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08-03-2011, 01:43 PM   #1
Cat-a-Tonic
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Cat's updates

I thought I'd start a thread for updates about myself - I will also still post in the big mega-thread but thought I'd put all the key details in here. (Warning, this may end up being just as long as the mega-thread! I am known to ramble on. )

Here's a rundown of everything so far:

Mild symptoms high school and college, possibly even earlier than that. Stuff like "sensitive stomach" and recurrent anal fissures, also recurrent UTIs. Nothing besides the UTIs was ever bad enough to go to the doctor for, and they never ascertained the cause of my frequent UTIs.

Onset of acute symptoms hit Oct 9, 2009. Horrible nausea, weakness, dizziness, diarrhea, abdo pain hit me out of the blue. Symptoms lasted for weeks, was eventually (mis)diagnosed by an urgent care physician as having viral gastroenteritis. Felt somewhat better after getting IV fluids and anti-nausea meds.

Felt more or less okay for several weeks, although never quite felt like my old self ever again. Second round of bad symptoms hit in late Nov 09. Went to GP who thought it was unusual but not unheard of to have viral gastroenteritis twice in 2 months.

Round 3 of symptoms hit in Dec 09. My GP wasn't available so I went to see a different GP in the same clinic. She ordered many blood & stool tests. The only test that came back abnormal was a blood test indicating my sodium was low. I was told "eat a bag of chips and you'll be fine." Blood tests included celiac & thyroid, stool tests looked for bacteria or parasites. All these came back normal.

After having more flare-ups, my GP referred me to a GI. I first saw my GI in Feb '10. At the time he mentioned Celiac and Crohn's as possible suspects.

April '10 I had my colonoscopy. Scope was normal, GI took about a dozen biopsies which also came back normal.

June '10 I had a horrible flare. GI and GP were unavailable so I went to see yet another GP in the same clinic. This doctor was awful - he took one look at my chart & told me that I have IBS and that I "look depressed" and proceeded to offer me several anti-depressants. I was so mad, yelled at him that of course I'm depressed, anyone would be with symptoms like this and no answers! I then put my foot down and demanded to try prednisone. The bad GP agreed on the condition that I also try Dicyclomine (Bentyl), an IBS med. I agreed. Bentyl did nothing for me, and the prednisone worked wonders.

I was on 10 mg pred for 5 days and those were the most wonderful 5 days - I felt euphoric and my symptoms all went away! Symptoms came back with a vengenace after the 5 days were up, and my blood pressure plummeted. I ended up in urgent care again. After IV fluids and rest, my BP stayed dangerously low. I finally googled low BP and found that low sodium is a common cause, and I remembered the "eat a bag of chips" thing, so I had some soy sauce (high in sodium) and instantly felt better. I'm not sure if the pred or a flare caused my BP to drop like that.

I saw my GI shortly thereafter, and he was very upset that I had taken the steroids without consulting with him. He said he'd never give steroids to an undiagnosed person, that it wasn't safe. But when I told him how well the pred worked, he changed his tune. I don't think he fully believed that I had an IBD until I told him the pred worked. He ordered more tests for me, including an abdominal CT (not CT enterography). Again, this came back normal on my intestines (it did have an incidental finding that I have nodules on my liver).

July '10 (I think, I'm going by memory on these dates so I may be a bit off on a couple of them!) I had an ACTH blood test for Addison's disease, since Addison's can also cause gastrotinestinal symptoms and responds to pred. This test came back on the low end of normal and Addison's was ruled out.

Aug '10 I had an upper endoscopy with biopsies. Again, all came back normal, but this meant that Celiac was definitely ruled out.

Sept '10 I had the pill cam. I had very high hopes for this test, but once again the results were normal.

At some point around the same time period that I had the pill cam, I also had an MRI of my liver to check the nodules. They were diagnosed as benign focal nodular hyperplasias and not the cause of any of my symptoms.

