UPDATE - 09/01/08

Karen had another appointment with her rheumatologist this past week. It seems that frustration will continue to be the prominent feeling for at least a little longer, as we still have no diagnosis.

The PA at the rheumatologist's office feels pretty confident with a diagnosis of chron's , but has been having a difficult time getting any cooperation from the GI doctor. Apparently, he deems himself too important to speak with a lowly physician's assistant and is even willing to compromise the well-being of his patient for the sake of his apparently brittle pride.

While they are less often, Karen has still been having a few days where she is bed-ridden. The PA was a bit tentative about saying that this would ever cease, but did indicate that if they can get her meds right, they should come less and less often. She would really like to start her on a second medication, a biologic, but needs to consult with a GI doctor that is familiar with Karen's case. We have set up an appointment with a GI doc in the same building as her rheumatologist with the hope that they will be better able to communicate with one another.

Karen has been having persistent pain in her lower back lately. When she mentioned this to the PA, she ran some tests and discovered that Karen has a pretty significant kidney infection. They are treating this with a heavy dose of antibiotics. This infection is most likely due to Karen's diminished immune system caused by the Methotrexate and is likely a sign of things to come. We were really hoping the susceptibility to infection would be a side effect we wouldn't see for some time.

Finally, Karen is not getting much sleep. This is from Prednisone and will continue to bother Karen until they get all of the Methotrexate on board, at which time we hope to be able to wean her off the steroid.

While I realize the tone of this post has been pretty negative, Karen has been handling everything wonderfully. She is much better off than she was a month ago and I know she will continue to improve. Please keep her in your thoughts and prayers.

UPDATE - 08/12/08

Things have been going well for Karen since my last post. We haven't heard anything new from the doctors, hopefully they will have something for us in the next week or so.

Karen only has to take her Methotrexate once a week. For the time being, Thursdays are her medicine days. The past two Thursdays have actually gone quite well. She has had some nausea, not much of an appetite and a lot of fatigue that lasts for several days, but so far it has been relatively tolerable. Praise God!

UPDATE - 08/04/08

Apparently, there are still a number of you stopping by to follow Karen's progess. Sorry for the lack of updates! I didn't realize y'all were still checking in here.

Several days after Karen's release from the hospital, she followed up with her primary care doctor. He was not very confident in the G.I. doc's assesment of things. With her G.I. history, combined with all of the rheumatologic issues, the PCP felt pretty confident that her diagnosis would turn out to be Colitis or Crohn's. Unfortunately, however, (and I don't necessarily blame him) he didn't want to step up and treat or diagnose her for a disease process that he doesn't specialize in.

About two weeks ago, Karen got in to see the rheumatologist for a follow-up to the hospital visit. The rheumatologist had been unaware of the hospital stay or any of the findings made there, so we spent most of the appointment bringing her up to speed on things. When she found out about the G.I. issues, she was very reluctant to do anything and attempted to refer us back to the G.I. doc.

We expressed our frustration with the way everyone was referring us to someone else, and that no one was providing us any answers, or more importantly, any relief for Karen. She could see our distress, so she stopped what she was doing and went to see a G.I. doc in the building for a consult. After about 45 minutes, she returned and advised Karen to start taking the Methotrexate (this is the chemotherapy drug we refused to put her on before) along with steroids, until they have a chance to develop a more specific treatment plan for her condition. She requested Karen return in 4-6 weeks, after she had an opportunity to see her G.I. doc and get the results from the biopsy taken during the scopes.

This morning, she had her follow-up visit with the G.I. doc. Unforunately, however, the biopsy report was inconclusive, which has left him a bit baffled. He is certain that she suffers from some type of autoimmune disorder, but that the disease process she is experiencing doesn't fall in line with any other documented process. In fact, he went so far as to say that hers may very well be a case studied by doctors and academia because of it's unusual nature.

As you can imagine, this is not really what we wanted to hear. He sent her for more blood tests to help narrow things down. He is going to consult further with our rheumatologist and other specialists. He may even refer her to a more experienced GI doc that specializes in inflamatory bowel disease. He also wants to repeat the colonoscopy in a few weeks.

In the mean time, she will continue taking the methotrexate and the steroids. She took her first dose last thursday, and it wasn't very pleasant for her. Basically, she spent the entire day suffering from extreme exhaustion and nausea. She has since gotten over the nausea, but has not really recovered from the exhaustion. The dosages will continue to increase over the next month, so be praying that she will become more tollerant of the meds. This is a medication that she will be on for a long time, unless we can find some sort of alternative.

