Surgery date changed to May 8th - Cat Forum : Cat Discussion Forums
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post #1 of 76 (permalink) Old 04-01-2008, 10:24 PM Thread Starter
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Surgery date changed to May 8th

This has been a long time coming and I am not as prepared as I thought I would be, even knowing all the information available. I knew that some patients never achieved a remission, but I hoped with each treatment my body would respond and give me relief from the constant battle. But, it looks like I am in that small percent of patients who are unresponsive to treatment and surgery is my only option. Hey, someone has to be the difficult case that Doctors can learn from, right?

I was diagnosed with Ulcerative Colitis in 2001. Each year has left me progressively worse, symptom-wise.
I appear to be unresponsive to treatment and major surgery is my only option for relief. If I do not have surgery the percentage for cancer risk rises sharply with every attack and episode I go through. After surgery, I will have NO chance of developing colon cancer.

I have seen more than a half dozen Doctors for this condition, most of whom are specialists. I am currently being treated by the Dept Head at Emory University Hospital and their top abdominal surgeon will be performing the surgery to remove my colon next month. Treatment for this disease is standard, with very few options in treatment available. There are drugs to take that attempt to regulate the colon muscles and lining. Then it progresses to steroid use to reduce the inflammation. If this is unsuccessful, then light chemotherapy (not as strong as cancer patients receive) drugs are tried. Intravenous Remicade is then tried and finally surgery to remove the offending organ.

Ulcerative Colitis is considered an auto-immune disorder. The Doctors really don’t know much about how the disease develops for each individual person. For some reason, the body thinks it must attack the colon as if it is a foreign body. If the meds do not work to reduce inflammation, then immuno-suppressants (steroids, chemo, remicade) are used to quell the body’s attack-mode in hopes it will forget what it was attacking and after 4-6yrs, the patient can be weaned off the meds and the body will have been essentially re-programmed and return to normal function. In a small percentage of patients, these methods do not work and they require surgery to remove the colon.

I have had very good results on high doses (60mg) of prednisone (steroid), but long-term use leaves the body with very bad side-effects. I was having great difficulty with excessive sweating and high blood pressure, in addition to a ravenous appetite with fast weight gain and water retention. Every time we lowered my dosage, my symptoms would return. We tried 6MP (mercaptopurine, a light chemo drug) and it had a mild, positive effect. When we doubled the dose I had fabulous results, but as the steroids were reduced, I developed jaundice. That was horrible and I thought I would die. We tried intravenous remicade, which has success treating the autoimmune inflammatory disease of rheumatoid arthritis, but I have had no appreciable results with my symptoms.

I decided two months ago, when I had a bad experience driving to my last remicade appointment, to go forward with the surgery. I have a final remicade appointment April 8th. I will have an MRI, pre-op and consultation with the surgeon on the 23rd, the day before our 15th Wedding Anniversary. We will meet with the surgeon to discuss the MRI and pre-op results on May 5th and I will have surgery on the 6th.
I will learn more about the procedure when I next meet with the surgeon, but I’ve been told I will be in the hospital for a minimum of 5 days post-op. My Mother is flying out to spend 3 weeks with us to care for me and our home while I am recuperating.

When I began seeing this specialist, I weighed 111# and looked awful. After a few months of steroids, I ballooned to 160# in less than 3 months. I have been off of steroids since December 2007 and have been steadily losing weight. I am currently at 126# and am afraid of losing more. The 6MP is making me nauseated every afternoon/evening and it is difficult to eat. What is good, is the surgeon won't have excess flesh to have to work around. What is bad, is I feel I won't have any reserves to fall back on while I am adjusting to the lack of a colon in regards to hydration and nutrition.

My biggest fear, is after having the surgery (irreversible) it won’t really change the problems I am having that keep me housebound. Just give me different problems that will keep me housebound. I just want to not be tied to the bathroom any longer. I want to drive my sportscar on short trips without cataloging bathrooms along my route. I want to ride my horse away from home. I want to actively play with the kitties. I want to be able to go places (restaurant, movies, friend's homes) with my husband and not have to suddenly excuse myself to get to a bathroom.
It has been a crappy ride, and I want to get off. I make jokes and laugh about it, because if I don't laugh, I'll cry. I'd much rather laugh!

Please wish me luck. Any advice about handling the fear of surgery and pain of recuperation will certainly be welcome.

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post #2 of 76 (permalink) Old 04-01-2008, 10:56 PM
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Bless you for caring enough about yourself to get this off your chest........finally! And, thank you for trusting us enough to help you through these next rough few steps. You seem to be a very strong person, and you will get through this. When you need to talk, we will be here to help, and I don't think there is one person on this forum who would ever turn you away if you just needed us to listen, while you talk it through.

