(might be a tad bit long)
Maybe there are others out there with a similiar story or maybe my story will help or encourage or enlighten or grosse out - hopefully not. But I do go into detail in some areas, please be warned if you are queasy tummied!! :)
My story begins in January, but I do have to say that I had a feeling of unwell ever since before Christmas.
Anyways in later January I just started to feel exhausted all the time, as well as unwell. I had cramps more than usual - which I was chopping up to my period playing games on me again - (I should say I have always had inconsistent periods). And the bathroom was becoming me relief. As you can tell from my previous blog post, I thought I had a touch of the flu without puking.
I struggled along for a few days and had a few days of not so bad, then things just got horrible. I couldn't eleviate the cramping pain, and the diarrhea was getting worse. I tried heat pads, hot baths, and was taking pain meds every 4 hours on the dot.
Then one night I just couldn't stand it anymore, I got out of the tub and asked hubby to take me to emergency. It was about 4am. While he was getting the kids up, I started puking. Basically from that point on I only remember puking, pain, diarrhea, pain, IV's, and pain.
I heard words like doctors, tests, blood, stool, meds, and so on. But didn't make any sense of them.
Basically the first week I spent in the hospital I don't remember much.
Once they diagnosed me I heard more words like Crohn's, and Ulcerative Colitis and Remacaid, and steriods and IV's, but still things weren't making sense.
I guess it was once all the medications started and the pain meds were lessened that I started to wake up and make sense, somewhat, of what was going on.
I was in the hospital, had been for just over a week and I had 2 diseases that were wreaking havoc on my GI system. Great, put me back out please. lol
While they were diagnosing me, I had many different tests and doctors and I had my appendix out. At first they said they took it as a precaution, but then said they were glad they did as it was all diseased too and would of had to come out anyways.
They started bringing in information, some in pamphlet form and LOTS in just doctor words. I tried to soak up what I could, but it just felt lost on me. I am so thankful my loving husband was at my side almost the entire time to soak up what I just couldn't. He then patiently took the time to explain to me what was going on little by little. I was not staying awake for long, and I couldn't concentrate for long.
I had 2 diseases, which is a bit rare, usually you get one or the other. And I presented with what they called a sudden onset of them. I was going to the bathroom all the time and there was lots of blood and diarrhea. They showed me a picture of one of the tests they had done and I couldn't beleive the amount of ulcers I had! No wonder I was in so much pain. One doctor put it this way: It is like someone took out your intestines, blow torched them for a bit, rolled them back up and put it all neatly back inside you.
Oh that sounds lovely! NOT!!! That is what we are trying to heal now. And it was going to take some pretty powerful medication that they are trying to get funding for from the government right now. It is called Remecaid and cost $3000.00 for each dose! OIY!
So my days in the hospital went like this:
7am - wake up blood tests, then usually Dr. Caustons resident doctor would come in and do a check up on me, listen to this, push here, ask this and so on. Then my family doctor would come in and check up on me. Then breakfast would arrive, as well as my student nurse and her super excited get to work with real patient attitude, with more tests to do. Blood pressure, temps, lungs, check this check that, okay you can eat now. Oh wait here are your 5 pills and more IV meds! After breakfast, Dr Causton would come in and check up on me, take a look a tummy, ask questions and give more info with eager beaver student nurses just waiting for instructions. I was sent for x-rays some days too. Then Dr Vivien would check in on me, he is the big wig on the diseases. He would ask questions, change this, add that and give me more info too. Lunch would arrive, as well as more pills and more IV meds and then it was time for more student nurse happy go lucky tests! lol I don't mean to sound bad, but I was in no way happy go lucky like them and some just about drove me insane. I know they need to learn and most did a great job. Some tried to insist on sponge bathing me, but I put my foot down and let them know only hubby was sponge bathing me thank you very much!
Anyways, after lunch I usually got in a little nap, then was helped to do a little walking then more resting. Soon dinner arrived and more pills and changing of IVs and more student nurse tests, and more rest. Sometimes a doctor would come back to check on me.
I also had lots of visitors. Almost every morning afternoon and evening was filled with visitors. I loved it when they were there letting me know what was going on in the outside world and if I had a visitor, most of the student nurses stayed away! lol
My food for the first while was clear fluid: apple juice or cranberry, tea and jello.
Then I went to full fluid: juice, cream soups, broths, ice cream, milk and tea.
Then on the last 3 or so days there, they bumped me up to soft foods: mashed potatoes, mushy pork or chicken, mushy carrots tea juice milk pudding.
Hospital food, yummy NOT! lol
Apparently I have weak viens, cause I had to have my IV changed a few times as they kept falling out. And it was very hard to get a vien when they were trying. My arms were so marked up, bruised and ugly I looked like a serious druggie!! Those marks are just finally about gone.
I got approved for the Remecaid and the procedure began. It was a big deal with bags being changed often, blood pressure and temps being checked every half hour... I think it took 3 - 4 hours for this to be done. Even though I was just laying there, it was very tiring.
I am pretty sure this medication is doing its job, slowly, but surely. After the first dose, maybe the next day or so was when I told the docs I wanted to try food. I was tired of fluids. And from that point on I started to improve. Now I won't say heal, but at least be able concentrate, want to eat, want to walk, and desperatly want out of the hospital. I felt I could do my sitting and staring at walls at home. But I had to wait. I think it was 3 days later I finally got news I might be released.
Once I got home I thought everything will be better. I had the super drug, I am home I will heal fast now! aaahh no. I was shocked at how much weight I had lost. How much strength I had lost and how it was not coming back very well.
