Searching for ANSWERS...

[whyclef]

Hello everyone, I am still in the Undiagnosed Club when it comes to my Crohn's-like symptoms. The confusion and frustration of remaining undiagnosed led me to switch to a new GI last month (11/2011), despite my previous GI being a friend. He (previous GI) continued to believe my symptoms were IBS and would not do another Colonoscopy until two years had passed, so I felt there was no other choice than to politely find a new doctor.

The new GI who is more experienced and Mayo Clinic trained, immediately setup a Flex Sig (without sedation) to see what was going on. Flex Sig revealed a skip pattern of mild non-specific inflammation in the rectum and the lower sigmoid region. Flex Sig also revealed a pre-cancerous Adenoma Colon Polyp that was removed, blessing that he caught it early. BAD NEWS is that I have to go back for a full Colonoscopy to check for any more polyps and take a biopsy of the terminal ileum.

GI Doctor is a bit baffled as I always have normal C-RP, normal ESR, IBD serology tests not consistent with Crohn's-Colitis, and now add to that Gout in my foot. He did say that inflammation he saw on flex sig was recurrent and established. Since the flex sig prep (enemas) and procedure (no sedation), I have had hyper-active bowel, morning nausea, and additional cramping. So, I am definitely ready for a diagnosis and treatment plan.

If all this were not enough, my wife recently had an ERCP-Sphincterotomy for Sphincter of Oddi Dysfunction. The procedure has left her with nausea and pain that makes it difficult to eat and maintain her dangerously low weight. She is currently out of state with her parents so they can help her and watch the kids (Mayleigh 3.5, Asher 1.5).

In the meantime, we will wait and search for answers...

 

[Cat-a-Tonic]

Hi Whyclef, welcome back and I'm sorry to hear that you're still suffering. It's a very good thing that you've got a new GI, sounds like your old one wasn't doing anything! I hope the colonoscopy can find some definitive answers for you. Skip pattern inflammation sure sounds like it could be Crohn's - Ulcerative colitis doesn't have a skip pattern, and although microscopic colitis does have a skip pattern, the inflammation is (obviously) microscopic and can't be seen by the naked eye. Good luck and please keep us posted on how the scope goes! If you haven't had a c-scope before, the prep is the worst part (stay near a bathroom while doing prep, and unfortunately you'll understand what we mean when we say you'll "pee out your butt").

And how funny, my oldest niece is named Maylee (different spelling but I'm assuming same pronunciation).

 

[whyclef]

Unfortunately, this will be colonoscopy number three so I am dreading the prep. Do you know if anyone in the forum prior to diagnosis had 1-2 loose bm per day, normal C-RP/SED rate, nausea/cramping, and ongoing weight loss?

My urgent bowel movements wake me up every morning followed by nausea . I have also lost 20lbs.+ since July, going from 210lbs. to 186lbs. Some of the weight loss relates to less appetite but I think it also points to some malabsorption.

The concern is that my GI is going to accept the same conclusion as the previous and guess that it is IBS. The docs do not know what to do with me when they see 'normal' blood work and a 'normal' number of daily trips to the bathroom, but upon scoping me find inflammation. I am so ready for a plan to treat this unknown disease in my body.

 

[Cat-a-Tonic]

Whyclef, I know that a lot of folks have had those symptoms prior to diagnosis. And about 10% of people with Crohn's will have entirely normal CRP even when they're in a horrible flare, and I believe those folks also tend to have normal SED rates. So normal bloodwork does not mean it's not Crohn's, and don't let your doctor tell you otherwise.

If your new GI also says it's IBS, it might be time to find yet another new doctor. Inflammation and weight loss are not part of IBS and any GI doctor worth his salt should know that. Good luck, I hope this scope finds something definitive and that your doctor doesn't say it's IBS. Good luck with the prep too, I know how miserable it is! Please keep us posted on what happens and how you're doing. Fingers crossed for you that you get some answers (and not an answer of IBS)!

 

[cb323]

Hi Whyclef! Small world, I also live in Tyler. I have recently started seeing a new GI. I did not have any problems with first GI but decided to get a second opinion. I too have had most of the symptoms of crohns including 45 lb weight loss in the last 6 months. All of my lab and numerous test have come back normal. My doctor seems sure that it is Crohns but no proof. Just symptoms. Very confusing and frustrating. He has me taking Pentasa for now but mentioned taking me off of it after a few months to see if I flare again. I hope you get your answers soon.

 

[whyclef]

CB323, it is a small world... I am using Dr. Radford at Digestive Health Specialists, do you mind mentioning what GI Physician you are using and have been satisfied with?

I will have my 3rd colonoscopy either this week or the second week of January, I have to decide soon. Hoping they can figure this out because I have been experiencing elevated abdominal pain, joint pain, and nausea since early last week.

