Wednesday, August 20, 2003

Third Follow Up

I went to the doc yesterday. I am very growly about the whole thing. The one that has been assigned as my regular gi doc is out of town, so I saw a different doc in the practice. Which is fine, I don't particularly like my regular doc and this is one that was decent to me when I was in the hospital.

So, he goes through, wants to put me back on prednisone, I explained that I didn't do much better on that than I am now off of it and the side effects of the pred sucked. Wants me to try colazol again, which I had serious almost going to the hospital again reaction to 2 1/2 months ago when they tried it last. Then he decides to up my 6-mp again which is what the regular doc discussed last time I was there and then doing a test in 2 weeks to see if I have therapeutic levels. No problem.

Then during the examination he says that I am running out of options for treatment and that the next step would be remicade or surgery. He didn't seem all that fond of remicade. I have my own questions there...whether insurance will cover, what it involves, etc. He says "If this is affecting your quality of life, then surgery seems like the way to go" Uh well, DUH its affecting my quality of life, I am in the bathroom all the time and in a lot of pain, exhausted much of the time and can't do nearly the things I should be able to do.

After that...we sit back down and he is prepping to write the scripts and I ask about pain meds. I explain that the Tylenol 3 isn't working anymore (which I had said at the beginning of the appt...that it worked for a couple weeks and then stopped so I stopped using it.) I got this LONGGGGGGGGGG lecture about narcotic usage and how I should avoid it. He made me feel like a junkie even though I really am loathe to take any medication esp the pain meds unless I am really miserable. I hated the whole thing. It is hard for me to go in and ask for meds, particularly pain meds in the first place and to be treated like that made it even worse.

He also wants to do another colonoscopy but wants my reg gi doc to order it and such. So I was supposed to have an appt in 4 weeks, they couldn't schedule me until September. Grrr. I don't have time in September for such things. The blood test can't be done by the lab that the insurance covers so I have to go to another lab. (lets hope insurance will cover it...)

I came home ranting about how I wasn't going back. I really don't want to. I am tired of all of this. Anyone got a good snake oil treatment that can't possibly work any worse than all that I have taken so far? Yeah, yeah I know...I just wish something would work without having to deal with the doctors.

After the Follow Up

After the Second Follow Up

I was less than excited by the idea of enemas. Every night for two weeks? Take them and stay in bed for 8 hours without using the bathroom? Is she kidding?

It took a few days for the drugstore to get the enemas in so that I could pick them up. No problem. I wasn't in a hurry.

Once I picked them up, I read the directions. I wasn't thrilled. This looked like all the side effects of prednisone combined with the "fun and excitement" of an enema. It took me about five more days to get up the nerve and figure out the logistics of doing this discreetly. At this point, my girlfriend probably doesn't care, has seen and heard more about my bowels than she ever wanted to know, but I do care.

I took a painkiller, imodium, and benadryl since the label suggested that sedation and anti diarrheal and cramping meds might help. I then followed the directions for the use of the enema. It wasn't too bad. I didn't cramp horribly and though I had less than amusing noises from my belly, it really wasn't uncomfortable. Not only that...the next day I didn't go to the bathroom AT ALL. That was a first for a good long time. I was pleased. That next night I gave up on all the prep stuff and went for night two. Still, not so bad, mild cramping. Nothing serious. Hey, if this continues to help, I am game. Ah, well, it continued to help to some degree. Then it stopped helping. Things have been worse again. I am in my second week now of the two week course. What next? I am not sure but we will see.

Thursday, June 19, 2003

Second Follow Up

About six weeks later it was time for another follow up visit. More labs had been done. I had had bronchitis, cellulitis, and some nasty asthma problems halfway between visits. These had been treated with antibiotics,advair, and the usual arsenal of allergy meds and decongestents. The bronchitis lingered but that was to be expected since the 6-mp and prednisone both trash your immune system.

The doctor came in. This was the original one I saw and the one who did the colonoscopy. She reviewed everything. She must have gotten the message about me discontinuing the Colazol(I was concerned she may not have) or just knew not to yell when I said I wasn't taking it.

I discussed my continuing problems. I told her that while the cramping was some better most of the time, diarrhea was still daily. I explained that things are never completely good and that sometimes they are really bad. I described my back ache (which doesn't interest her though it is something unique since the time I was hospitalized). I answered the usual questions about bathroom visits, quality, cramping, etc.

