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frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 9/28/2009 9:05 PM (GMT -7)   
How are your hemorroids today? Are you feeling better? Did you get the shower sprayer or the ointment yet? I hope the itching is getting better for you and i hope you feeling good today. :)

 Crohn's anal fistula Lupus Hyperthyroid..Pentasa Remicade

 


NostraHistoria
Regular Member


Date Joined Nov 2008
Total Posts : 351
   Posted 10/6/2009 8:33 PM (GMT -7)   
Frogeleita,

Thanks for your response. It was really nice of you.

Sorry for not getting back to you earlier. Let me tell you why. These last 2 weeks are probably the weirdest of my life. Last Monday, I go and see the high-ranking colorectal surgeon and he tells me if the antibiotics (Flagyl and the other one was like Linoselazin or something, I could not get it because only an Infectious Disease doctor can give it) do not work to clear up the abscess, then I can have a laprascopy. They could not give me a regular surgery because the radiologist said the abscess is in a bad spot in the abscess.

So, then on Tuesday, I go and see a new GI. I tell her that I am supposed to go back to school to Europe that day. I had the flight ticket and everything. She tells me my CT scan is horrible and sends me to the ER to get the culture of the abscess. So, I got into the clinic on Tuesday at around 1:00 PM and then I am admitted into the ER at around 2:00 AM on Wednesday, then wait in the ER for a room until 9:00 AM Thursday. The GI group said they cannot start me on Humira because the abscess can get worse. So, I get another CT scan. It shows the abscess is smaller. In the hospital, the colorectal surgeon and the primary care doctor said that I need a colectomy (!!!!!). I was just diagnosed in 2005. I do not have a bad case at all. It is just that the abscess has to go and that can only be done with a colectomy. While I was in the hospital, I had to give stool samples. When I had a BM in the hospital, the hat was filled with so much clotted blood. I had no idea that was coming out. It was sickening to see it. It was so thick. After 2 days of Rowasa , it stopped. I was shocked.

Today, I had a colonoscopy. Beforehand, I was told that the worst part of my disease was the rectum. When the colonoscopy started, he said it was not that bad, but they had to stop the scope when he saw bad inflammation. I think he was scared of perforation. I was really happy when he said it was not that bad, but then I read the discharge notes and it said that the procedure was stopped early. They found an abscess. There was some number next to it, like 530.9 or so. Not sure what that is. They said there was severe erythema. Not sure on that either. After the exam, the colorectal surgeon was there and said what options I have. Either way it is an ostomy. I am going to have a barium enema inserted through my bottom. If the abscess lights up, they can start Humira. If not, then it is surgery. Humira can help the abscess, I think is what I heard. Not sure. I was drugged up. She told me that it would be my choice on what to do. When she spoke, I felt better. The male colorectal surgeon just depressed me bad when I heard there will be an operation.

Now, the question is whether to have a colectomy with an ileostomy or go on Humira and hope for the best. If Humira does not clear up the abscess, then it would be surgery. The thing is that the operation would be free. Later on, say a few years from now, I would probably be paying for it. Plus, these doctors I have now are really, really nice. I trust them. My old GI was such a prick. He was concerned more about money than me.

I am going to go to the GI next week and maybe I will have more info on what they found in the colonoscopy.

I think I might have to make a poll here in the future to ask whether to have a surgery or not. I have UC or Crohn's on the left side up to 35cm, but when I start hurting, my whole abdomen hurts. Not sure if the small intestines are involved. The whole decision is big. The main thing for me is wearing a pouch because I like to walk around the house without a shirt and the possibility that I would have to use meds if the other parts of the intestine are affected. Too bad they stopped the test so early. It would have made my decision a lot easier.

BTW, how are you doing? Are you in remission? Honestly, If I was off Entocort right now, i would consider this remission, but when I get off it, it hurts.
27m - Dx January 2005: UC/Crohn's
Entocort 9 mg, Zosyn IV 4.5g x 3, Flucanozole 200mg, Asacol 4 x 3


NostraHistoria
Regular Member


Date Joined Nov 2008
Total Posts : 351
   Posted 10/9/2009 7:50 PM (GMT -7)   
Frogeleita,

Hi. Sorry again for getting back to you so late. I am having problems with fatigue. I am just tired most of the day. I try to do things, but in the end I just want to sleep. Plus, I have all sorts of doctor appointments.

The GI called and said that she was going to start me on the meds. I guess Humira. I will see. They did not want to start me on it before because it would suppress my immune system and could make the infection worse. The surgeon cannot drain or remove it because it is in a bad spot according to the radiologist.

