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Why I hate my GI!!!!!

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Crohn's Disease
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Posted 1/8/2011 3:43 PM (GMT 0)
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 2 weeks.

 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)

Posted 1/8/2011 4:37 PM (GMT 0)
Well I am sorry you are feeling bad, but really I think you could have saved yourself some grief if you would have started the meds. My personal opinion (based on many similar stories on this forum) that diet AND meds should be considered as complimentary of eachother. I know you were on have been on Lialda, but you have abscesses and fistulas which Lialda and diet alone are not going to heal. As well as Severe Crohns.

In those situations Remicade or Humira are meds that will work well for fistulas. Many on this very forum have found relief by going on these meds. Diet alone or with antibiotics are not enough. You also need to remember that you have a chronic and incurable health condition, so your dislike of docs is going to have to change. You need to treat this disease at all times and you are going to need these docs to get you well.

Now I will agree that a doc who doesn't even touch you is wrong, wrong, wrong. What I do when I am looking for a good doc, is I ask the nurses for their opinions of who they like. They know these docs because they work with them all day long and see how they treat their patients etc. So if you have a nurse you really like, talk to her and ask for a recommendation. Thats how I found my GI and family doc, and both of them are great.

I hope you can find another doc and get yourself some treatment and get feeling better soon. Hugs!
Posted 1/8/2011 5:17 PM (GMT 0)
OMG!!!!!!!!!!!!!! You poor poor thing!!
I agree with Nanners. If you do end up going to the er again I too would talk to the nurses there and get their opinions on some of the gi's they deal with. good luck with everything
Hugs to you
Posted 1/8/2011 10:29 PM (GMT 0)
I know your pain I had one GI who had lab results flat out saying I was flaring and he wrote in my chart Patient thinks she is in a flare...1 month later my intestine perforated and 4 surgeries later ...now...I did switch GI docs immediately following my perforation actually went to a hospital i Knew my GI didnt go to. I have since moved and the GI I see now doesnt palpate my abd etc but does treat me . I do have fistulizing CD my 1st fistula was seen in the CT where they found I perforated. then after 3 surgeries I didnt go back on Humira immediately since I had a wound infection so I ended up with a fistula again. The humira (I was on biweekly at the time) made it smaller on the weeks I took it but then would flare worse on weeks off. they tried TNP via PIC line to treat the fistula with no luck so I had another surgery 3 years ago (this week to be exact) and so far so good I am on Humira weekly, Pentasa, and Entocort but it is as under control as mine will get.

you may want to call your insurance see who else you can get as a GI you may have to travel a little but it may be worth it
Posted 1/9/2011 12:34 AM (GMT 0)
No your abscess will not go away with antibiotics, and no it will not go away with a ct guided drain. You must find a good colo-rectal surgeon. Your gi is of no use to you when you have an abscess (even if he is a good one :) because there is nothing he can do for you. A little background for you...I had an abscess the size of my surgeon's fist. He stood at my bed and said this is the way they do them now...meaning ct guided drainage. So, that is what I had done....spent a week in the hospital...they took the drain out and I went home. A week later, back I went and they did it again. This time they left it in for 6 weeks and then pulled it. Of and on I would have drainage from the spot where they went in but no one seemed to think it was a big deal. about 8 months after the drain was pulled, I woke up in alot of pain, and it got much much worse. I went to the er, and my surgeon wasn't on call, so I got another surgeon and that was the best thing that ever happened to me!

He explained to me that you can not get rid of an abscess with the ct guided drain. You must have the abscess drained in an operating room where it can be drained, cleaned out, and left open to heal from the inside out. Also when he is in there he injects a die in the abscess then looks with an anoscope in my rectum to see if there are any internal openings indicating an abscess. This is the only way to successfully get rid of an abscess. I absolutely love my new surgeon...and trust him.

You have gotten good advice about asking around at the hospital...if I was your relative who would you want to operate on me? 99% of the time they will tell you. I hope you can find someone to give you the help that you need.
Posted 1/9/2011 5:17 AM (GMT 0)
An abcess is usually caused by a bacterial infection, so it does make sense to treat it with antibiotics. In fact, we just saw an infectious disease doc the other day who did not favor surgery, because he says surgery can make infections worse. Of course, if he saw your case, he might be opting for surgically draining the abcess.

In any case, you certainly can't start a powerful immunosuppresant like Humira if there is an infection in your body.

Flagyl can improve fistulas so yes, both fistulas and abcesses can be treated by antibiotics.

Because this thing is actually responding to antibiotics, it sounds like a bacterial infection. Unfortunately, there are many "bad bugs" around which are highly resistant to antibiotics. Is an infectious disease doc on the case? The reason I ask is because the approach with antibiotics seems a bit hit and miss, with one doc presribing one thing and then another doc giving you a shot of a different antibiotic. 

What seems to be missing is a systematic, scientific, approach to eliminating the abcess. 

Post Edited (njmom) : 1/8/2011 10:28:34 PM (GMT-7)

Posted 1/9/2011 11:45 PM (GMT 0)
blush  This response goes out to skofbensk: Just wanted to let you know that I've had Crohns now for 10years and no surgeries but this is the 2nd Gastro Doc I've been to. This one for about 11/2years. I now have developed pre-existing liver conditions because of my Crohns, and lucky for me, over the past year or so they have been only minimally. As of Oct of lasdt year I was diagonised with 5-6 Fistulas and a Stricture in my small bowel. He said surgery was not an option because of the length of time going without surgery or meds. The only thing he has suggested for me is Humira. But I do know that it comes with alot of side effects too, so we'll see what he thinks when I go for my appt. this week. Just hoping for the best!! Take care and Good Luck!!Silvergriz
Posted 1/10/2011 3:24 AM (GMT 0)
i agree with chroniemom, you need a colo-rctal surgeon. He was a life saver for me. he also understood the pain I was in when my new GI dr told me he "didn't prescribe pain medication." He was more concerned with being on the board of a crohn's foundation or giving speeches on research to actually treat his patients. It's terrible! I've had a few drs and finally found one I like and trust. Good luck, i know it's so hard.
Posted 1/10/2011 6:06 AM (GMT 0)
you kind of sound a little like me...i was real stubborn at first when i was dianosed with crohns...doctors wanted to put me on the strong meds like remicade, but i wanted to try the mild stuff with less side effects first. months went by and my pain came and went, some weeks i was fine and others i was in alot of pain.