I left after getting a semi-lecture/pep talk about the fact that I am unusual in my reaction to the 5-ASA drugs (Asacol and Colazol), that the 6-mp takes time to work, that Ulcerative Colitis isn't a easy clear cut black and white disease to treat. Basically a be patient lecture. I also left with a new prescription for pain medication (Tylenol 3) and Colocort Enemas.

Thursday, April 10, 2003

The Medications

We stopped at the pharmacy to pick up the prescriptions on the way home. I was woozy and out of it. I was very weak from not walking and being sick. This combined into being very out of it. We had prescriptions for 6-MP (Purinethol), Prednisone, Hyoscyamine, and Lortab.

6-MP/MERCAPTOPURINE/Purinethol is an antimetabolite drug used to treat some forms of cancer. It is sometimes referred to as a chemotherapy drug. It is also used to treat Ulcerative Colitis. The dosage is based on weight. My starting dose for this was 50mg a day. You require regular blood tests to keep tabs on the medication's effect on your body.

Prednisone is a corticosteroid used to treat all sorts of things from allergies and asthma to yes, ulcerative colitis. Dosage for this was stepped down each week after leaving the hospital. You can't just take it and then stop. This is unfortunate, since despite all the good it can do, it also has numerous side effects that often can seem worse than what it is treating!

Hyoscyamine is an anti spasmodic drug that dissolves under your tongue. It was prescribed to help with the cramping.

Lortab-Lortab is a combination of Hydrocodone and acetaminophin to treat pain.

For the first few days home, I was still seriously out of it. I couldn't do much. I was unsteady walking, talking, moving. Driving was seriously out even when I wasn't taking painkillers. I wanted to be back into the swing of things. I tried to catch up with work. Mostly though I was completely knocked out or hyped up on the medication, sometimes both at the same time. I tried hard to eat a healthy diet, drink plenty of water and get rest. I compulsively took my medicine on time.

Soon I started to feel back to normal. At least, some semblance of normal. My strength returned to a reasonable degree. The drops in the prednisone dosage were keeping me from being so scattered. Sleeping at night was a lost cause though. So were a lot of short term memory sorts of things. I was grouchy, "weird", and not myself. This mostly frustrated me.

I was also frustrated by the fact that I was no better than I was before I even went to the doctor. In some ways, I felt worse because of the side effects. I kept giving it time. I knew the Prednisone side effects would fade as the dosage continued to decrease. I knew it took a while for the 6-mp to kick in and work. So, despite the fact that patience isn't one of my virtues, I tried to be patient.

Thursday, March 27, 2003

The Hospital

My girlfriend drove me to the hospital. She dropped me off in front and I hobbled in. I signed in at the desk and waited to be called back to triage. They soon called me. I gave them the run down. I hurt. I have been in the bathroom non-stop for a good long time and feel like death warmed over.

They grab a wheelchair. Off to the admissions desk. Lots of questions. Lots of forms to sign. Do I have a Living Will? Or something? Ai yi yi. No, but I should. But I am not thinking. I scrawl my name on a bunch of papers. Off to wait to be seen

I am wheeled back to my very own er cubicle. Things start to get hazy at this point. I remember my lips were very chapped. I remember I hurt. I remember a doctor from the GI practice came. I remember a nice Irish nurse came and started my iv. I know they finally gave me painkillers. I know that they collected a urine? stool? sample and that my girlfriend had to stand in the bathroom with me while I did that fun stuff. I also had some sort of x-ray. I don't remember this at all. Next thing I know, I am being admitted. They asked if I wanted a private or semi private room over some weird intercom. I said whatever. I really wanted a private room but figured the insurance company wouldn't have paid. In any case, I got wheeled into a hallway to wait for a room. Up to the room now, I got the bed by the window, the "big" side of the room. IV running, pain meds, steroids. They tell me that evening that I can also have anti anxiety meds and sleeping meds. Uh huh, whatever. The next 10 days pass in a blur. I remember after my first roommate left, I asked for the other side of the room so I didn't have to trip over other people's family members on the way to the bathroom. Then I missed the window and the big side of the room. I only had to trip over my family members.