How are your fistulae? Do they hurt? Are fistulae serious? The primary care doctor told me that I had 2. During the colonoscopy, the GI said I had a fistula when the colonoscope was still outside and not inserted. I never had one before. I do not know much about it.

Where is your fistula? Is it really bad? Does it hurt? I might have to do some research into this after I talk to the GI.

I do not know about your fissures. Where are your's? The colorectal surgeon and GI thought I might have one, but that was about a month ago. Who knows? There was one week when just about everyday some doctor said UC and then the next said I had Crohn's. Oh, well. I feel fine and normal except for the fatigue. If I was in school, this would be really hard to get through. I might have to get my old blood tests and get to a good doctor to help me out with this. I have anemia. My Hemoglobin is around 10.5 normally. It dropped recently, but I think it could get higher. When I was in the hospital and they gave me a hat for the c. diff test, I saw just how bad the blood was. When I was transferring the specimen to the little bottle, the blood was thick like jelly. There was probably a cup of it in one hat. I wanted to throw up when I was transferring some of it to the bottle because it was so thick. It would literally not drop into the bottle. I could not get a piece of it because it was so clotted. I hope I never have to see that again.

This whole thing with the abscess being in bad position is a pretty lame excuse to remove my colon. They want a partial colectomy. They said that they could not connect the unaffected part of the colon to the rectum because it was inflamed, but when I was having the colonoscopy, the head GI was shocked and said that it was not that bad. After the colonoscope was inserted, I closed my eyes. Then I started watching, and the tissue was yellow. I guess it was ok. But then as soon as they saw bright red tissue, they stopped the exam. They said before that they were scared of perforation. I do not know where the abscess is exactly located, but I think they passed over it without a problem, or else they probably would not start Humira. I will see on that next week.

Honestly, the fatigue is the biggest thing that is bothering me right now. If I was not tired, I would say I would be close to remission. The primary care doctor thinks I have moderate case. I do not think I need some serious treatment.

Are you hurting? I hope not. If you are, is the pain constant? I see you use Pentasa? I tried it, and I did not like it because it would begin to break up in my mouth. I have 35cm of inflammation on my left side from my anus. I thought it would not reach there. I like Asacol the best.

Are you outside the US? I think you might be cause Asacol seems like the drug that GIs give here.

Well, thanks for your response. I hope everything is going to resolve itself and that you have good insurance. I am wondering now how it will be when I finish school and try to buy insurance. That whole pre-existing condition clause is making me wonder. Oh, well. We will see. If not, then CCH is my place to be. I like the doctors there a lot anyway though.
27m - Dx January 2005: UC/Crohn's
Entocort 9 mg, Asacol 4 x 3, Flagyl 500mg x 3


NostraHistoria
Regular Member


Date Joined Nov 2008
Total Posts : 351
   Posted 10/15/2009 6:15 PM (GMT -7)   
Hi,

I am ok. How are you? I am not hurting, but on Saturday I ate some cereal...forgot the name. It is packed with iron and lots of nutrition. I felt bad for a few days after that. Not sure if it was because of it. I took it to improve my blood count. I have Ferosol, but I think it makes me break out. I had too many things when I was in the hospital to know which one did it.

The Humira is going to get started as soon as I get it. I faxed them the application last Saturday. Not sure on that. The thing I am worried about is that the abscess will become septic and I will have an emergency colectomy. Plus, I have an area on the outside that is pretty painful. I hope it is not another abscess, because it would just delay Humira. It hurts so much. It just came about the last few days. For 2 days the whole area was irritated and bothersome. Then, today, I can sort of feel it out. It seems circular. I took a pic, but it is not red. It hurts so much. I have to sit at an angle so it does not hurt as much. I have an appointment with the colorectal surgeon next Thursday. I hope it is gone by then.

I have 1 or more fistulae. When I had the colonoscopy and the colonoscope was still outside and looking at my anus, the GI said it was a fistula. Could the fistula be causing this pain? I do not know much about them. The pain is away from my anus though, in between my anus and my testicle on the left cheek. If it was not for that, I would be really happy right now because I am going to start a new drug. Sucks. When I saw my GI, she just wanted to talk to me about Humira. So, I did not get a chance to show her about. Or maybe she does not like giving guys rectal exams. Who knows.

So, you are having surgery in the next few days. I hope it goes well. After reading about that model who had Crohn's and a surgery that went wrong, I am scared of surgery. Hopefully I will not need it.

You should probably just pray the next few days. I will pray for you and everyone else with CD
27m - Dx January 2005: UC/Crohn's
Entocort 9 mg, Asacol 4 x 3, Flagyl 500mg x 3

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