Karen has had "irritable bowel syndrome" since she was about 18. This diagnosis was originally reached after a trip to the hospital due to severe cramping of the bowels and significant rectal bleeding.
From that point to about a year ago, she suffered from extreme constipation. She managed that as best she could, but would often go a week or more between bowel movements.
About a year ago, the constipation stopped, but she began having diarrhea with every bowel movement. She really didn't think anything of it because she was told this was normal with IBS; in fact, she was relieved to be able to go to the restroom on a normal basis.
Last spring, we took a cruise to Mexico. While there, she got a really strange skin thing. She had several places on her body that turned red and blistered (not a sunburn). We never figured out what caused it, but they eventually healed. They left dark brown spots where they had been. A steroid shot cleared them up.
Shortly after the skin deal, she had an issue with one of her eyes. Apparently, her eyes were so dry that one of her eyelids stuck to her eye and ripped a portion of it off. This was very painful, but fortunately the doctor she went to knew what she was doing. In fact, this was the first person to suggest an autoimmune link. She said that she had euvitis, which is normally seen with chronic inflammation.
At about the same time she was experiencing the trouble with her eyes, she began to have pain in the joints of her feet. She eventually (after several months), went to see a podiatrist. He noticed that a number of her foot joints appeared to be deteriorating and suggested she get to a rheumatologist immediately.
We quickly discovered, however, that there are very few rheumatologists in the DFW area. Even if you can find one that will take your insurance, it generally takes at least six months to get in. We settled for an appointment, six weeks out, with a physician's assistant.
While waiting for that appointment, Karen went to see her primary care doctor. He did a pretty thorough work-up on her and discovered that her white blood cells were elevated. He said this was no big deal though.
Also, while waiting for her appointment with the rheumatologist's P.A., she began running a fever every day. It was usually a low-grade fever, but occasionally would run higher and would cause her to be bed-bound for a day or two at a time. She also had swelling and stiffness in her hands. She would frequently drop things and had a difficult time walking.
She eventually got in to see the rheumatolist's P.A. She learned nothing at her first appointment. Basically, they took a bunch of blood/X-rays and told her to come back in a month.
At the follow-up visit, we learned that she had tested negative for Rhuematoid Arthritis, but that it is possible to test negative and still have RA. The PA diagnosed her with sero-negative RA and began treating her. The treatment included steroids and Methotrexate, a low-dose chemotherapy drug and plaquenil.
Our research of RA basically told us that it is an autoimmune disorder. The RA sufferer's autoimmune system is overactive. For some reason, it recognizes normal components of the body as foreign and begins attacking them. It normally focuses it's attention on the joints, eventually destroying them, but it can also attack other parts of the body.
Karen took the steroids for a while and saw some improvement, but was frightened by the side-effects of taking them long term. She never started the Methotrexate. It is a toxin, intentionally introduced into the body to poison the autoimmune system. All of these drugs can harm your major organs and you have to be monitored very closely. After much consideration, she and I decided to try some less invasive therapies, primarily a change in diet.
Once the steroids began to wear off, Karen began to spiral downward. The joint pain returned almost immediately. The fevers and overall sickly feelings returned. This continued until it peaked this past Wednesday.
On Wednesday afternoon, Karen went out to lunch with some friends. She only had a baked potato and tea. An hour or two after returning home, she began to have multiple bouts of diarhea. She was going to the restroom every thirty to forty-five minutes. The diarhea eventually turned into nothing but blood. This started around 2:30pm ended around 11:30pm. After calling her PCP, we left for the hospital around 10:30pm. After a VERY long time in the ER, they did a CT of the abdomen. They found that her entire bowel was very inflammed. They said that they thought it was some type of Colitis/Crohn's and that she would be admitted with a GI consult. They started her on heavy duty antibiotics, did bloodwork, etc. She was in alot of pain and had fever for the first couple of days. The GI doctor confirmed the diagnosis(or suspected diagnosis) and he will do an EGD(down the top) and a colonoscopy(up the bottom) on Monday.
As far as the disease process, it is an autoimmune disease, as I mentioned. There is no known cause, but a link to genetics. It is very commonly thought to be IBS in the beginning. As the disease progresses, it can involve the joints, eyes, skin and major organs. Basically, the body is attacking itself. If left untreated, it can cause debilitation and multiple organ damage. Most people get diagnosed much sooner. She has probably had this for about 17 years so it has done quite a bit of damage. There is no cure. The treatment is about the same meds as with RA. Methotrexate, steroids,etc. are used along with other meds. The goal is remission and limited "flare ups". If the bowel is damaged enough, it is fairly common to have to have a resection or possibly a "bag"(removal of the bowels). Of course, that is a last ditch resort.
Please pray with us for a good report on Monday! We serve an able God! Also, please pray for the children. This has been a difficult time for all of us.
Thanks again to everyone for all of the phone calls, visits, flowers and gifts! Also, we have six friends along with our family that is fighting over who can watch our children. We can't tell you how much we appreciate all of you! We are truly blessed! And again, our church family is amazing!! It truly is a "family" and we are so happy to be a part of it.
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