I am not sure how many room mates I had while I was there 5? 6? I remember a sweet old woman and her husband. She was having a lot of trouble getting the care she needed. Her husband was very sweet to us. I remember one woman told she couldn't have intercourse for some period of time and her and her husband discussing what counted for intercourse after the doctor left.

I remember wanting to work, being frustrated I couldn't. I remember wanting my kids. I don't know what it was about being in the hospital, but I missed my kids more than ever. I wanted to be home. I wanted them to annoy me. I wanted to fix lunches and dinners.

My friends were great though. Lots of long distance calls to me. Flowers, balloons, teddy bears, cards, emails. It was wonderful. I am not sure I made all that much sense. I doubt I did a good job thanking everyone. But it was very, very appreciated and special.

Most special of course was my girlfriend. She knocked herself out. She managed wrangling my children, her children, her job, everything while I was completely out of it. Not only that, she spent so many hours everyday right next to me. She worked at the hospital. She tended our life from the hospital. Then she would go run children around, made sure they had what they needed. Then she would be back. She would stay late into the evening, going home around 11 and working more from home with the faster connection. She would be back though the next day, as soon as she could. She wasn't eating right. She wasn't sleeping. But she was taking good care of me. She asked questions. She looked up meds. She translated for me to the doctor and the other way around. She got permission for me to walk. She got permission for me to go outside. She brought stuff to me. Most of all she held my hand, watched while I dozed, and crawled into the tiny hospital bed with me and held me. She dealt gracefully with staff and people thinking she was my mother, aunt, sister, or friend.

I had more tests in the hospital. A CAT scan, a sigmoidoscopy, blood tests. The CAT scan required another tasty barium cocktail. Most people get to have a different sort of contrast but because of my allergy to nutrasweet, I was unable to drink the first one offered. After the drink, I was taken to the room for the CAT scan. It was cold, but a short, easy test. Lay still. Don't look at the light. Hold your breath when the signal said to do so.

The sigmoidoscopy was like the colonoscopy, except no prep was needed. It seemed to go easier than the colonoscopy in general too.

They showed things were looking better, but that didn't mean I was feeling better. I was eating nothing and still in the bathroom more than 20 times a day.

They had continued the Asacol in the hospital. I had pointed out that I thought it might have something to do with the problems. Finally, one of the docs in the practice decided to pull the Asacol. I started to get better. It was about time. I hurt still. I still was in the bathroom all the time. They had been switching pain meds and steroids so I was down to oral meds only. Then they started 6-MP which was to be my replacement for the Asacol. However, I felt crummier by the day. It was clear that no more good could come from the hospital though. Time to go home.

A fistful of prescriptions, a car full of stuff collected at the hospital from flowers to the scissors and tweezers they used to pull the pic line out, and we were on our way.

Monday, March 17, 2003

The Results

The Results

About a week to ten days after the colonoscopy, I got a call from the nurse at the office. The biopsy showed ulcerative colitis. The doctor wanted to put me on Asacol. I called back after looking it up and asked about my sulfa allergies. They called back and said it was fine. I went to the drugstore to pick it up. NINE huge pills a day. Expensive ones. But if that was what it was going to take to feel better, then I would take them. I was great about taking them on time and regularly. (even though I grumbled) One day in I was sure that they were making me achey. But I was busy with other things, building a garden, a big project at work. Those got blamed for my aching instead...since that was more logical. Two days into this med, I could hardly move. I hurt BAD! I couldn't even cut French Toast. I gave it another day and the achiness seemed better. My bathroom trips didn't seem better. However, this isn't a drug that works instantly.

The Upper GI and Small Bowel Study

Later that week, it was time for the upper GI and small bowel study. No biggy I thought. I had this one done during a hospitalization when I was a child. I remembered the x-ray room being cold and the barium as being no thrill but not overall bad.

