Are all GI's as bad as the ones I've found? How do you find a good one??? I had to change insurance companies a couple years ago therefore I had to change Dr.s. The new GI I went to for over a year just had me come in every 6-12 weeks and pay him $40 to watch him draw a picture of where my inflammation was and tell me I needed to go on Remicade and 6mp. I would tell him I was not ready for that. The first month I saw him he did a colonoscopy and CT which showed severe inflammation in the colon and terminal illium/lower small intestine and labeled me as having "Severe Crohns". He never touched me, never did blood work nothing. I knew I was having food issues and he told me in the same conversation that "food has nothing to do with this" and "if you starve yourself you will heal". I decided I wasn't going back to him.
So this August I got a new GP who did a food allergy test, yeah, finally some answers, I am extremely intolerant to yeast!!! I got these results in Sept. the same day as my first appt with my newest GI. The GI ordered a x-ray series which I had done on Sept 23rd? I was still having some D and had a lump about
the size of a golf ball which I assumed was inflammation in my illium. I followed up with him on Oct. 6th he told me my terminal illium and lower small intestine "looks pretty bad". said to keep taking the Lialda and prednisone and consider Remi or 6mp. I still wanted to wait on those and give the diet changes a chance to see what difference that would make. After trying to eliminate yeast I was feeling soo much better after about
I was cleaning my house catching up on all I hadn't been doing bc I was sick, rearranging furniture etc. All of a sudden around the 15th I developed this ripping pain in my gut and could not move more than half an inch at a time, I had this swollen mass to the right of my belly button about the size of a baseball. I assumed it was a hernia bc, stupidly I had single-handedly moved my sons bunk beds from one room to another the day before, (it is solid wood with the desk and dresser). I didn't think it had anything to do with my crohn's and was wondering if it was even a hernia bc I was not feeling any inflammation or blockages, still having one or two formed bowel movements a day. Not being one for Dr.s I put it off, it was still there but the pain had eased.
Finally on the 22nd I decided I should go to the Dr. (my GP as I didn't think it was crohn's related) it was a Friday and she couldn't see me till Monday. So she was baffled when she saw it, her eyes got big and she didn't know what to say lol. She thought as well it could be a hernia and ordered a CT. They couldn't get me in till the following Week. By Wed morning it had grown to the size of nerf football, I couldn't move or walk without excruciating pain so I went to the ER. they did ultra sounds and a CT. They also pulled up the results from my Xray series in Sept and told me that it had shown a fistula and abscess, which my Gi never told me about or treated me for.
So at this point my golf ball was now a football and it was the abscess, they put me on IV steroids and anti-biotics, admitted me and scheduled me for a CT guided drain the next day. Well the next day came and my football had shrunk back down to a base ball and when I went in for the CT they said there really wasn't enough there to drain and it looked like the anti-biotics would take care of it, great, woo hoo, no drain!!!!
I went home the next day with my prescriptions and a follow up with my GI in a couple of weeks. Who by the way never came to the hospital during the 3 days I was there, his office is in the same parking lot as the hospital I was in, he did send one of his associates whom I had never met. I followed up with him a couple weeks later (around Nov 12th or 14th) during the last few days of my anti biotics, again he didn't touch me, didn't palpate my abdomen, no blood work nothing, He sounded as if he didn't even know I had been in the hospital. He didn't have the results from the tests they had done or anything, I had to request them. just said finish my anti- biotics and keep taking the other meds and I could start weaning off the pred about 10mg a week.
I felt great so I didn't see a problem at the time. I as well thought it was gone. Well, Christmas morning, Bam the hideous pain was back along with a mass almost the size of a base ball, I scheduled an appt with him on the 30th. He still didn't have the results from the tests in the hospital. He actually had me lay on the table and looked at it, told me to go back on the anti biotics, so I did, they worked 6 weeks before right. Well they didn't work this time, after 7 days with no relief at all I called his office and told him they weren't working at all, the vicodin wasn't touching the pain and I needed a different anti-biotic. He told me to take 1 and a half the levoquin instead of 1 and up the flagyl to 4 a day instead of 3 and follow up with his associate on Monday and have a TB test and blood work done to see if I can do Humira, which he knows I am not ready to do!!!! or follow up with him on Thursday.
Yesterday, as this still wasn't working and I realized I was now out of the levoquin anyway, I called his office to tell him I was out of the levoquin and could he call in a prescription for something different. Well he was out of the office and wouldn't be available till MONDAY!!!! No emergency line BS, and none of his associates could change my prescription, WTH. I asked if I had to go to the ER bc I could not make it through the weekend and they told me yes, and to let them know he was my Dr. "I said why so they can call him" she said no so they can send him the records.
Not wanting another trip to the ER or the bill I called my GP, she said I could come in and she would give me a shot of Rocephin, I went in for my shot at about 4:15, by 7:30 last night I was already feeling better and this morning my butt hurts more where they gave me the shot than this mass in my gut, which is still about the same size but squishy instead of firm and is not putting so much pressure on everything around it. So I will be following up with her on Monday, NOT MY GI, but my god how do you find a good GI, they are just names in a book. I honestly feel this guy is completely incompetent and if he had told me about it and started to treat it in early Oct. it never would have gotten to this point in the first place.
So for any of you who have had fistulizing crohns and an abscess, can these go away with just anti-biotics and steroids or is Humira or Remi the only option? In the hospital the surgeon told me that he could go in and remove about 6-8 feet of intestine and the fistula but what I would end up with is more inflamed intestine and possibly 20 fistulas. Honestly my feelings are that right now the only thing I am dealing with is the fistula and abscess which were around before the diet changes, this doesn't feel like "normal crohns" inflammation to me. Other than this horrific pain and mass I have energy, normal bowel movement for the first time in over 5 years, no mucus nothing!!! I want to deal with the abscess and get it gone, then do a pill cam, I feel at this point I have done and tried everything I can on my end and if they can prove to me that I still have inflammation not related to this abscess then I will do the humira.
*I added some paragraphs to make your post easier to read*
Post Edited By Moderator (Nanners) : 1/8/2011 9:28:39 AM (GMT-7)