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07-24-2011, 05:19 PM   #1
Omaklackey
 
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Crohns specialist Washington

I posted a little bit in the large undiagnosed thread but I wanted to go into a little more detail. I have had a colonoscopy, sigmoidoscopy and several stool samples done. The only test that ever came back "low" was the low side of normal HnH and low vitamin D. I begged for a CRP and ESR to test for inflammation and the doctor flat refused telling me overweight people will test high for inflammation. She also refused a CT scan or MRI. My GI doctor keeps telling me the horrible inflammation in my tummy is "distention" and I tried to ask him what would cause that. His only suggestion was Sucralfate and that the constant pain I have is from my back even though I don't have any back problems. I need a new PCP so I can get a referal to another GI. I'm trying to find one in Washington? Anyone here from washington state who has a good GI that has experience with Crohns? I'm driving six hours to talk to an endometriosis specialist but its a pretty fruitless appointment. She can't fix the constant diarhea, the bleeding from my bowels, hemmroids and ulcers. Those are all GI issues and I desperatly need a GOOD GI doctor!!
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Diagnosed 2009 Endometriosis stage IV
Current GI diagnosis: gastritis, Hiatal hernia, and GI thought IBD (before biopsy came up negative). Have had endoscopy, colonoscopy, sigmoidoscopy, and barium xray. Frustratingly negative results on many blood tests, except vitamin D's was low.

I just want answers...
07-24-2011, 07:17 PM   #2
Cat-a-Tonic
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Hi Omaklackey. Have you checked the CCFA's (Crohn's & Colitis foundation of America's) website? They have a "find a physician" section that might be helpful to you. At the very least, it should give you a few names that you can then google to see what others are saying. Here's the link:

http://www.ccfa.org/physician/?TMI=3
07-25-2011, 09:40 AM   #3
Omaklackey
 
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Yes I have, that's why I asked here. They don't have any that my insurance takes. I was hoping someone here might have experience with someone in washington. I have a RN friend in seattle and she gave me a few names but not necesarily people with Crohns experience?
07-25-2011, 03:38 PM   #4
allieinwonder
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I'm so sorry you are having so much trouble! Did they see anything with your scopes? Im surprised they dismissed it only because of one biopsy result. I think getting a second opinion is a good idea!

I dont have any suggestions on a doctor, im from the Atlanta area. i understand having to drive a distance for an appointment though.. Im in germany with the us army (my husband is a soldier) and the closest american GI is 3.5 hours away. I have been seeing a FANTASTIC GI the past 6 months and he was worth the drive, but unfortunately he moved back to the states. My new one is not so good! I believe a GI who trusts you and works with you as a person, not a patient, is worth a long drive. I hope you find someone who treats you with the respect you deserve!
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07-25-2011, 04:15 PM   #5
Terri
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You're from Omak? I'm in the wenatchee area..But i'm orignally from North Carolina. See Dr. Alan Smith..he is one of the best Gastroenterology doctors around North/Central Washington if not, the state.
07-25-2011, 05:26 PM   #6
Omaklackey
 
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what office is Dr. alan smith out of? Is it wenatchee valley clinic? Yup, I'm from Omak. I have tried two other GI docs with not much succes. Dr. Dominquez who didnt' even do a biopsy and Dr. Ballinger who is nice but is reluctant to do any testing.
07-25-2011, 05:48 PM   #7
Terri
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what office is Dr. alan smith out of? Is it wenatchee valley clinic? Yup, I'm from Omak. I have tried two other GI docs with not much succes. Dr. Dominquez who didnt' even do a biopsy and Dr. Ballinger who is nice but is reluctant to do any testing.
Yes, Wenatchee Valley Clinic. He is the best..we've had some bumps in the road but I think we just may of put my crohn's in remission.
07-25-2011, 05:53 PM   #8
Terri
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The only time I remember what/where Omak is because we bought illegal fireworks up there a few times lol.
07-30-2011, 11:47 PM   #9
Omaklackey
 
