Allow me to introduce myself. I am a 69year old male, retired though quite active, and an avid traveler. Over the last several years, I lived and worked in Peru and spent two winters in Thailand where I explored SE Asia. I was also quite healthy. Most of this initial discussion is about seemingly unrelated non MC health issues but further reading will demonstrate why I included all these details.
In July 2016,I returned from a trip to Europe (via Bangkok) and began experiencing severe urine retention on the flight back. I visited my brother for a few days in New England before returning to my hometown in Denver. Immediately, I went to the ER as my urine retention persisted. The doctors provided a catheter to remedy temporarily my retention and sent me for a CT scan. After the scan, my ER doc said it look as if I had lymphoma, which was later confirmed by a hematologist several days later.
During the remainder of 2016, I underwent procedures to alleviate my urine retention including a ‘TURP’ operation. I also had an operation on my stomach for a lymph node sample for diagnostic purposes as I had active lymph nodes on both sides of my abdomen. The stomach operation, which was suppose to be out-patient turned out to be problematic as I ended up with a 8 day stay in the hospital due to ileus. This is a paralysis of the intestine that resulted in fecal incontinence for several days. It was My first experience with this humiliating symptom often associated with MC.
My chemotherapy treatment began in late November for Hodgkins Lymphoma and I was cured of the cancer in late March, 2017. Immediately thereafter, I started having constipation for as much as six days followed with ‘WD’, after having a BM. Sometimes my BM was almost normal but I started to learn that the WD afterward would stay for a few days and eventually led to some instances of incontinence.
This led to meeting a GI who requested a colonoscopy. Before the procedure, I described my symptoms and after reviewing my colonoscopy, he blamed a malfunction of my pudendahl nerve located in my abdomen for my problems though wondered if my chemo treatment may have played a role. Around this time, I also started having problems with urine retention again ultimately leading to using a catheter on a full time basis. This meant my TURP operation was a failure.
The conditions have persisted for several months with my digestion. However, during this time, my hematologist asked me take a MRI on my back as the PET scan, which is used for checking for lymphoma, showed an anomaly at the base of my spine. As the results indicated, I have a slow growing (about ten years) tumor or mass about the size of a walnut compressing the nerves, including nerves that go to my bladder and intestines.
The referred neurosurgeons think the mass is benign but should be operated/removed to protect again further growth, to confirm it is, indeed, benign, and to alleviate my nerve
Conditions. Interesting enough, one of the symptoms of problems with pudendal nerve is urine retention. Desperate as I am, I have agreed to an operation, scheduled for Nov. 29.
However, yesterday, I saw a new GI who after being puzzled for a while about my condition seemed to finally to settle on my condition as MC. He never addressed the pudendal nerve scenario though said to come back if the operation on my tumor did not solve the issue.
But he also recommended I start using Metamucil to address my constipation issues. When I googled MC though I discovered this board and criticism about using Metamucil as many recommend a low fiber diet, including the Mayo Clinic. I would appreciate any comments on the use of Metamucil.
The last few weeks, I now have more WD than I do C and no ’accidents’ though that maybe more because I am more in tune with what is going on with me. However, I don’t know if I really have MC, or it’s my pudendal nerves, or side effects from the chemo treatments.
Anyway, I am facing a new world, like most members of this board. My dreams of retirement seem more a dream than a reality and an uncertain future now awaits.
Do I have MC?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi,
Welcome to the forum. MC is a complex disease and it can affect many organs which can complicate other issues that are on-going. Like you, my original reaction pattern alternated between constipation and diarrhea. But as the disease progressed, the diarrhea phase was more persistent. It often causes fecal incontinence, and some "accidents" can seem almost "explosive". When influenced/compounded with the nerve damage that you are suffering from the tumor, it can be a complex, difficult-to-control situation.
I had ileus with my last abdominal surgery, but it was expected because of all the handling of my guts. Summer before last I had a surprise visit from ileus when I reacted to some peanuts. An EnteroLab test confirmed that I had become soy-sensitive (which affects also most legumes). Fortunately, while I was in the ER waiting for test results, the ileus resolved by itself, so the doctors' confirmation that I had ileus was a moot point.
Regarding Metamucil, as I recall it's based on psyllium husks, which is a water-soluble form of fiber and therefore less of a problem for MC patients. It can be helpful for constitpation-dominant MC patients, so it might be helpful for the constipation phases of your symptoms. It's insoluble fiber that is particularly troublesome for most MC patients.
Unless you want to use drugs for the rest of your life to control the MC symptoms (which may or may not work in your case), the MC will require some diet changes. But it may be more convenient to begin them after the surgery because antibiotics and chemotherapy drugs are usually not compatible with MC for most patients. At any rate, we'll try to help in any way we can.
Again, welcome aboard, and best of luck with the surgery and recovery.
Tex
Welcome to the forum. MC is a complex disease and it can affect many organs which can complicate other issues that are on-going. Like you, my original reaction pattern alternated between constipation and diarrhea. But as the disease progressed, the diarrhea phase was more persistent. It often causes fecal incontinence, and some "accidents" can seem almost "explosive". When influenced/compounded with the nerve damage that you are suffering from the tumor, it can be a complex, difficult-to-control situation.
I had ileus with my last abdominal surgery, but it was expected because of all the handling of my guts. Summer before last I had a surprise visit from ileus when I reacted to some peanuts. An EnteroLab test confirmed that I had become soy-sensitive (which affects also most legumes). Fortunately, while I was in the ER waiting for test results, the ileus resolved by itself, so the doctors' confirmation that I had ileus was a moot point.
Regarding Metamucil, as I recall it's based on psyllium husks, which is a water-soluble form of fiber and therefore less of a problem for MC patients. It can be helpful for constitpation-dominant MC patients, so it might be helpful for the constipation phases of your symptoms. It's insoluble fiber that is particularly troublesome for most MC patients.
Unless you want to use drugs for the rest of your life to control the MC symptoms (which may or may not work in your case), the MC will require some diet changes. But it may be more convenient to begin them after the surgery because antibiotics and chemotherapy drugs are usually not compatible with MC for most patients. At any rate, we'll try to help in any way we can.
Again, welcome aboard, and best of luck with the surgery and recovery.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.