Oct '10, one year after onset of acute symptoms, my GI decided to try me on Entocort, which is similar to prednisone but milder, not systemic, fewer side effects, and my GI felt it was safer to have me on it for a longer time. The only side effect I experienced was chronic headaches, which were controlled well by 25 mg of Amitriptyline. I started Entocort at 9 mg for 6 weeks. I tried to taper to 6 mg at the 6 week mark, but I flared up again so my GI put me back on 9 mg for another 6 weeks. After that 6 weeks I successfully tapered, and I stayed at 6 mg for 4 months, making 7 months total.

I successfully came off of Entocort in April '11 and have been in or near remission since then. I've had plenty of other related issues in my near-remission state, including migraines, acid reflux, gastritis, arthritis, bad side effects to meds (specifically Compazine and Hyoscyamine). If I get too stressed or eat the wrong thing my symptoms come back and hang around for a couple of days.

It's been a bumpy road, but I'm finally feeling somewhat well again and am again able to exercise, go out to eat, make plans, and just generally live a mostly normal life. I feel in a way like I'm a success story, that even if you don't get a diagnosis right away, you can still get into remission and live your life and feel well & be happy! I'm hoping the other undiagnosies here can get some hope out of my story. I've been through horrible depression, frustration, exhaustion and devastation with this miserable illness, but there is a light at the end of the tunnel! You just have to keep fighting to get there.
08-03-2011, 02:00 PM   #2
xJillx
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Thanks for sharing you story, Cat. You've been through a lot, and I am happy to hear you are finally starting to feel better. You are a true inspiration to all of those who have not yet received a diagnosis.

I hope you continue to improve each and every day.
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08-03-2011, 02:11 PM   #3
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Yay Our Cat!
That was ace!
Other undiagnosies will find so much inspiration from that! Hope you stay feeling fab for a long time to come.
xxx
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08-03-2011, 02:32 PM   #4
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Thank you for putting that all together, and sharing it Cat!
I hope you have continued success with your health, and in the mean time maybe you can get a diagnosis as well!

hugs,
~T~
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08-03-2011, 02:59 PM   #5
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Ditto what everyone else said. Hope you stay feeling well for a long time. But I also want you to get some answers so if you start feeling poorly again, I want them to see something. In any case I hope it's awhile before you feel bad again.
08-03-2011, 03:32 PM   #6
Cat-a-Tonic
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Thanks all for reading that monster of a post! I keep thinking of little things to add but I'll try to resist the urge to add even more to the original post. I will add here though that my CRP was a bit high during my non-remission time but nothing freaky - I remember it being 17 at one point. The last time I had my CRP done, about 2 months ago, it was 10 which my GI said is normal! So another good sign that I'm headed into or already in remission.
08-06-2011, 12:03 PM   #7
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Wow, what a history Cat! I didn't know the full details until now...I'm sorry you are going through all of this! I truly hope you are able to show proof to your GI soon so that your undiagnosed days are over soon. You truly deserve it!
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08-06-2011, 05:13 PM   #8
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Wow Cat, when you put all together like that it is mind blowing!

Thanks so much for putting it all down. You are one amazing and strong lady!

Thinking of you,
Dusty. xxx
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08-06-2011, 06:23 PM   #9
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that great cat, i am very glad to hear good news. i hope you will get diagnosised soon. and stay in remission for a longggg. time . best wishes

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08-06-2011, 09:25 PM   #10
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Personally Cat, I hope you never need to go back and remain the undiagnosed yet asymptomatic wonderful, caring lady you are right now I have no doubt that should the need arise, you will need no prompting to seek care.