I sincerely wish you the best, and I will pray that everything goes well with your surgery, so that you can finally get off this terrible ride you are on!

Q needs you..........the kitties need you...........your family needs you.........and we need you! We all need you, and hope you feel better soon!

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post #3 of 76 (permalink) Old 04-01-2008, 11:34 PM
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Heidi, as someone who suffers with chronic pain, I sympathize with you.
Two words to help deal with post-op pain: good meds.

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post #4 of 76 (permalink) Old 04-02-2008, 12:19 AM
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I'm sorry you are going through this.

Take as much pain medication as you can for the first two days - let your body start to heal. Then focus on getting up and around.
Even if you can't get up to walk very far, get up into the bedside chair as often as possible. It actually takes more energy to get out of bed and into the chair than it does to walk.
Wiggle your toes every time you think about it - keep the blood flowing.
Use the pillow for abdominal support to cough - if you can't cough, use the blow bottles every couple fo hours to keep the lungs clear.
Get the nurses to show you how to get out of bed the easy way - and listen to them.
Positive attitude. There is no way to overstate the importance of a good attitude. Expect to do well and you will.

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post #5 of 76 (permalink) Old 04-02-2008, 12:31 AM
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Ditto to everything "Mom of 4" said. Also, as someone who has gone through many surgeries, although none such as this, the one thing I can think of it "learn to laugh at yourself!" My situation isn't the same as yours but I've had embarrassing moments around other people and over the years I've learned to laugh at it. I can't change it so I've adapted to find the amusement in it. Otherwise, I might have cracked up years ago!

You know we're here to listen so be sure and talk when you need to. God bless you for opening up about all this. You'll be in my prayers.

Check your PMs. I did a little research of my own and found a pretty good link I think you might find helpful. {{{HUGS}}}
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post #6 of 76 (permalink) Old 04-02-2008, 12:40 AM
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Dear Heidi:

Just a word of support and encouragement on this - the hardest part is making decisions and second guessing yourself over and over, wondering whether its the right thing. I am sending a PM with maybe something helpful, too. Best wishes and prayers to you and your loved ones!

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post #7 of 76 (permalink) Old 04-02-2008, 01:38 AM
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Although I'm just repeating stuff already here and you know I have been through this kind of thing, it's always best to hear it from as many people as possible.
1. Take more pain relief than you think you need. If your feeling at all uncomfortable, then take something. You will soon know when you can reduce it. It took me 2 and a half months to come off mine totally.

2. Talk to people who have been through similar ops. See if there's a support group. As a previously massive sceptic of such things, I now know that it helps enormously.

3. Ignore people who say "you'll be fine". Sure they just want to put you at your ease, but unless they are experts in your particular situation, then they won't know about it. Know the risks, but don't dwell on them. Buy a relaxation cd to help (again something I used to be a sceptic of).

4. Never, under any circumstance, underestimate the skill and kindness of the surgeons, nurses, registrars and any other medical staff.

5. When you're in hospital, encourage people to visit you so that in the visiting hours, you are never alone. It may be different in US private healthcare but in my case, there were only 5 hours of visiting time. I needed all 5 to be filled for my day to be really good.

6. NEVER feel you shouldn't talk about this. We all have our crosses to bear, and we all deserve attention at some point. Don't feel embarrassed about needing this done. All surgery is serious, so when people tell you "oh well, I had open heart surgery, so you'll be fine", it's best to just humour them, and know in your heart what is true.

7. (Last one). It is perfectly fine to feel bloody scared, and cry a lot.

My thoughts are with you on this Heidi. Best of British!

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post #8 of 76 (permalink) Old 04-02-2008, 01:53 AM
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Hugh, that's probably the best advice and kindest post I've seen on this Forum.

Heidi, you already know you're braver than me for reasons I've shared with you. Your operation is such a risk, but with a huge potential reward. I simply can't say anything better or wiser than what's already been posted. We're here for you.

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post #9 of 76 (permalink) Old 04-02-2008, 02:04 AM
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I don't have any advice - I think most of it has been said anyway, but Good Luck and I'll be sending lots of good, healing thoughts your way

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post #10 of 76 (permalink) Old 04-02-2008, 06:13 AM
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Heidi, we are alll here for you as you go through this.

I wonder if you would consider Pming your address to people so that we can send cards, etc to you. As you recover you might not feel up to being at the computer, and this way we could keep in touch with you.

You are a wonderfully strong woman, I hope that this surgery provides you with relief you so desperately need.


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