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- Thu Sep 25, 2008 9:57 am
Up until 1997 I had not had any major health problems. That year, I started having unexplained bouts of explosive diarrhea, sometimes multiple times a day and lasting for a number of days on end. After various tests, my Primary Care Physician referred me to a Gastroenterologist, who ordered a Colonoscopy. The test founds Microscopic or Lymphacitic Colitis in the lower right quadrant. I was treated with Asacol, and after approximately 2 years, I was able to regulate myself with fiber and diet, with occasional flare-ups.
In April 2006, I started experiencing severe muscle spasms and pain in my legs, enough so that I went to the emergency room for treatment. I was eventually referred to a Neurologist and a MRI was taken. He found inflammation of the cervical spinal cord. It appeared that the outside sheathe was deteriorating and there was some nerve damage beginning to take place. I was tested for auto immune and demylination disorders, with negative results. I was experiencing hypersensitivity, clonus and loss of balance and coordination. After extensive treatment with high doses of Prednasone, as well as physical therapy to aid with the balance issues, the symptoms subsided approximately 6 months later.
Around late November 2007, I began having intermittent bouts of explosive diarrhea again. I returned to my Gastroenterologist and restarted taking Asacol, which seemed to control the problem. I underwent another Colonoscopy at the end of February 2008. The results were that the area of colitis was still there, but not inflamed. Diverticulosis was also found in the lower left quadrant, but was not severe. A biopsy was done for Crohn’s at that time, which was negative. Since there was no inflammation, my Doctor recommended that I stop the Asacol and return to the fiber and diet routine, which had helped previously, which I did.
On May 30, 2007, I started experiencing diarrhea again. This persisted every day, multiple times a day for the next 3 months. Please note, during that 3 months, there was never a day that I had stools that were solid in any form, they were completely liquid stools. An average day found me in the bathroom 6-10 times a day and 2-3 times overnight. If I wanted to go somewhere in the morning, I could not eat. I could not eat before going to work. I would then eat Jell-O and drink Ensure on my lunch break, which would still put me in the bathroom within 1 hour and at least twice before I went home. My weight and my stamina fell drastically. I managed to control some of the weight loss by using Ensure 4-5 times daily. Since everything was going through me within 15-30 minutes after I ate anyway, I ate anything I wanted, including high calorie foods, hoping to get some weight benefit from them.
I contacted my Gasteroenterologist numerous times over this time period. We went through the protocol of medications, Asacol, Flagyl, Diflucan, Prednisone, with none helping at all. At the peak, I was using Imodium at the maximum dose and the only result was to delay the attack by an hour. Stool samples were taken; blood test and urinalysis were done. I was tested for infection, bacteria, parasites, IDB, Crohn’s. Everything came back negative. In the meantime, I was chained to the house and bathroom, and constantly fatigued.
Almost 3 months to the day, my diarrhea stopped. I still have loose stools with a great deal of gas and cramping. Otherwise, my stools are like “pellets”, small, individual, with a great amount of gas. There is phlegm like substance that is excreted at each bowel movement and sometimes without an actual movement. When I pass gas, there is a “foamy” mucus type discharge, so I must always be on the toilet when passing gas.
At the same time that my diarrhea stopped, I started to bleed vaginally. My periods have been irregular, anywhere from 2 months to 5 months apart as I move slowly towards menopause, but never last more than 6-7 days. To date, I am still bleeding. (25 days) Yesterday the bleeding was so heavy (it was more like hemorrhaging) that I called my OB/GYN. I have undergone a sonogram that found a couple of fibroids and a small cyst on my ovaries, but nothing to explain the bleeding. My doctor prescribed Progesterone to take along with my Prempro. He felt that the debilitating effects of the 3 months of diarrhea and malnutrition were probably contributing to my bleeding.
Now, while still bleeding, the leg spasms and pains have started reoccurring, with some clonus in the right leg.
I feel like my body is attacking itself, that my immune system has gone haywire. Each doctor that I go to throws medications at the symptoms, but I cannot get them to look at my condition as a whole. I truly believe that I am experiencing some kind of autoimmune disorder that manifests itself in different parts of the body. Do you know of any such condition that these symptoms might correspond with? Do you have any advice as to how I can find a physician who can help me? I am really tired of being told that it is stress! No Duh! You have the runs for 3 moths straight and see if you don’t have stress! But something started it, and they are not looking at that. If you or anyone that you know can lead me in the right direction, or suggest a kind of doctor that may be familiar with conditions such as mine, I would be eternally grateful. I’m sick and tired of being sick and tired. I want my life back.
| John Kenyon, CNA
- Wed Oct 08, 2008 10:15 pm
While your history certainly suggests an autoimmune disorder, these can sometimes be extremely difficult to pin down -- which, in some instances, winds up being the primary characeristic, such as in the case of lupus, which can affect many different body systems and can move around or alternate affected sites. I assume you've been tested for this and autoimmune factors in general, but if not, then that certainly does need to be done.
There is one other possibility, which again may have been tested for, but I suspect not, which is celiac disease. This disease, which involves the inability to tolerate gluten in the diet (and this covers a lot more ground than just wheat) is often associated with autoimmune diseases as well, although the reasons are poorly understood. This could at least account for the terrible GI symptoms if it were found to be present.
Intense scrutiny of the immune factors is certainly in order. Perhaps being worked up at one of the larger medical centers would bring you more progress toward resolution of these issues.
I wish I could give you something more to work with, but it's really going to be a matter of good, solid detective work.
Best of luck to you. Please follow up with us as needed.
- Thu Jan 08, 2009 11:47 am
Hx. of SLE x 19 years. 2 mo. ago trace blood noted on UA (mentsrual cycle not on). No protein or bacteria in blood. Creat. and BUN normal. Went for CT scan showed "spot" in abdomen near kidneys. MRI showed the same but closer to uterus. OBGYN did pelvic exam and US which showed him a solid mass (10cm) that he"thinks" is a fibroid near my rectum. Actually he reports one above and below my uterus. Reports partial hysterectomy is the only way. No abnormal bleeding or abdominal pain. Periodic pressure in lower back. No urinary pain. + periodic urinary frequnecy with periodic stress incontinence X 2-3 years. Have been having loose stools x 2-3 weeks. (2-4 x/day;tan- very dark brown in color, at times watery usually proceeded with intestinal "rumbling")Have also been more flatulent than usual over past 2 mo. Have been on ABT x 10 mo's for MRSA infections. (Hx. MRSA x 16 years;contracted from hospital admission) Have also been having periodic episodes of feeling real hot, though with minimal perspiration.
1) With the other symptoms (urinary, GI) could there be something that is being overlooked? Possibly something some other test might reveal?
2) If all of this is related to a fibroid(s) is the removal of my uterus the only way? ( I am 40 y.o.; gravida 1, para 0 secondary to miscarriage) Would like to have a child although would not be devastated if that was not probable. Are there any new techniques?