PS-I'm glad you did this! That monster thread is reaching novel dimensions and it's become a little (understatement of the century) daunting to find anything specific in there!!
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08-08-2011, 03:35 PM   #11
Cat-a-Tonic
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Mark, you sound just like my GI! When he put me on Entocort, he said he was going to give me a (much needed) break from all the testing and try to get me some relief from my symptoms, and ideally put me into remission, and that getting a diagnosis would be on the back-burner for now. I was skeptical that I'd stay in remission after coming off of Entocort, especially given that I had an average of 1 or 2 bad days per week while I was on it. I'm actually doing a little better off of Entocort than I was while I was on it! I'm not on any maintenance meds at the moment, only on Omeprazole (Prilosec) for my acid reflux and Amitriptyline - my GI thinks that Amitrip will help keep me in remission, although again I'm skeptical. But, so far so good, and my GI has said he doesn't anticipate me having another major flare for quite awhile. The bad news is, he's not going to do further testing (except for blood work) unless or until I do flare up again. So it's either remission or further testing/possible diagnosis - I'm happy to stick with remission for now! I'd like answers in the future, but as long as I can keep feeling this well I'm pretty good with that. It's hard to be super optimistic, given that I know flares can hit out of the blue, and sometimes I do find myself waiting for the other shoe to drop, or just wishing I had a name for the slumbering monster in my guts, but for the most part I'm doing well and enjoying it.
08-08-2011, 03:49 PM   #12
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it is good news that you are doing so well cat. keep it up and you will be fine. your finally in remission. and that is very good news. i hope it stays that way for you.best wishes

scott
08-08-2011, 03:55 PM   #13
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Thanks for sharing that Cat. It really helps seeing people put their stories together like that. I hope you stay in remission too. This in and out of hospitals and GP's is a nightmare if they cant diagnose you. So frustrating. Stay happy and well
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08-31-2011, 03:45 PM   #14
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Another update on me: I "graduated" from physical therapy today! I've been going to PT every few weeks for my hip arthritis. My therapist feels that I've made good progress and that I'll be able to continue on my own at home without needing to see her (she's about to give birth any day now too so I couldn't see her anymore even if I wanted to, although she did give me the option of seeing another therapist in her absence). My hip has been feeling better and better since I've been going to PT, and my therapist thinks that I'll continue to improve as long as I keep up with the exercises. So, hooray!
08-31-2011, 03:54 PM   #15
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Congratulations that is good news. So good to hear that things seem to going well for you at the moment. Long may it last!
09-01-2011, 01:59 AM   #16
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Fab news Cat!!! May it keep on keeping on hun!...

Onwards and Upwards!


Dusty. xxxxxxxx
03-07-2012, 05:35 PM   #17
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It's been awhile so I thought I'd give an update. I'm still in remission and it just keeps getting better and better. I've had a few tweaks in medications and am now feeling better than ever. I know I'll never be 100% like I was before I became ill, but I'm about 99.99% nowadays. I have to avoid some trigger foods and stress still can knock me down a bit and I will always be aware, in the back of my mind at least, that I've got an illness. But otherwise I'm great. I'm still not fully diagnosed, but both my GI and GP have unofficially said it's IBD, they're just not sure which type (Crohn's or microscopic colitis are the main suspects). They treat me as though I have IBD and I respond well to those treatments.

If anybody's curious, here's the list of meds and supplements I'm currently taking. These meds are being very good to me so I thought I'd share:

Prescription meds:
Asacol (to maintain remission of IBD)
Nexium (for GERD - I recently switched to Nexium from Prilosec and am so glad I did, the Nexium works far better for me - I just take one first thing in the morning and I don't reflux at all unless I eat really greasy fried food)
Zantac (also for GERD - I take this one at bedtime so that I don't reflux while I sleep as my 24-hour Nexium starts to wear off)
Amitriptyline 25 mg (to prevent headaches & migraines and to help me sleep, this one is also taken at bedtime)
NuvaRing (birth control)
Zofran as needed (for nausea - I rarely need it these days!)