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I'm working on getting a new PCP. I had an appointment with him wednesday. I actually got him to order the blood tests I have been asking for, which are the CRP and sed rate (ESR) to look for inflammation. I"m praying they come back high enough I can get the GI to do the capsule endoscopy he offered before the barium xray came back so negative. Should I ask that Barium Xray follow through to be sent to another radiologist? There is just no WAY on earth it was normal. I have severe endometriosis which causes twisting and pulling and gnarly adhesions. I just don't think they looked very closely. Does anyone know how to go about asking for another opinion about xrays? I also asked my ER's doctor (I work at the hospital) if it was true that those tests could be thrown off by someone who is overweight and she said NO WAY. Nice to know my PCP lied to my face! Stupid woman. I so need a new Primary care physician.
07-31-2011, 04:29 AM   #10
allieinwonder
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I had the same thing happen to me...my SBFT was to only make sure the pill cam would get through my small bowel with no problems, but when it came back normal they decided to cancel the pill cam. It took months of going back and showing him (my GI) physical symptoms for him to realize I need it. I've found that with doctors in this field, even the good ones, you have to be patient because they don't seem to realize that IBD doesn't fit a certain checklist like other diseases. Because of my patience with my GI we established a level of trust and respect that I have never had with any other doctor, ever! Too bad he moved away...but before he left he went over my case one last time and told the new GI I'm seeing to do the pill cam. Thank God!

I've never gotten a second opinion on any of my tests, but I am about to on one of my blood tests. What I suggest is getting the test results from the hospital or doctors office that treated you, and take the images/results to the next doctor yourself.
08-02-2011, 05:28 PM   #11
Omaklackey
 
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I'm still working on the new PCP, new GI. I'm waiting for results to my sed rate and CRP. I'm hoping its unbelievably high and I can just make my GI give me the capsule endoscopy he said he was going to before my small bowel follow through. Or if that doesn't work go to the new PCP I'm considering and getting a new referral. I have a couple of possible GI doctors that a friend recommended in seattle. Dr. Joanne Selenger is one. Anybody heard of her?? The Carafate my GI perscribed has been useless. I started taking my Protnoix, carafate and Ranitidine together just trying to shut down the pain. UGH
08-02-2011, 07:45 PM   #12
Terri
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No luck with dr. Smith? Why would you go ALL the way to Seattle? I've had great luck with him. Every one of my problems he has addressed and won't stop until successful
08-02-2011, 08:03 PM   #13
Omaklackey
 
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You said you had some "bumps" along the way? What were they? Wenatchee is much closer but it would be the third at that office, Wenatchee Valley Clinic. I would rather go to wenatchee, but no matter what I need another referal. I really need someone who is like a dog with a bone who won't let go until he gets an answer? Is that Dr. Smith?
08-03-2011, 12:13 PM   #14
Terri
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Bumps meaning.. Figuring what meds were effective and phasing out those that don't work. Right now I am taking 6-MP and have my medical marijuana card. If it were not for Dr. Smith, I would be living with a colostomy bag. He IS the doctor to see. I can't complain.
08-04-2011, 06:18 AM   #15
allieinwonder
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CRP can be at normal levels even though IBD is causing problems. Its not a very reliable test! My pill cam was cancelled at first due to my normal blood test results, but after seeing my symptoms for months (the worst being a ulcer that caused a tunnel in my tongue), they did the pill cam anyway. So I wouldn't put all decisions on those test results!

I really hope they listen to you and get you the diagnosis and treatment you need, whatever the issue may be!
08-04-2011, 11:58 AM   #16
Omaklackey
 
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I'm hoping it won't be normal!! It took me two months to convince someone to do the test so I would have one freakin' test that showed I was having problems. I rather doubt it will be normal because i have severe Endometriosis and it will show up "usually" on those tests as well. I need just one lousy test to show there is a problem!! So I'm crossing my fingers and hoping... I'm so tired of waiting for test results that always come back negative. Unbeliveably frustrating! My GI doctor won't even call the severe bloating/inflammation I keep having "inflammation". He said it was "stomach distention". So I asked him what caused that and he didn't give me a good answer. The inflammation gets so bad that my ribs are constantly sore from all the swelling and shrinking. So I pointed that out to him and he tells me my back is out? WTF? Stupid doctor!
08-04-2011, 01:17 PM   #17
allieinwonder
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I get the same thing with my ribs and inflammation! My inflammation is located on my upper left side, and my ribs hurt from it. My inflammation can be felt by hand it is so bad right now, and where it is is also very warm to the touch compared to the rest of my body. A german doctor in the hospital could feel it by hand and acknowledged it, but when I was released 5 days later and transferred back to my american GI he said they didn't actually prove it, and he completely dismissed it. Once it happened and he could feel it he realized he was right, but then that GI moved back to the states. So now I am having to convince a new GI, who leaves next week...see a pattern? lol.