I also went through about 4 different doctors till i found one i liked. so now i just started on humira a week ago, and already am noticing improvements...no side effects yet, so im hoping everything works well. i say go for the strong meds, it really does sound like you need it. you might be worried about side effects, but the benefits could be totally worth the risk....good luck.
Posted 1/10/2011 2:35 PM (GMT 0)
Nanners and takilra: thanks, I know I am being stubborn but I have felt the whole time food was my underlying cause, it has just taken me this long to find a Dr to do the test. Until my x-ray series in Sept they had never found any fistulas or abscess. I only found out about the food allergies a week or 2 before. And my biggest one is yeast, which is everywhere so it was a constant barrage on my body. I just want them to get rid of the abscess and then see what my intestines actually look like before I agree to take the medicine. Luckily I didn't go to the er but have a follow up with my GP this morning.

Dragonfly: I have been looking into GI's this weekend, I found a site where people can rate their Dr, guess what, mine gets a 3. I found one that's a 4 1/2 so I will discuss that with my GP today as well. However this probably isn't the time to be changing Dr's I really hate this guy and can't go back to him.

Chroniemom: I hope surgery isn't really the only option. I thought it was gone the last time and think if the Dr would have done the bloodwork to check and treated me a little longer it might not have come back.

njmom: My GP took pitty on me luckily and gave me the anti-biotic to save me another expensive trip to the ER last thing on Friday. My only 2 Dr's are the GI and GP. The surgeon I saw in the hospital also said surgery would probably make things worse.

silvergriz: I know Humira has helped alot of people and I don't think anyone is wrong for taking it if they need it, but for me I wholeheartedly believe there is another way, and like I said if this diet change doesn't work then I am on board, I just want the Dr to give me a chance to prove it to myself. I have seen a dramatic change since I cut out the yeast and other foods, unfortunately the abscess and fistula were already there at the time.

wednesday: this is the first time I have ever asked for pain meds, I have just suffered through it in the past, but this I could not do!!!! My dr. didn't argue the pain meds luckily.

justcallmeD: I know I could be in denial, but seriously if I have to get my blood drawn every week to make sure the medicine isn't killing me then I just want to be sure it is something I absolutely have to have and not just say ok. I have been so sick the past few years and know I cannot keep living this way, it is too hard on me and my family. Like I said, I am just trying to go through all of my options first and I don't appreciate my Dr blackmailing me into the drugs he wants me to take and not respecting my feelings regarding my body and my disease.
Posted 1/10/2011 2:48 PM (GMT 0)
Well with all due respect, I think you are going to be suffering alot longer than necessary. You have some serious side effects of Crohns going on right now. Some special diet is not going to be enough to heal this abscess and fistula. Remicade is one of the best meds to treat these side effects. The antibiotics might help for a bit, but to close up the abcess and fistula you are going to need some extra help medicine wise or you will wind up having to have surgery. I wish you good luck, and granted I am not a doc, but I have seen since being a part of this very forum folks suffer greatly by trying to do it their way. JMHO
Posted 1/10/2011 2:59 PM (GMT 0)
Nanners: I know that the diet won't heal the abscess or fistula but both say you can not start taking them if you have ANY signs of infection. So until this thing is gone and they can prove to me that it is absolutely gone this time and not coming back in another 6 weeks I can/will not even consider it. I am not against meds I just can't see just taking powerful possibly harmful meds if there is another way to do it more safely with less powerful meds. It's like someone taking dangerous diet pills that could give them a heart attack just so they don't have to quit eating junk food.
Posted 1/10/2011 11:25 PM (GMT 0)
What is the site where you found ratings by Dr? I think my Dr is educated but he has no bedside manner and if he wouldn't have fluffed off my concerned two years ago about it being IBS and me being 'stressed' and 'overtired' (I told him I was not!) I would have known a lot faster!
Posted 1/11/2011 12:07 AM (GMT 0)
Eliminating yeast from your diet is a good thing and will make most people feel better. Unfortunately, I have yet to see a fistula healed through diet. I have had an abscess and it is terribly painful. The antibiotics should heal the abscess but without healing the fistula you may end up with another soon. I think that it is a good idea to find a better G.I. if you do not have trust in him or her. Just remember that if they are a good G.I. and they see a fistula, they are going to recommend Remicade or humira. Reguardless of which medication you decide to use, stick with the good diet though because it will help you.
Posted 1/11/2011 3:13 AM (GMT 0)
The abscess and fistula is part of your disease so you can have remicade while you have either one of those. An abscess is a walled off pocket of infection, so antibiotics cannot penetrate it... You are risking your life by waiting around with an abscess.
Posted 1/11/2011 7:51 AM (GMT 0)
I have to agree with chroniemomx2 and Nanners. Diet isn't going to cut it, and sever Crohn's is not something you want to mess around with. I've read of PLENTY of people on here that have had abcesses and fistulas that were taking Remicade to help them, and it did. I can understand why you might be hesistant, but really what you are having now is already dangerous enough. You may have avoided what you are going through now as it is, I'd listen to these doctors and get better treatment for your Crohn's.
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