Supplements:
Psyllium Husks (This has worked wonderfully for me. I take 1 teaspoon a day and it's reduced the # of my bathroom trips significantly. Even in remission I was having BMs 4-10 times per day, now it's 1-3 times per day because of psyllium!)
Vitamin D
Vitamin B12
Calcium
Cranberry capsules (to prevent UTIs)
Biotin (to prevent hair loss)
Folic Acid
Bromelain
Fish oil/Krill oil (Krill oil is expensive so I alternate between that and the less expensive fish oil)
Ginger capsules (again for nausea, and again I don't really need them but do take them daily as a preventative)

I am also trying to eat healthy and I exercise a minimum of 3x per week, mainly weight lifting with a little cardio and some yoga, and walking with my dog. And for the first time in my life I really enjoy exercise - I always hated it and thought exercise was tedious and hard before I became ill. Now that I know what it is like to lose my health, I want to do everything I can to keep myself as well as possible and I actually look forward to working out and I enjoy it! I feel great most of the time and just generally am loving remission. I recently went through a bit of a rough patch where I was on steroids (hydrocortisone suppositories for hemorrhoids) and was having a lot of stress so it was taking a toll in the form of me not sleeping well and not feeling as well as I had been, but I am off the steroids now and the stressful situations are resolving one way or the other and I'm doing really well again.

So don't lose hope, fellow undiagnosies! Remission is achievable, even when you're undiagnosed, and it's also possible to maintain remission and feel well for a nice long time. I've been in remission for probably close to a year now, it was about May 2011 when I started feeling consistently well so I was either in or very near remission around that time. I hope this can give at least one undiagnosed person some hope for the future. Remission is amazing and I hope everyone can join the remission club very soon if you're not already there!
03-08-2012, 10:30 PM   #18
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WOW! Excellent update Cat! Thanks for posting...

Onwards and Upwards!
Dusty. xxxxxxxx
03-09-2012, 12:41 AM   #19
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:Awesome Cat!!!! Great news-so happy for you!emot-waycool:
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03-09-2012, 01:08 AM   #20
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Great Cat! I'm happy for you.
03-11-2012, 05:13 PM   #21
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cat-a-tonic thats great news and hope for us all , i really hope u continue with this but pleeeeeese dont leave us u have soo much good infor and support lol xxx
03-11-2012, 05:20 PM   #22
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Don't worry, Fosters, I'm not going anywhere!
03-11-2012, 05:24 PM   #23
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phew hehe xx
03-11-2012, 05:28 PM   #24
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That really is great Cat. So lovley to hear good news
03-16-2012, 10:19 PM   #25
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Thanks for sharing! It's great to hear the updates....and it gives hope to the rest of us
09-29-2012, 05:58 PM   #26
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Update on me: I recently underwent a 24 hour pH impedance test as my GERD has been steadily getting worse, in spite of me taking meds for it (first Zantac, then Prilosec, now Nexium - both Prilosec & Nexium started out working great, but slowly lost effectiveness). So I had that test, which involved them inserting an NG tube which had sensors in it. I had to keep that evil tube in for a full day and night, and I was to take my usual meds (including Nexium) but I was also to eat my reflux trigger foods and I had to exercise as that always makes me reflux. It was not a fun day!

I just got those test results back, and the results seem to be pretty bad! (On a plus note though, finally I had a test where I got some real results!) My results say:

"There was a total of over 300 minutes of acid refluxate into the esophagus. The percent times were therefore quite high at 4.4% in the upright, 63% in the supine, and a total of 27.6% with normal being less than 1.3%. Total episode was 26 with the longest lasting over 300 minutes. Impedance; however, revealed significantly less total time. The nonacid reflux time was only 4.3 minutes. There was a total of 48 reflux events, which is just slightly above the 95th percentile of normal; 27 events were acidic, 21 events were nonacid, 21 of 48 reached proximally."

I think I understand all of that (Dusty or someone more knowledgeable, any input?). It seems to be saying that I reflux a lot of the time especially when I'm lying down and it's mostly acid and not so much nonacid. My hubby thinks that 95th percentile means "almost normal" but I think it means 95 percent above what is considered normal so therefore super bad and abnormal... is that right? Also, I don't know what proximally means, anybody know? Of course I had to receive these results in the mail on a Saturday so my GI isn't around to answer questions until Monday at the earliest, so hopefully someone reading this can help. Anybody?
09-29-2012, 06:02 PM   #27
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I agree with your interpretation that 95th percentile above normal is very abnormal, with most of the events involving acid in the supine (lying flat) position.