I was in for a surprise! I went to the local radiology lab. I filled out a ton of paperwork. (again!) Then I got ushered back to a series of dressing rooms, where I changed out of my clothes and into a hospital gown. It was FREEZING. I sat and read my book on this little bench in the dressing room. There were chairs in the hallway filled with other people waiting as well. After a wait, I was ushered into the radiology room. I got to take something that was like unflavored poprocks on steroids, then quickly followed by some extra thick barium. Then the x-rays started. At some points I could watch on a tv screen. That was pretty interesting. The tipping and turning of the table wasn't all that fun. The tummy prodding wasn't fun. We are already talking about a tummy that was not all that painfree before they started poking it this way and that. The techs were nice and friendly but I had to roll my eyes as they would tell me to get in the bathing suit model position. Lots of clicking. Then out in the hall to wait. In about a half hour...more poking, prodding, positioning and pictures.
Uh-oh...not going through fast enough...(geez, everything has run through me for months, why not this?) so another special barium drink. This one out in the hall. By this point, I am seriously ready to both belch and toss my cookies, which are the number one rules that I was not allowed to do. They then tell me to walk and stand rather than sit to wait. So, I do, in this very crowded, very cold hallway. Another woman is there going through the same test. She is younger, nervous, and really looks scared. We get to talking about the test. She says her doctor things she has Crohn's or UC, but they really aren't sure at all. The woman sitting next to her starts rambling about how she better pray it isn't Crohn's. She starts listing off the horrors of Crohn's. Yikes. I suggest the young woman visit the Crohn's and Colitis board at iVillage. She seemed grateful. Time for more pictures!

These were taken in another room. "That other room is being used currently by patients who are on target for the time" Meaning, I was slow and they weren't going to waste the good room on me if I wasn't ready for the full set of pics. I was though. After a bit more waiting, I got to go back to the other room. I got poked and turned some more and the last set of pictures was done! Yay! I hurridly got dressed and left. I went home. Tossed my cookies. I felt pretty drained but made it through the day.

The weekend following was busy. I had a big project at work to get done. Everyone was working hard, not aided by numerous tech set backs. I worked. I felt pretty bad but I worked. When working it was pretty easy to ignore most of the yuckiness. By Sunday night, I was in rough shape though. I called the doctor on call. He called back. He said to take some imodium, get some sleep and call the doc in the morning. Ok. Can do.

By morning, I was on to feeling REALLY REALLY bad. I called and they said come in at noon and we will work you in or go to the ER. Ok. I can go in at noon. I talked to work. They said whatever worked and they understood. Things got worse. I ended up going to the ER.

Saturday, March 08, 2003

The First Follow Up Visit

The first follow up visit occurred about six weeks after I got out of the hospital. I had not heard a word from the doctor's since I left the hospital. I got there to find that my appointment was with an assistant. This didn't particularly trouble me. However, the lab results from my blood tests had not been received by the office. They had to get those faxed in. No one seemed to have a clear idea of what meds I was taking except for me. The assistant ended up calling in an available doctor. He prescribed Colazol (a medication similar to Asacol), increased my dosage of 6-mp, and gave me a plan to complete the weaning of the Prednisone.(YAY!!!!!) I wasn't thrilled about the Colazol but agreed to give it a shot. He kindly gave me 6 days worth of samples which made me feel some better about trying another pricey medication. I did growl when his answer to my complaints about the side effects of the various medications was "tell everyone to blame the Prednisone."
After the Visit

I started taking the Colazol and the increased dosage of 6-MP. I at first hesitated but figured I might as well. A few days into the Colazol, I realized it was doing what the Asacol did as well...making things worse. I called and tried to discuss this with the doctor but phone tag and all those nice screening methods at their office left me frustrated. I ended up telling a receptionist I was not going to take it any longer. Once I stopped taking it, things returned to the normal, cramping, diarrhea, blood, mucus but not constant and overwhelming. That felt like "normal."

Friday, February 28, 2003

The Colonoscopy

I wasn't surprised the doctor had ordered this test. Like I said, I had figured all of this out way back in December. I was a bit taken aback at how soon she wanted it done! I went home. I worked out leave from work. I went to have my last solid meal before the test at Waffle House. Clearly, that was the best meal to hold me for the better part of two days right?

Then off to the drugstore and the grocery store for special prep supplies! These are the the goodies from the drugstore. Of course, my local drugstore didn't have the nice all in one kit. Grocery store purchases were made...clear juices, gatorade (not red),ginger ale, jello. Those were the "foods" I was allowed to have the next day while I enjoyed the prep.

