Hello, I haven't been on in a while because I have been having problems with my last GI doctor who didn't want to see me anymore because I was to scared to start remicaid. He never did a colonoscopy or anything and just seemed like he wanted to just to do what ever he wanted. I was on entocort EC for a little over a year but since I haven't had a doctor since October I had to taper off. I'm not really sure if it was helping anyway because I have had diarreah for over 2 years now and even while on the entocort i would still have it, I would have a few ok days where it wasn't watery D but then I would have watery D again. I haven't had a formed stool in almost 3 years when I got off the Depo shot (a birth control) and put the IUD in.
about a year ago I had a cyst and went to the emergency room, they told me that it appeared to be a bartholin cyst (which is on the lip of the vagina, sorry for to much info). I was told to go home and soak on and off. It became bigger and I was in more pain so I went back to the emergency room. A different GYN doctor saw me and was a ittle confused if it was actually a bartholin cyst or I guess a cyst from the crohn's. He said because I had 8 kids and it was so narrow between the rectum and vagina that he didn't want to drain it because it could cause problems so he sent me home and told me to soak it also. The next day it finally drained on it's own and I felt much better. After some weeks I started to notice when I would pass gas I would feel it come from my vagina (sorry again for to much info). Now this has been going on for about a year.
My old GI doctor never did any test regarding that and just told me to see GYN, I went to GYN and they told me to see my GI doctor so I got so frustrated from the back and fourth I haven't done anything about that. Then about 6 months ago I developed a abscess in my rectum. My GI sent me to a surgeon and i was tol to push on it an drain it because it would drain from the rectum when they would push on it. It wasn't that big at the time I went but after a few days I was in so much pain i went back and he made an slit to drain it and told me to soak a few times a day. i had to were pads for about 5 months and thought it would never stop and the pain wouldn't go away but eventually the dainage started to slow down and stopped for a few week or maybe even a month and I started to notice drainage again (a couple of weeks ago). I started to feel a small lump again but now I don't really feel it and it drains on and off. I also have huge hemroids so sometimes I don't know what the pain is from.
Ok, well this is what has heppened lately. Being that I didn't have a doctor I tapered off the entocort, when i went down to 2 pills I felt fine and then I had to go to 1 pill because I only had about 14 pills left. As soon as I went down to one pill I noticed my face started breaking out and fine bumps on my chest and face. They get very itchy so I was worried and went and asked the pharasist did it have anything to do with tapering off the entocort and she didn't believe so and told me to try a hydrocortisone cream which has not helped. I have been off the entocort since Jan. 20th and my face looks horrible and the fine bumps itch and so does the larger pimple ones. I saw a new GI doctor yesterday and because there was a mix up and the lady at the desk didn't put my name in the computer that I was there I almost didn't get seen. After 2 hours the doctor finally saw me but was in such a rush because the office was closed. I gave her all my papers that I had from every CAT scans, sono, and GI series that has been done over the last couple of years along with blood work that was done in October (showing my iron was VERY low). i am not sure if she was able to look at aeverything but I tried to tell her as much as I could while she was rushing along. As soon as I mentioned that i was not with the last doctor anymore because I didn't want to try the remicaid (especially because nothing else had been tried yet except Asacol and Entocort) she seemed like she didn't want to see me anymore. she started saying that maybe I need to go to a teaching hospital where they specialize in crohn's because she can't do remicaid. I was so shocked and started feeling very depressed because I just feel like no doctor will listen or take their time. She told me to start on Pantasa (2pills 4 times a day) and we will see if that stops the diareah. I asked her about taking Imodium because with the other GI doctor i was told to take it but she said "no". She didn't do any blood work and basically told me to just go to my primary care doctor for it. She was in such a rush to leave that she didnt even tell me when to come back. She told me that the Asacol and Pentasa was the same thing and if I am able to take Asacol then i can take Pentasa. She said it just works differently as far as were it breaks down in your intestines (or something like that). Then I go and google it and it sounds so scary to take, I read about people feeling worse, hair falling out, back pain and stomach pain, and diareah. I am so scared that I don't know what to do. I have already lost 50 pounds but I believe that is because I won't really eat because I don't want to run to the bathroom all day and night. I never have stomach pain or constipation, just am always running to the bathroom.
I am so sorry this is so long but I have so much on my mind and am so scared. The lady that worked there at the front desk said she was so sorry that I had crohn's because it is a horrible disease. I had another doctor say that it is something you would never want to have in your life. I don't hear anyone say anything encouraging at all. I'm at the point that I am scared I'm going to die from crohn's or one of the side effects from the medications. Was the new GI doctor right when she said Asacol and pentasa are the same thing and I shouldn't have any side effects from it? Should I try and find another GI doctor again and this time not give them my whole history and let them do all the test they need to. I havent had a colonoscopy in over 2 year now and when that GI doctor did it, as soon as he woke me up he said I didn't have crohn's but then ordered a small bowel series and it showed thicking where the small and large intestines meat so the he said I do have it and told me to take the asacol. I don't know what to do anymore at all. I have kids who need me to be there or them and this is starting to scare me so much. I also suffer from anxiety and panic attacks so that only makes it worse because I'm so scared, especially ecause I don't hear anything positive about living a normal life again.