Although the doctors are not very thrilled about it, we are still seeking out non-medical treatment options. There are a number of folks out there that claim to have been healed from these types of disease processes through special diets and supplements. We will begin to implementing these ideas immediately with the hope of eventually weaning her back off all the medications. We'll see.

I know there are a lot of you out there praying for her. You are all such wonderful friends to her! Thank you! Please keep praying! I don't know how, yet, but I'm confident that she will be completely healed of all of this!

On a brighter note, Karen got to go to the concert of a lifetime last Friday night. As she put it, "My life is now complete." For those of you that don't know it, Karen loves John Mayer. I was able to get her 4th row tickets to see John Mayer and Colbie Caillat. She said it was just incredible. Here are a couple of pics from the evening.

Another Diagnosis??!!

Well, the day Karen was released, the Internal Medicine doctor came by to release her. She said that she looked at the GI's findings and did not agree. She said that ischemic colitis is typically found in patients 50 and older with low blood pressure, a history of stroke and vascular issues. She said that it was possible a tiny clot could do that, although highly unlikely. Karen has high bood pressure and doesn't fit that criteria. She explained that she is fairly confident that it is Ulcerative Colitis or Crohn's. That would explain all of her current symptoms along with several symptoms she's had for many years. This was NOT what we wanted to hear. On Wednesday, Karen went to see her regular internal medicine doc and he went over all of her hospital records with her and is in agreement. He said that he is 95% sure that the biopsies will prove this. The treatment is typically low dose chemo, steroids and several other meds. The goal is to get her into remission and prevent flares. The more damage is done, the more likely resection or complete bowel removal ("a bag") is. Her appointment with the GI docor is on August 4th. That's when she'll receive the biopsy results. Although, we KNOW that things could be MUCH worse, we are very discouraged with this diagnosis because it is a chronic condition. Karen is in good spirits, but still in some pain. She is so happy to be home with the kids!! Angie has been a great help to our family and a great friend to Karen during this time. She's got so many great friends. Her phone rings all day long, although that's nothing new! Please continue to pray for her complete healing along with peace of mind for our family during this transition. Above all of this, we want to continue to praise God for all of the many wonderful things that He has done and continues to do for our family!!!! We can make it through ANYTHING!



" Thou art the God that doest wonders: thou has declared thy strength amoung the people." Psalm 77:14

She's home!!!!!!!!!!!!!!!!!!!!

Time for some well-deserved rest!

Please read!

I found this while surfing some blogs tonight. I couldn't help but pass it on, especially considering what Karen has been through this week.


Prayers Needed!
Last year I asked some of my friends to pray for one of my college room-mates, Rachel Miracle. I am again asking for prayers on her behalf. Rachel is the most caring and loving christian person you will ever meet. She lives in Bushland, Texas with her husband Mark.They have two children, William and Hadley.
Rachel was diagnosed a couple of years ago with colon cancer. It has spread to her other major organs. She has been treated in Amarillo, Houston, and San Antonio. Last month doctors have told her that her little body can not take any more chemo or radiation.
Her family and her have decided to try an alternate homeopathic treatment in Reno, Nevada. She flew out there last week and they did all kinds of blood work. She is now home awaiting the results of the lab reports which were sent to Germany to be analyzed. She will go back to Reno in a couple of weeks with her Mother for the necessary treatments. Apparently in Nevada different drugs can be administered that are not legal in Texas.
I don't ask that you pray for a miracle on Rachel's behalf...I only ask that you pray. That you ask your family, your friends, and your church that God's will be done in Rachel's life. She is so precious to all of us.
II Corinthians 4:16-18Therefore we do not lose heart. Even though our outward man is being renewed day by day. For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory, while we do not look at the things which are seen, but at the things which are not seen. For the things which are seen are temporary, but the things which are not seen are eternal.

Please take a moment to pray for Rachel!

Praise God!!!!

They just finished with Karen's scope. I'm waiting for her to come up from recovery. No chron's disease, no ulcerative colitis, no cancer!!!!!!!!

She only had a small area of irritation, or colitis. The doctor referred to it as an ischemic colitis. This is not a chronic condition. Ischemic colitis is a small area of inflamation of the bowel, caused by an inadequate blood flow to the area.