The only reason I brought up the fact it might come up is just to brace you for the possibility. I have had so many tests come back normal...it crushes me every time, and I hate to see others go through it as well. It is really hard to hear doctors put you and your gut feelings down...I have a hard time not letting it get me down. I fight myself constantly over whether its crohns or IBS... and it can get incredibly frustrating! My advice is to try and not let doctors get to you, and to have patience in this entire process. Every time I "give up" and just try and live my life crohns rages its angry head and sends me back to the ER, the hospital, or the GI...so its hard to not realize something is wrong! But I wouldn't know that if I didn't have patience.

Have you completely looked into the Endo being the issue? I have heard that endo can cause problems that seem like GI issues, like d and abdominal pain. I went the OBGYN route before I went the GI route because I have had ovarian cysts rupture before, and the symptoms were very similar. That combined with the gastritis and hernia...that sounds like a lot on your plate! I hope it all gets sorted out soon.
08-04-2011, 01:42 PM   #18
Omaklackey
 
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I have an appointment with an endometriosis specialist in august 22nd. Some of it/most of it could be endometriosis. I recently read a case study that showed that small bowel endo and crohns have a lot in common.http://www.ncbi.nlm.nih.gov/pubmed/10741938 I also read a case study where small bowel endometriosis can mimic Crohns disease. Either way, its inflammation. Sure is frustrating trying to get someone to listen. My cramping horrible BM's get pretty old. I'm on tummy meds (3 different kinds) and Fiber (which I swear makes it worse, it helps with the diarrhea but makes the cramping ten times more painful)
08-04-2011, 02:02 PM   #19
allieinwonder
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Thats good that you are on some meds! I understand with the fiber thing...I did fiber a few years ago and it helped, but now it makes the pain and d so much worse! That's one of the reasons I know its not IBS. And yeah, it is really frustrating when doctors just don't listen. I still really don't know why they do that...I see it happen to so many people too!
08-04-2011, 09:29 PM   #20
Omaklackey
 
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CRP was normal, but sed rate or ESR was high. I have a new PCP. I have an appointment with him on monday to discuss the lab values and I'm going to beg for another referal. If he doesn't give it to me, then I will get yet another PCP. *crosses fingers* So stupid!!!
08-04-2011, 10:12 PM   #21
Terri
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I really encourage you to look up Dr. Smith..and even if you dont have insurance..that's not a problem..they have this program called "Compassionate Care" which they can assist you with your needs. They will run all necessary tests and he's done everything I could ask of him..no complaints from me that's for sure.
08-05-2011, 07:06 PM   #22
Omaklackey
 
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I'm asking for the referal to Dr. Smith on monday. If I don't get it I will be switching to another PCP that was recommened in another town about 15min. away. I have no idea if this new PCP (that I just switched to) will get me another referal. I have already had two GI doctors. I really want to try and get in with Dr. Smith if at all possible since you recommended him. I'll tell him you sent me!! My belly just keep reminding me how angry it is! The carafate isn't doing anything yet for the pain and its pretty much constant.
08-06-2011, 12:37 PM   #23
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My hubby and I were talking this morning and realising I have had every stomach med including the most recent Carafate. Maybe, just maybe its NOT stomach ulcers. So I'm very curious if it is Crohns what kind of tummy meds do they give? When I had the scope two years ago I had ulcers of the esophagus, tummy and duadonum (supposably caused by NSAIDS). I don't want to start another thread and clutter the board so I was hoping I might get a few answers here.
so here is the list:

Prilosec
Prevacid
Pepcid
Protonix
Ranitidine/Zantac
Carafate
08-06-2011, 06:03 PM   #24
Terri
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I suggest you get off ALL that mess! that isnt gonna help with your crohn's !