You see these diseases are fighting my body, almost making healing immpossible. The inflammation has stripped my instines of their lining. That lining is what is needed to absorb the nutrients and liquids our bodies need. That part is Crohn's I believe. So basically the food goes in and maybe 15 - 20% is getting absorbed and the food goes out, pretty quickly. Then the Ulcerative Colitis part is my colon is filled with ulcers, making passing anything extremely painful. Both cause massive inflammation and pain, but I think the UC is most painful.
So to help me get the most out of my diet with the least amount of pain and discomfort I have to eat food that are in the simplest forms, but enriched with needed vitamins and minerals and other stuff.
I am to consider myself lactose intolerant during flare ups. I might not be, but milk and dairy products could pose problems so it is easier to just cut it out. So that means Soya milk - boy is that expensive! In cereal it doesn't bother me, but to have a glass of it, yeah not so much. Problem is I need calcium and lots of it, so I drink it.
I need to stay away from almost all fruits, veggies, nuts and seeds. I am unable to digest these in raw forms and seeds and skins can cause serious pain. I can drink juices, just need to drink real juice with added calcium and vitamins. So cranberry, apple, fortified orange juice with no pulp.
I have to eat white breads and pastas only. I need stay away from Fiber.
I can have potatoes as long as they are cooked well and no skins.
I have to take multi vitamins, gas pills, and a protein shake that has added Vitamin D Vitamin B12 and as much calcium as possible.
To help with diarrhea I am to eat gellatin products, and eat pretzels and plain potato chips. Apparently they help to 'thicken' you up.
I can eat chicken eggs pork turkey and tuna, but limit red meats.
I can't have ice cream and I can't have cheese!
I have also found out bananas are terrible with me and so is caffeine. So I have gone to decaf coffee and you know what it is okay. After being in the hospital without it for so long I guess I detoxed.
I have a wonderful friend that is coming and doing a Reiki massage once a week as well, it is a calm practical healing method to decrease strain, ease pain, and help cure. I always feel so rested afterwards.
I keep a daily food journal and write down everything I eat so that I can see what may have affected me.
The diet and eating aren't so bad. I don't mind eating and taking what I have to. It's just hard how much more expensive some of the this stuff is, especially when I am not absorbing it all. It's like dumping it down the toilette, literally!
The steriods I am on are giving me a side effect known as 'moon face'. My face is very very round and fat. My cheeks are so fat that I constantly bite them and have mouth sores. And the inside is constantly peeling. joy joy! And as the doctor slowly decreases the steriods there are all kinds of other complications that could arise. One we have seen so far was the massive joint pains. The pain was so bad I had to go back to the hospital. OIY! Another side effect is my skin is itchy and feels like 'glass'.
And through all this, my strength is not returning. I cannot go up and down stairs without help. I need a walker to help carry stuff to the table. I cannot get up if I am on the floor. I am a very nervous walker, as I think my hips and knees are going to give out. I look like a little old lady wannabe! How sad is that! lol
I am not driving yet. I have attempted to do dishes a few times, I just do a little at time. And I have started to help cook. Fortunatly for my family we have been blessed with so much help. Almost every night since I have been home from the hospital, someone has come by with dinner for my family. And we have had others just fill our freezers, cookie jars and counters.
We truly are blessed with wonderful family and friends.
I just keep thinking that sooner or later I will enter a remmission. That is the blessing part of this disease. I will come out of it. Might not be for long, but I will get 'breaks' if you will. During those breaks, I might be as normal as I used to be, or I might have a few things to be careful of, but I won't be weak, and in so much pain. That is my motivation for being okay with just sitting here and staring at TV now.
There is no 'cure' as they are still learning so much about these diseases. I think they have only been known about since the early 1930's.
As of today right now, I am feeling a bit better than I have. I 'think' I am gaining some weight, but we don't have a scale in the house to check. I have had a second dose of Remecaid and have 2 - 3 more coming up. All depends on how I am healing. I just try to keep being as positive as possible. My heart and most other organs work just fine, I can breathe and I am home.
Oh one other thing I wanted to mention; these diseases effect each person in different ways. Which makes it hard for new patients, as they have to just grapple and figure out what works for them. The symptoms could be different as well.
And there is a big difference between IBD - Irritable Bowel Disease - like Crohns and Colitis and IBS - Irritable Bowel Syndrome.
According to my book; IBD has harmful physical effects like inflammation, ulcers and so on. But IBS has no physical effects, it is mainly just stress related or maybe allergy related.
I can say that since being diagnosed, I have learned there are so many others out there that have similiar stories. I am hearing of others who have the disease. Some took years to diagnose.
I have learned to be more patient, I have learned to rest and know that it is okay to rest. I have learned I had myself stretched WAY to thin. I need to slow down, say no and spend more time with family. I have become stronger in my faith and that God is good and does have a plan for me. Even though I might not understand that right now. I have learned my husbands love for me is very deep and very committed. I know I can count on him, lean on him. I have learned my kids love me, but they are pretty capable little men. They need me, but maybe not so much as I insist they do.
If I am feeling well enough, tomorrow night the girls are getting together at a coffee shop. I am really looking forward to my first, non doctor/hospital, 'me outing'. I feel great just thinking about it.
If you read through all that, you are a trooper. Thank you for sharing my story with me. Please feel free to leave comments or questions. I would love to hear from you.
And I can't leave you without a picture. Excuse the bit of fuzziness. I took this the other day, forgot how heavy my camera was! I was a bit shakey. But I like it. It is my backyard after the recent snowfall, which is gone already.
