New problems?

August 3, 2012

I’ve been dealing with a whole new buttload of issues lately due to my wonderful immune system. I am almost dealing with this worse than my past bowel problems, because this is a very different kind of pain. I’m no longer a prisoner of the bathroom, but I feel like I am a prisoner of the house, of the bed, of a pain that keeps me from being able to sit/stand/walk like a normal me should be able to. Not to mention the other feelings of weakness, malaise, and general uselessness.

First of all, my proctectomy STILL hasn’t healed. Not one bit. It might even be worse now. I don’t know. All I know is that I feel like all of these new doctors that I’ve been pawned off on don’t care as much and are jerking me around making me wait a ridiculous amount of time to get this sorted out. I had my first consult with a plastic surgeon on April 26th. He wanted me to have a quick checkup with a colorectal surgeon that he works with and told me that he wanted to hurry the process up for me, but I couldn’t get an appointment with that surgeon until June 11th. I called the plastic surgeon multiple times for help getting a sooner appointment and heard nothing, so I was forced to deal with it. The colorectal surgeon seemed nice, and he ordered an extensive pelvic MRI (which probably should have been ordered a lot sooner) and told me that my surgery would get scheduled and I should see the plastic surgeon again. I called after a while to get my surgery date and they said, “No, we can’t schedule you until you see the plastic surgeon again.” Okay… So I get my MRI and see him again July 12th. He says he’ll try to get me into the operating room before the end of July even though he’s busy, but he still hasn’t completed the PAPERWORK to even try to start scheduling me.

He also gave me a hard time for asking for percocet for a two painful, open, draining ass wounds when I’ve basically been poisoning myself with high dosages of ibuprofen that don’t take away my pain, even though I keep enduring the same or more pain for months and months without being fixed. AND he only gave me 30 tablets with one refill on the prescription, but the pharmacy does not honor refills on percocet, and I have been struggling a month later to get him to write me a prescription so I can get something he already authorized when the original prescription only should have lasted me a week. I’ve had to ration taking pills and feeling okay. That’s just not right.

On top of all this pre-existing bullcrap, I’ve got even more to deal with now. A very painful crop of ulcers have appeared on my labia, LIKE I NEEDED MORE PAIN DOWN THERE!!!, and it hurts even more to walk/sit/stand and burns like hell to pee. I visited my gynecologist who scared me into thinking I had a herpes infection that would never die, but the cultures and bloodwork for both herpes simplex viruses came back negative. That means it is very possible that I have a rare disease called Behcet’s disease which could end up being pretty serious. It is another autoimmune disease that attacks the blood vessels, but not much is known about it, and there is no clear cut test to find out if I have it.

I’ve been reading up on Behcet’s, and I seem to have a good amount of symptoms. I have the genital ulcers, some leg lesions, joint pain, and I had some strange eye lesions that my ophthalmologist dismissed as a random “hypersensitivity to microorganisms” but not necessarily an infection. The only typical thing I’m not really dealing with right now is mouth ulcers, but I had a pretty bad bout of them last summer. Most of these things, I had just automatically attributed to Crohn’s and overlooked, but now I don’t know. Unfortunately, I can’t get an appointment with the vasculitis center until I am able to get all related medical records sent there plus a referral letter; even then, they have to review my case and decide if they are going to see me. Even THEN, I am told that I can’t really be treated with prednisone right now due to my infected, non-healing wound. Vicious circle of BLAH.

The only other news is that I had my first blowout ever, over 2 years after ileostomy surgery. Not bad. I am pretty sure it’s because I didn’t change my appliance for like…17 days (exaggerated, but not by much) and then ate McDonald’s. I felt a sudden pain in my skin (like adhesive ripping off) while in the car, sat around for 15-20 minutes, and went to the bathroom when I got home. I didn’t even realized it had blown out the side of my wafer, until I physically looked at it. I was like, “Why are things wet?” But yeah, I’ve been neglecting changing things often enough, because of all the crap I’m going through.

I guess that’s enough bitching for now. Please, please, please make this over with soon.

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Christ.

December 19, 2011

Just FYI, last night’s packing change was a NIGHTMARE. It was soooo painful. There wasn’t any bleeding or anything, but it was probably some of the worst pain I’ve ever felt in my life. I had to tell Rob to stop. I could not tolerate it at all. I literally sobbed after it was finished, and I’ve always thought myself to have a high pain tolerance.

Today, Rob got off the hook, because I had a follow-up appointment with my doctor and she changed the packing. Not as bad as last night, but still very painful. I was very tense and nervous the entire time. She also removed the drain which was no big deal in comparison.

Anyway, I got her to write me a prescription for a stronger pain medication. The percocet just was not cutting it, so she wrote me a prescription for dilaudid. I’m hoping that this helps a lot more, because I do NOT want to go through another packing change like that. Ever.

No More Medication!

August 11, 2010

Finally! I’m officially medication free!

I was able to stop taking most of my Crohn’s medications immediately after I had my surgery. Prednisone, however, is not a medication that you can just quit cold turkey. There is a long, annoying process in which you have to slowly taper down the dosage. In the past, I was on doses as high as 60mg a day; you can only taper 5mg to 10mg a week (sometimes much slower, and the really slow taper comes after you hit 10mg a day), so even once you are “finished” taking the steroids and switch to a different medication, you still have to be on them and deal with the nasty side effects for months afterward.

I am just happy to no longer have to take any pills! I have been taking pills for over 10 years of my life, starting when I was only 12 years old. Sometimes I was on four or five different medications. Some of those medications required me to take three or four pills every eight hours. Sometimes it was pills, sometimes it was an enema, sometimes it was a trip to the hospital for a few-hour- long IV infusion, sometimes it was an injection I did myself at home, and sometimes I needed a home nurse to give me an injection. It really builds up. It really does get exhausting after a while even though it seems like such a menial task.

I’m sure my body will be happy to not have a ton of chemicals pumped into it. A lot of my medications had horrible side effects. The IV infusions of remicade were a blessing to me, but it was still full of nasty things that could cause cancer and who knows what else. It’s like I was destroying all of my other organs to try to save my colon, when there really was no saving it to begin with.

Of course, I am still taking a daily multivitamin and an iron supplement. But it’s not a requirement. I won’t feel like my stomach is going to implode if I miss a dose. It’s helping not hurting. It’s something “normal” people do.

This feels clean. It feels liberating. Hopefully, there will never, ever be any other circumstance that would require me to take prednisone. I hope you never have to deal with it either.