 

[suschex]

I had, and continue to have, completely normal blood work in all areas, nothing abnormal about any of the tests they ran in the last year...no signs of anything wrong at all as far as medical/lab tests. Oh, and no diarrhea (or at least very, very rarely and only blood in stool for one day on Oct. 9, 2011) but I have always had frequent constipation. I have so few of the common symptoms. But then, they go in for a colonoscopy on October 10, 2011 and they find sever, pancolonic Crohn's Diesease with extensive damage from years of CD activity aftere an IBS diagnosis that was wrong in 2002. I guess I am just lucky they found it but now we can't get it into remission even with Humira. Oh, and they can't even track my disease with the normal things like bloodwork, amount of diarrhea per day, blood in stool, weight-loss (I have none since my small intestines is fine and I have no issues with absorbing nutirents), etc. They just have to do frequent colonoscopies to go in and actually look at what is going on. I do have severe nausea, gas, bloating, extreme fatigue, headaches and belly pain...all CD symptoms but not the typical. There are a lot of us out there that don't fit the mold and get a brush off from some doctors.

I am in Waco and will be looking to Dallas or Scott and White in Temple for a second opinion on treatment options soon I think. Do you like your new doctor there?

Hang in there and keep on fighting for the diagnosis you know fits...we know our bodies and if I had done that in 2002 instead of accepting the IBS I would not be in the position I am in now.

Take care!
Suzanne

 

[cb323]

Whyclef, I am seeing Dr Duvall at Digestive Health. I see him Jan. 4 for the follow up from my most recent colonoscopy. I already know that the biopsies were normal so I'm anxious to hear what he thinks now. He seemed so sure it was Crohns. I'm feeling much better right now, so either this 7 month flare has ended or the Pentasa is working really well. I started feeling better just a few days before I started taking the meds so I think it just finally ended..for now. I am still running a slight fever most days and my joint pain is worse. Not much abd pain or diarrhea right now. I think I'm not going to have anymore test for awhile ($$$)!! Maybe I just won't get sick again. My previous GI was about to send me to Baylor Hosp in Dallas so I decided to get 2nd opinion here first. I hope you get answers soon. Please keep me updated.

 

[whyclef]

I will keep you posted.:. I was last minute scheduled for a colonoscopy on Thursday due to a cancellation but I am out of town with family and am not really enthused about driving back 4.5 hours for the procedure. Plus, last night was misrable with multiple bathroom visits until 2:30am and cramping that still will not stop this morning. Dr. Radford has me on Hyoscamine .0375ER every 12h and Hyiscamine SR .0125 X2 every. It helps some but I get concerned that it will suppress symptoms and lead to bowel perforation. Anyone else have experience with Hyoscamine/Levsin/Levbid?

 

[whyclef]

Suschex -

I am satisfied with my new GI this far, but if things do not work out I will be going to Southwestern Medical School in Dallas. They recently opened an IBD Center with physicians from GI, OB/GYN, Hepatology, and Rheumatolgy that specialize in IBD. The next closest IBD center is in Houston.

I had, and continue to have, completely normal blood work in all areas, nothing abnormal about any of the tests they ran in the last year...no signs of anything wrong at all as far as medical/lab tests. Oh, and no diarrhea (or at least very, very rarely and only blood in stool for one day on Oct. 9, 2011) but I have always had frequent constipation. I have so few of the common symptoms. But then, they go in for a colonoscopy on October 10, 2011 and they find sever, pancolonic Crohn's Diesease with extensive damage from years of CD activity aftere an IBS diagnosis that was wrong in 2002. I guess I am just lucky they found it but now we can't get it into remission even with Humira. Oh, and they can't even track my disease with the normal things like bloodwork, amount of diarrhea per day, blood in stool, weight-loss (I have none since my small intestines is fine and I have no issues with absorbing nutirents), etc. They just have to do frequent colonoscopies to go in and actually look at what is going on. I do have severe nausea, gas, bloating, extreme fatigue, headaches and belly pain...all CD symptoms but not the typical. There are a lot of us out there that don't fit the mold and get a brush off from some doctors.

I am in Waco and will be looking to Dallas or Scott and White in Temple for a second opinion on treatment options soon I think. Do you like your new doctor there?

Hang in there and keep on fighting for the diagnosis you know fits...we know our bodies and if I had done that in 2002 instead of accepting the IBS I would not be in the position I am in now.

Take care!
Suzanne

 

[natatak227]

Don't like them just make the diagnosis of IBS, especially if symptoms lead to something different. I let that diagnosis slip for 3 years, and I'm still battling symptoms with no relief.

I'm glad you are going to Southwestern Medical School. I have found that going more research based hospitals/clinics has been more helpful. They are about the research, so they really want to try and find out what is going on with each patient. They also have a lot more resources for testing.