The next day dawned bright and early. Clear liquid day. Then midday...I get to start using all the nice stuff from the drug store. Phospho-Soda mixed with gingerale. The first swig isn't the time you get to finishing the bottle many hours later you are sure it is the worst stuff ever invented. Actually, that realization comes earlier. I followed the directions though. I spent more time than I want to admit in the bathroom. Fortunately, by the next morning I was running "clear" which is what they wanted as a I didn't have to use an enema to top off the phosphosoda and Dulcolax.

Very groggy, out of it and grouchy, I went to have the test done. More waiting. More history. Undress. Put on the special hospital nightgown. Wait some more. IV inserted. Wait some more. I get rolled down the hall and into this tiny room where my gi doctor and her assistant await. She makes friendly how are you doing small talk. I growl about the prep that tries to kill you off. She smiles and pats my head. Assistant starts administering the meds to put me under for the test. I ask her what on earth made her choose this line of doctoring. She laughed and said it was just one of those things.

Next she says, I am going to start inserting this as she does just that. YOUCH! That hurt. More than I figured such a thing would. I complain. More drugs and then more. Next thing I know I am in recovery. They handed me a coke. Then the doctor came and told us what she saw and had done. She said Ulcerative Colitis or Crohn's Disease. She had taken a biopsy and would get back to me. In the meantime, she made orders for a small bowel study. That is about all I remember of what she said and only that in bits. Thankfully, my girlfriend was there to listen to all of that. (even more thankfully she was sympathetic through the whole prep thing!)

Wednesday, February 26, 2003

My Ulcerative Colitis Story

The Beginning

I am not really sure where this begins actually. Does it begin during my first pregnancy when I started losing weight and having diarrhea? Probably not. That was fixed when they diagnosed my Grave's Disease and treated it with surgery. Does it begin after my second child was born? I complained of constipation at nearly every check up since then. My thyroid levels were checked and the subject was dropped. Did it really begin way back in college when I had a couple bloody stools, not repeated, not all that alarming, at least not enough to take a risk on a lot of tests I didn't have insurance to cover. All of those are possibilities of course. But the point where the trouble really started was September 2002.

That was a busy, stressful month. In the midst of it, I came down with what I passed off as the flu, stress, food poisoning, eating foods I usually don't, etc. In other words...diarrhea. An off and on fever and a feeling of general dragginess accompanied this mystery malaise. I figured once things calmed down I would be fine. It all continued. Some days good, some days not so good. Soon the not so good days outweighed the good ones with some serious lower tummy cramps and ache.

I was changing to new insurance though. Actually by the time I started thinking that this was not some temporary virus and I might should go to the doctor, I had already changed insurance. I found one thing, then another to stall.

In December, the cramps and diarrhea started being accompanied by blood. that definitely isn't all stress or virus. I poked around the internet. I ended up figuring I had ulcerative colitis with a visit to WebMD. I poked around a bit more on the internet and figured out that a doctor's visit to say the same thing would mean tests. Tests cost money. I then consulted my insurance and sure enough, it made more sense to wait until the New Year to go to the doctor. That way all the tests, visits, co-pays, etc would be in the same calendar year and add up to the same max for the year. Sensible? Right!

Wrong. Well, maybe. Instead I got to spend the month of December being sick and somewhat concerned about it. This managed to accumulate so on Christmas Eve, I was miserable and fairly sure I was going to die before Christmas morning. But, being me, I just kept doing everything I felt I had to do. Thankfully, Christmas morning brought some least enough so I could enjoy the day.

New Year's came. I stalled a little but finally made an appointment about this and for my long overdue physical. My new primary care doctor listened to my history and made the same preliminary diagnosis I did. She then referred me to the GI doc. But, she wanted stool samples and to do an in office "swab" in the meantime.

I went home. I called the GI doc's office. First available appointment is not until February 26. No problem for me. I am in no hurry to be told what I already know. I set about my collection for the stool sample. Lab at school was never this much fun. Ha ha. The GI doc also sent about 15 pages of paperwork to fill out before I saw her.

The long awaited day arrives. I went to the GI doc. Long wait to actually see her once I got to the office. I moderately recounted my story. I minimized this and that. This was before I had spent months discussing my bathroom habits with anyone, much less my doctor.

She was still concerned though. Very concerned. Next thing I know I am scheduled for a colonoscopy two days later. I nicely got to watch a video on the whole procedure before I left the office.