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Doctors other than GI Docs?

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Ulcerative Colitis
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Posted 3/8/2011 12:35 AM (GMT 0)
I've been to a few GI doctors over my 8 years with UC. Both GI doctors I've seen recently tell me Remicade is my only option now that I've exhausted all the other medications.

I just want to know if any of you have found doctors in different fields or your general practitioner that have helped you find remission. I feel like the GI doctors aren't even considering any other possibility of treatment. I'm meeting my general practitioner tomorrow, and hoping to find a recommendation to a specialist that deals in parasite type infections. I am personally convinced that this disease is caused by a multitude of different situations in different people, which is why there is no perfect way to treat a person. I look at the inflammation as a correct action of the body to try to fight off some microscopic pathogen. I think that they'll learn more about this at some point, and it will be a sort of "aha" moment.

Thanks.

Post Edited (Thoreau) : 3/8/2011 10:25:04 AM (GMT-7)

Posted 3/8/2011 1:07 AM (GMT 0)
Why do they say Remicade is your only option? Are you not eligible for surgery?
Posted 3/8/2011 1:21 AM (GMT 0)
I found a colorectal surgeon.

I hope your GP has some good advice for you.
Posted 3/8/2011 1:24 AM (GMT 0)
Check out Aajonus Vonderplanitz's books.

Also, read my signature.
Posted 3/8/2011 1:37 AM (GMT 0)
Surgery is still an option, but I don't think I'm that bad off. Remicade is my only medication option left. I've done all the regular drugs: mesalamines, mesalamine enemas, 6mp, entocort, etc... Prednisone kind of works, but isn't a long term solution.

Here's how I'm doing right now...
I'm at a point where I use the restroom between 4-5 times per day (with the occasional 6-7 times if I took too much of a supplement or ate too much sugar). Once every 5 days or so there is a little blood streaking in one or two of the BM's. The stools vary from being narrow and loosely formed to thicker and dense. On occasion I get diarrhea towards the later part of the day. In general I use the restroom 1-3 times within 2 hours of waking up, and then the BM's are spaced out through the day. There is slight discomfort, but nothing near overwhelming by any means. When I need to use the restroom it's not urgent in the sense of needing to be there in a minute or less. I have days when I can hold it for hours, and others where I need to be to the toilet in 10 minutes or less.

I've been trying probiotics and natural antibiotics. The probiotics make me use the restroom a lot more, and the natural antibiotic makes me feel better and use the restroom far less.

Anyways... my GI doctor insists I need Remicade, but I want to try to go at it from a different route first. I've always maintained respect for the GI doctors, but this is MY challenge and I want to give less risky options a try first.

Thanks for your replies. I'll check into those books.
Posted 3/8/2011 1:49 AM (GMT 0)
I agree...it is your challenge and you have to do what you are comfortable with. It sounds like you are being very proactive and doing good research. I hope you do find something that works for you.

The way you are describing your symptoms right now, I probably wouldn't be jumping for surgery either. The last two flares I've had have been awful with urgency, pain, and bleeding and I just can't live like that. If it was more like what you are describing, I would still be hanging in there too.

I am always amazed at how different this disease acts for different people. I'm also always amazed at all the variations of treatment and advice people seem to get from their GI's. All of us are different which makes it tough and makes being your own advocate that much more important. I hope you find something that will help you stay of Remicade like you want.
Posted 3/8/2011 1:57 AM (GMT 0)
Thank you run4pancakes. I've been spending this year paying very close attention to my health, and it has been rewarding. I had a couple days in a row where I was "normal" so to speak. My stools were completely firm, thick, and only happened 2-3 times per day. Those were the best days I've had since diagnosis 8 years ago. It's given me hope.

I wish you luck with your surgery. I had jaw surgery last year (elective, to help in conjunction with braces)... and though I was scared about it I am very happy I did it. If J-pouch surgery could give you your life back then it has to be infinitely more rewarding than the surgery I went through. So... what I'm saying is that it's good you're taking care of your health and getting things going in a positive direction! Good luck!
Posted 3/8/2011 2:03 AM (GMT 0)
zach, I haven't seen any practitioners besides my GI and my yearly but I could see it being useful. I have heard of people seeing rheumatologists or GPs to try medications that GIs sometimes won't prescribe like LDN or antibiotics besides Flagyl/Cipro. I have thought about going but I haven't gotten around to it.
Posted 3/8/2011 7:31 AM (GMT 0)
Yes. I wouldn't opt for surgery if my symptoms were mild, I'd use the time to try healthy alternative treatments first. And if those didn't work, then I might let my symptoms go for awhile if they didn't interfere with my life. Once they start interfering with my life though, I'd probably opt for surgery. That's me. I'm very active and conscientious about my health. I refuse to take pred again or any biologicals and immunologicals. Besides I'm easy to get infections due to abusing antibiotics. The more time that passes, the less likely I'll get an infection from the surgery if I stay away from the hard UC meds and antibiotics.

So, no, I wouldn't take Remicade. However, you still have time. You haven't got to the point in which you have to get surgery. You still have time to try many of the healthy, readily available, and relatively cheap alternative treatments. Read as much as you can on this forum and try alternative treatments that you think might work.
Posted 3/8/2011 5:00 PM (GMT 0)
Thanks for the additional replies. Today I went to see my Primary Care Physician, and he really listened to me... which was VERY nice. I told him my that in my opinion, the bowel dis-ease is caused by some microscopic pathogen. We discussed it some, though he said that if that were so you would think someone would have discovered it. He is really good to work with. He said that if I want to try flagyl/cipro that he would prescribe it for me.

I'm going to keep researching things, and try at least one other alternative method first. I really feel though, that if I'm able to go in to my PCP with researched suggestions of what I'd like to try, that he's willing to work with me. That is enough to keep me going for now :-)

Next week I'm going back to see my oral surgeon for a follow up appointment. He seems to be the best of the best in his field, very confident, and incredibly understanding. The hospital where he runs the oral surgery section is a university hospital. I'm going to talk to him about who he might know that could possibly have a different/new and well researched take on what could be causing UC. Somebody out there in the medical field has got to be diving deep into this disease and trying to get a better grasp on understanding it!

My personal goal is to be able to join this outdoor adventure group that I know of, and not have to worry about finding bathroom breaks every couple hours on canoe trips with people that I'm new to being around. If it weren't for this disease I think you could throw me into almost any social situation and I'd be fine :-)

Thanks to everyone on here for caring. I think this site is such an asset for people like us!
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