my clothes fit and are actually too big on me and for the first time in 8 years can go to the bathroom. I do have to live differently as I am now missing parts of my digestive track and it does have it’s set backs but not the set backs I was facing before. It’s not an easy recovery process and the complications have been scary as hell but it has been worth it. I also know that had I given up and not tried over and over again to finally get a diagnosis I would have ended up on the ER table having this surgery done on me anyways (and hopefully the right one). So for those still looking for answers don’t be discouraged by my journey! Keep looking for answers and don’t let any doctor tell you it’s “just IBS and heartburn”. That’s what they told me and now I am living with no large intestine and no gallbladder because they were not functioning correctly! If you feel it is something more then that get another opinion until someone does something about it!
TRUST YOUR GUT!!!
~ Nicole Garcia ~