Please keep us updated after you talk to your doctor. My GI wanted me to do this test, as I also struggle with severe GERD and there isn't a single med that has ever helped. And I've tried ALL of them. Diet changes seem to have mostly eliminated my GERD symptoms though. I haven't had any issues for a couple of months now.
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09-29-2012, 07:45 PM   #28
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I am not in the least statistically minded.

I have dealt with percentiles and standard deviations when applied to intelligence quotients but not in regard to medical conditions but I will give it a shot. In my opinion your thoughts are correct Cat. When talking in terms of percentiles there is a norm and then deviations either side of that. To be at the 95% percentile means that the severity of your GORD is 95% worse than the rest of the population. For example the norm may be 50% with those at 50% experiencing perhaps moderate symptoms. Those under 50% have reducing symptoms until you reach a point that GORD is not present and those above 50% have increasing symptoms.

Please don't take my interpretation as gospel though!

What proximally means in this case is how far the reflux extends up the oesophagus. In your case it extended the full length of the oesophagus 21 times.

HTH!
Dusty. xxx
09-29-2012, 09:31 PM   #29
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Thank you Dusty! That does help. So if I'm understanding what you're saying, 50% would be the median, some acid reflux but not too bad. 0% would be no reflux ever, and 100% would be the worst reflux all the time. Since I'm at 95%, I'm pretty darn bad. Thanks for answering the thing about proximally too - so I refluxed up basically into my mouth then 21 times in 24 hours?? It didn't feel like it but maybe a lot of it happened when I was sleeping. The sad part is, I tried to sleep normally with the stupid NG tube in, but I just couldn't lie flat with that dumb thing, it was so uncomfortable so I propped myself up on a bunch of pillows, which usually makes my reflux less awful. So I hit 95% and the worst of it while I was lying down, even though I wasn't fully lying down! Eek!

KatyBuckeye, I will update in this thread once I've talked with my GI about what this means for me and where I go from here. I've made some dietary changes too but seemingly benign things still set off my reflux - bananas even give me the vurps! I had a really bad bout of reflux and gastritis last week, I ate spaghetti which is usually fairly safe for me, but the tomato sauce really set me off and I had gastritis pain for days. The gastritis is worse than the GERD in my opinion (although GERD is certainly no picnic either). I've been eating super bland foods ever since and am kind of terrified to eat anything with flavor right now. My stomach is such a jerk! Anyway, I'm rambling again. I will keep you posted on what my GI says. If you decide to do the pH impedance test - be warned, it's not pleasant. Having an NG tube in for a full day, having to sleep with it, and particularly having to eat trigger foods with it it just miserable. Swallowing anything with that tube in caused pain from nostril right down to stomach! My sinuses went nuts too, they did NOT like having a foreign object in my nose and as a result my nose dripped constantly all day. I literally went through a whole box of tissues that day. But, I do think it was a worthwhile test to have and I'm glad I got a worthwhile result from it. I really wouldn't want to do it again though! And at least I didn't have to do prep or drink anything nasty for it. Anyway, I hope your GERD continues behaving itself, and I'll keep you posted on what I find out.
09-29-2012, 09:57 PM   #30
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Essentially yes Cat. I guess it doesn't really matter where the norm is set because your result still places you at the 95% percentile based on their criteria. They may set it up like a bell curve so the bulk of sufferers fall at the 50% and then there is drop off either side of that or they may set the norm at 0, with 0 being no symptoms, and rise from there.

Yes, 21 times in 24 hours. The results will be skewed due to the fact that you slept in a propped up position and that action is a well known treatment, amongst the medical profession, to help reduce reflux.

Dusty. xxx
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