Tuesday, May 22, 2007

Crohn's Disease


Well how's that for a topic? For the past 9 or so (maybe more) years I have been having recurring problems with my intestinal tract and my eyes. The problem with my eyes was diagnosed as iritis and it would flair up on occasion and send me scurrying to my opthamologist for the necessary treatments (generally steroid drops).

My intestinal problems turned into a medical chart of epic proportions. One of the first doctors who treated me pretty much figured it was all in my head. Why? Because I'm female? Who knows, all I know is he referred me to a psychologist who based on the questions he asked seemed to think my sex life had something to do with my stomach issues.

Skipping ahead a little, one day my ankles were swollen beyond belief so I went in to have them looked at. After a swivel or two the same doctor who sent me to the shrink pronouced it arthritis and put me on Voltaren. BIG MISTAKE. I wound up in Urgent Care the next day with every joint in my body swollen. I moved at a snails pace. Once they got me inside and did the preliminary questions they asked me if I could stay to see the rheumotologist. Where else was I going? This doctor turned out to be sent from heaven. Not only did he get pissed off at the misdiagnosis (no I DON'T have arthritis) but after glancing at my two ton medical chart he asked what else was wrong. Upon telling him about my stomach issues he wrote a prescription for Pepcid. I swear to you the next day after I took it, the relief was almost immediate. I promptly made him my primary physician.

So skip ahead to 2004. In between I had the recurring iritis issues and some stomach spells, but nothing really bad. I moved from Los Angeles to Michigan. Big change. BIG CHANGE. A welcome change, one I wanted more than anything. I was tired of the city, the noise, the smog, the people, the concrete, hunting for parking, the hour long 12 mile drive to work on the freeway. It was time for blue skies, green grass and actual seasons again. The first year I got here, I was in heaven. I still am, but around mid-2005 the stomach problems started to creep up again. I wrote it off to stress from starting a new business venture. But it kept getting worse. Between working to get the farm ready for our business (raising chickens for meat and eggs and turkeys) I dropped 40 pounds. I was a big girl when I came here (277.5) so losing the weight was a very happy and good thing.

However, as my stomach ailments increased the weight began to melt away. Some people might think that is a good thing, but not when you lose 100 pounds in the course of a year because you cannot eat. It hurt so much that at one point eating was a chore and I didn't want to do it. I spent more time running to the bathroom and in the bathroom than I did working.

Now leaving a steady paying job to raise chickens also left me without medical insurance. No insurance, no visits to the doctor. After locating a local health plan I was placed on the waiting list. Once an opening came up I went in, completed the paperwork and was immediately sent to a doctor. By this time I had lost 120 pounds total.

My new doctor and her staff have been wonderful. Not having insurance is rough. Some things were covered on the plan and some things weren't (like hospitalization costs). In order to have the hospitalization covered I had to apply for another plan which I am very grateful to have been approved for and the hospital is picking up most, if not all, of any hospitalization costs.

Anyway, one ultrasound later I was referred for a colonoscopy. I was originally told I couldn't get in to see the doctor until July (this was in February). As my protein, iron and sodium numbers were steadily dropping my primary physician's office went a little nuts and after some demands got me in earlier.

Earlier turned out to be May 7 after a CAT scan to clarify some of the ultrasound pictures. I met with the doctor for the initial visit and the second I mentioned iritis he said "Has anyone ever said the words Crohn's Disease to you?" Well no, never. It turns out Crohn's can be a direct cause of iritis. He was baffled that no one had ever put the two together. After hearing that, so was I. He was pretty sure that's what I had, but he wanted the colonoscopy to verify it.

Enter into a bit of a nightmare. I was warned about the pre-cleansing, that it would be pretty horrible. And they were right. Boy were they right. I checked in to the clinic at 7:30am on May 7th, put on the backwards gown, had the blood pressure and pulse checked. The IV line was inserted (I can't begin to tell you how much I hate having needles of any kind poked into me, but how much I really HATE HAVING THEM POKED INTO MY HAND!!!) and I waited patiently to be rolled in for the procedure. About an hour later, I went in and all I remember is watching the nurse administer the first dose of sedative and that was all she wrote. No counting backwards or anything, just sweet oblivion.

The aftermath was anything but sweet. My colon was so swollen that they had to give me multiple doses of sedative to keep my out. When they rolled me into recovery, my partner and very good friend was told that I wouldn't be giving him any trouble today because they really had to knock me out. Good thing he was there because I vaguely remember seeing the doctor talk but I don't remember a word he was saying. I was told he said he didn't need to wait for biopsies to confirm that it was Crohn's and wrote me out two prescriptions. I got dressed, had a couple of Lorna Doone's and half a glass of juice and headed out the door. I then proceeded to throw up the entire trip home and afterwards.