We'll have to do further testing to determine what caused the lack of blood flow to the area, but this is not considered a severe condition!! More than likely, there will be some tie to the other rheumatologic issues she's been dealing with, but we still consider this finding to be a blessing!

While we still have to deal with the autoimmune issues, things are not nearly as urgent or severe as we had feared. She may even get to go home tomorrow!

Thank you all for your prayers! From all we have heard from the doctors and nurses the past several days, this is nothing less than a miracle. Our God is an AWESOME God!!!!!!

Monday Afternoon

They just took Karen back for her scopes. She will have one from the top down, and one from the bottom up. They figured they'd check the whole thing while they were in there. This should take about an hour, then we'll spend and hour or so in recovery. I hope to be able to post something just as soon as we get back to her room.

I hate hospitals!!!

Well, the scope won't be until some time this afternoon. No one can tell us exactly when. They don't seem to care that she hasn't had anything to eat or drink in over 16hrs.

I'll post something this afternoon just as soon as we learn something.

Thursday Afternoon

Karen seems to be having another "flare" today. It isn't anything like last Wednesday, but she is experiencing all of her symptoms today. The diarehha started again this morning. Fortunately, there was no blood this time! Her feet, knee, hip and back joints have been hurting a lot.

She has just started her colonoscopy prep. Be praying for her that her evening is not nearly as bad as we're anticipating! Also, pray for us for a miraculous word from the doctors tomorrow after her scope.

We love you all!! Thanks a million for all your help, thoughts and prayers!!

Sunday Morning

Karen feels pretty good this morning, but is dreading this afternoon. They will begin her colonoscopy prep at about three. Please, no visitors after three this afternoon. She will be constantly in and out of the restroom for the remainder of the evening.

TMI....

I've been told some folks are a bit confused, so I'll try to elaborate on what's going on. As the title of this post indicates, this may be too much information for some of you, so if you don't want to hear about Karen's bowel issues, stop reading here.

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.

We're Moving

We just found out we'll be moving to room 5027 in the next hour or so.

Saturday Morning

Karen's feeling pretty good this morning! Bailey's here visiting right now. Tyler is at the Mathias'. I think they're having a good time. They've been spending a lot of time with friends. We've sure been missing them, but consider ourselves blessed to have such great friends helping out!!

It looks like they will be moving us to another room some time today. This floor is really for labor/delivery patients. You'll have to check back here or call me on my cell to find out where we've moved. Karen is on the "no info" list, which means they won't release any information at all about her. The only reason she's done this is due to the fact that she worked here for some 12+ years and doesn't want all her ex-coworkers nosing into her personal business.

We've had a ton of visitors and calls from friends, family and church family. We are so blessed!!! Thank you all so much!

Friday Evening

We've just finished dinner and are getting ready to watch a movie before we hit the hay.

Karen's pain meds have worn off, so she's starting to hurt again. She's missing real food a lot. She's been on liquids since she checked in Wednesday night. Every meal has been the same, too; chicken broth, jello, fruit-flavored icee and fruit juice. Yum!!!!

I'm praying tomorrow will be a much better day for her!

Friday Afternoon

If you're here, I'm sure you already know most of what's going on with Karen. The only new news is that the gastrointerologist finally came by about an hour ago. Basically, he just confirmed what we already suspected.

For right now, he just wants to give her bowels some time to rest while they pump her full of antibiotics and other fluids. He's hopes she will be ready for the colonoscopy by Monday, so that means we're stuck here til then, if not later.

He thinks this is all a part of her fouled up autoimmune system. He won't say for sure until after the scope, but he suspects the diagnosis will be Crohn's or Colitis. Both of these are very closely related to Rheumatoid Arthritis, which is what her rheumatologist had previously diagnosed. I can't even begin to adequately explain any of these diseases, but the juxt of it is that her autoimmune system is messed up and attacking her own body. All of these conditions are chronic and there is no real cure for any of it, so please pray with us for long-term remission.

Karen is feeling pretty good right now. They have finally given her something for her cramping and pain. Any of you who've endured a stay at the hospital know how hard sleep is to come by with all the blood draws, vital checks, etc, so she's still pretty tired.

Thanks to all of you for the calls of concern, prayers and flowers!!! We are truly blessed with a bunch of great friends, family and an amazing church family!!