My GI took me off all my meds including prednisone...since im in remission im only using medical marijuana...it works as a natural anti-inflammatory..and I got in touch with a doctor who I released my medical records to prove I was eligible and two weeks later..Card in hand and easily accessible to whatever I want...as of today im off all meds and feel great and making regular bowel movements..something that isnt too 'regular' for me to experience no pun intended.
08-08-2011, 07:56 PM   #25
Omaklackey
 
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well...
so here is a rundown of the appointment and I really need some input. I've gotten so I assume all Dr.s are A**es so I have a harder time judging these days. He asked why I was there and I explained that the reason I asked for the CRP and sed rate was because I was hoping it would be high enough to get some help from my GI doctors and I explained what I have been having problems with: pain, etc. So anyways he did a really careful look at all the records and went through what all the GI's had suggested. He did a very brief exam poking at my tummy (what that is supposed to accomplish?) and then he talked about some possibilities. He did take a nice long time looking at things overall. He is suggesting IBS (stupid doctor) but he is also rechecking H. pylori and ran a bunch of labs as well to check liver function, kidneys, etc. IF the H. pylori comes back negative he is suggesting one of two kinds of antibiotics to "clean out my bowels". He said he has another patient with similar complaints and that was the treatment that they came up with. The one antibiotic is Rixamin (and apparently is VERY expensive and the other is Augmentin. Both may be hard to get insurance to pay for as its an experimental treatment for "IBS" ( which I still don't think is a real disease, I think its what they call it when they don't have a diagnosis.) So do i stick with this guy or head to the other PCP that was suggested by a friend. oh, and classy... as I'm walking out he says "I'm not trying to be mean, but you may just have to live with this" what does that mean? I didn't ask for the referal to Dr. Smith. I thought I would give this Dr. a little bit to figure this out but then he made that comment.
08-08-2011, 08:02 PM   #26
Terri
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Wow..i'm sorry about your experience..But you know..you could of just went to the fourth floor there at the main Hospital entrance on the elevator there..checked in at reception to get hooked up with him instead of being put through all those idiots you've been talking about. I mean, THAT'S WHAT I DID..anyway.

I thought "fuck this, im just gonna march my ass up to the Gastroenterology 4th floor" lol.

I'm just having a hard time wrapping myself around your story here why they'd give you such a run around..because i've actually had a pleasant experience with them!
08-08-2011, 08:44 PM   #27
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The appointment was here not wenatchee, somedays I wish I could march up and say "I"M NOT LEAVING TILL YOU GIVE ME ANSWERS", wouldn't that be nice!
08-08-2011, 08:51 PM   #28
Terri
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Well doesn't the Link buses drive all the way up there to Omak? or at least close to Okanogan? I would hitch a ride on the bus or drive up here and do just that!
08-09-2011, 06:00 AM   #29
allieinwonder
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I'm sorry you're having so much trouble! I have gone through things like that in the past..my GI has literally said to me in the past that there is nothing left he can try and that I might just have to live with this the rest of my life. I was flabbergasted when he said that to me!

It seems to me like doctors see a dx like IBS and the normal test results that accompany it and they think their job is done. And in my experience, being angry or frustrated towards them (since this is a very annoying experience of course), just makes them think it is IBS even more. I didn't get anywhere with my doctors until I showed patience and understanding...then my GI went, "oh wait...something isn't right here".

I hope the meds he tries helps you at least a little! Many hugs to you!
08-09-2011, 09:12 PM   #30
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I have been doing some research and since I'm new this may be on the forum somewhere but IBS has criteria. If your doctor tries to say its IBS, check out rome III criteria for gatroentestinal disorders and the red flag symptoms for Crohns. I realised after looking at it that I defintely have the red flag symptoms and the big criteria with IBS is that its relived with bowel movements. I'm always in pain, it never goes away so IBS is out for me!! I also found this great questionaire for doctors/patients. Rome criteria III questionaire lists the tests as well that should be followed up with the answers. Its quite exciting for me. I have been to two GI doctors and didn't know they couldn't saddle me with an IBS diagnosis without some of these tests. What a wake up call. Not that the Doctors will listen but information is still power.
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