During the colonoscopy they will use a little air to inflate the colon to enable the probe to move about more freely. They tell you there may be some cramping because of this but the air will pass. My colon was so irritated that they had to use extra. It was no joy ride, the pain was excruciating. So between worshipping the porcelain god, I had massive attacks of cramping and gas from the air leaving the area. At some point I managed to crawl into bed and pass out.

Only to wake up the next day feeling like I was on fire. Turns out I was. I had a temperature of 103.4. After a call into my doctor I left a message with the nurse and my partner was busy hosing me down with damp rags and ice to try and get the temp down. I missed the doctors call later that day because I was once again out of it in bed. When I woke up the next morning, the fever had broken and I and the bed were drenched in sweat. This is gross, but it was the most awful smell as well. Something wasn't right. I spoke to the doctor finally and he explained that the throwing up and high temperature came from the extra amounts of sedatives they had to give me. I wasn't up and running for a good 4 days. He asked me if I remembered any of the procedure and when I said no, he very quickly said "that's good!" It must have been a doozy is all I can say. I think every toxin in my body was released when that fever broke. I was having some trouble turning my head from side to side before (once again I was thinking stress related) but now I can darn near swivel it like an owl with no pain. Not to mention I haven't had a single Tylenol since the procedure. Like I said, some bad toxins must have been released.

I am now on a regimen of Prednisone and Asacol to treat the inflammation. I'm on my second week of the meds and the past two days have been the first where I feel like I'm finally firing on all pistons. My intestinal tract has greatly calmed down, but it's only the second week so i've still got a long way to go. There are days when I wake up perky and ready to go and then deflate like a balloon half way through the day.

Since the diagnosis I have met quite a few people who have the same disease. It's actually been really uplifiting to know that I'm haven't been losing my mind and I'm not the only one. One of my customers referred me to a wonderul lady who almost lost her life to this disease because they didn't diagnosis it properly and they have both steered me towards drinking kefir as part of my treatment to get the bacteria in my system back up to where they should be. I drank my first kefir smoothie (with berries, banana and honey) last night and despite my previous aversion to milk products because of the insuing gas and pain, I had no issues whatsover with the kefir. I make my own using the "grain" the customer gave me.

I was also referred to a book called "Breaking the Vicious Cycle - Intestinal Health through Diet" by Elaine Gottschall which gives you a diet to follow to get the Crohn's and other intestinal diseases under control. It arrived today (thanks Amazon!) and I'll be reading it thoroughly. It does call for eating homemade yogurt (again to get your healthy bacteria back up) so I'll be looking forward to that as well.

Basically it's all about eating clean, fresh foods. No additives, no preservatives, no MSG, etc. I had cut a lot of that out on my own trying to doctor myself. Now I'm going to be even stricter with it.

Needless to say, while I'm finally very happy to have a name to the condition I have, I still have the fears of having to live with this. There is no known cure. All you can do is try to bring it into remission and keep it there. Steroids are nasty little suckers that have their own set of problems tacked on (like the moon face I'm developing, possible cataracs, glaucoma, etc.) so you can't be on them forever. Not to mention my other med has a copay of $200 a refill. I've applied to the manufacturer to try to get that one at a lower cost or for free. I'm hoping like crazy to be accepted to the program. Right now I have a box full of samples from the doctor to get me through for the time being.

My weight right now is 132.5. That's up 4 pounds since the colonoscopy. I dropped 9 doing the cleansing for an all time low of 128.5. Which would bring my total weight loss to 149 pounds. I don't recommend it as a method to lose weight. Now my goal is to get some weight on. Being able to count your ribs is not fun. All those times I wanted to lose weight. Now I have and I'm miserable. I'm hoping to get up to about 150 (I'm 5' 10 1/2" with a smallish frame) I'm finally getting my appetite back so hopefully the weight will follow.

Whew, this has been some post, so I'm going to wrap it up. I know this has nothing to do with crafting, but in a way it does because dealing with this has put a serious damper on my creativity for pretty much the past year and half. Now that I know what I'm dealing with I'm feeling the juices start to turn again and will be getting back to work. I need to reduce stress levels so crafting will be my way to do it.

If anyone out there reads this and has Crohn's Disease and would like to share and/or commiserate with me, please feel free to drop me an email. Thanks for working your way through this post if you did. I hope I haven't bored anyone silly or grossed anyone out. It really helps to get it out of my head and that's what blogs are for!

1 comment:

  1. Crohn's rots. But, a diagnosis is the first step in feeling better. I hope things go well.