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Crohn's Disease Forum » General IBD Discussion » No longer undiagnosed - kind of shocked


08-23-2014, 05:11 PM   #1
happyballerina
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No longer undiagnosed - kind of shocked

Even though it's always been pretty clear that I have IBD since my symptoms started three years ago, I'd been undiagnosed this whole time. Yesterday I did another colonoscopy and what do you know! As soon my GI doc inserted the scope he could immediately see the inflammation/ulceration and told me he was very glad that we went ahead and did the scope after all (I had been really reluctant to do it). I was just so sure that they wouldn't find anything that when I woke up and was told they DID find something and that I DO have IBD, I almost couldn't believe I had actually woken up. I almost feel like I'm still processing it.

I'm hardly upset, though. It sucks that it's chronic and that my chances of getting cancer are increased and that the disease itself just sucks, but at least I KNOW! The relief and comfort of that overpowers any negative feelings I have at this point. Surely this might change but, for now, I'm ok.

Waiting on biopsy results now to help decide if it's UC or CD as we're not quite sure at this point. Pretty much everything (the mouth ulcers, type of pain, my symptoms, my history, etc.) points to Crohn's except that the inflammation and ulceration my GI doc saw on the scope had some UC-like qualities that make him wonder which it is. I need to schedule a pill cam too to look for Crohn's in my small intestine and do some more blood tests to help differentiate.

I really just wanted to share that with you guys over here. I'd been mainly posting in the undiagnosed club which is a wonderful, wonderful resource and it absolutely helped me this entire time. After three years I began to think I might never know and maybe it was all in my head but luckily I ended up in the hand of doctors that pushed for a diagnosis for me and now I do know. So, I am just thankful for that and happy that I can start treating it now. I am so looking forward to getting better and start feeling good again
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21 years old

Dx IBD August 22, 2014
Dx Crohn's Disease September 10, 2014

Current IBD meds: Entocort, Humira
Past IBD meds: Rowasa

Future doctor
08-23-2014, 05:22 PM   #2
LodgeLady
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I am soooo happy for you!! It's like now someone actually believes you!! I would never wish the Crohn's disease on anyone. But I know the peace of mind of a firm diagnosis brings such relief. Now you can plan on a more effective medicinal management path.

I just had an Upper GI with a small bowel series yesterday. I am really hoping a definitive diagnosis can be made. Again, I get frustrated in that at times I feel like no one is believing me. I am hoping I get some answer for my pain and GI symptoms. I'm not asking for Crohn's, I just want there to be some answer.

Here's praying you respond quickly to what ever treatment you start. Now is the beginning of another journey towards remission...


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Entocort , Prednisone, Pentasa, ,Protonix, Xifaxan


Lots of learning.

Lots of praying.....

08-23-2014, 05:59 PM   #3
2thFairy
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YaY! Having a diagnosis can make a day brighter, this is true! I was pushed aside for almost 20 years before getting a diagnosis. I understand the frustration and the excitement. Even though no one *WANTS* IBD, sometimes it is such a relief to finally hear those letters and know that treatment can begin.
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Total colectomy with ileostomy featuring Sideshow Bob since January 2012

"The colon seems an unlikely candidate for dramatic effect, but now and then it serves that purpose well." The Associated Press Guide to Punctuation
08-23-2014, 09:29 PM   #4
Malice67
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YaY! Having a diagnosis can make a day brighter, this is true! I was pushed aside for almost 20 years before getting a diagnosis. I understand the frustration and the excitement. Even though no one *WANTS* IBD, sometimes it is such a relief to finally hear those letters and know that treatment can begin.
at least people here GET what you just said! No one else got it when I was relieved to get the diagnosis... some of the other things they were considering were much more life-threatening...
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Diagnosis: Crohns of terminal ileum, GAVE ("watermelon stomach")
Current medication:
daily: Pentasa (500mg, 4x/day), probiotics, calcium, vit D, sublingual B12

as needed to control anemia: iron infusions (using Venafer since I had allergic reaction to Injectafer)
08-23-2014, 11:15 PM   #5
Khaley
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I absolutely know what you mean. There's nothing more frustrating than knowing you're sick and getting no answers. I was tremendously relieved and happy when I was finally diagnosed seven years ago. The way I looked at it was, the diagnosis didn't make me sick - it just provided a treatment path. Yay for you. It sounds like you have a good doctor who is looking out for you.
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Cholecystectomy in 2005
Diagnosed with Crohn's colitis and ileitis 2007,
15cm stricture in distal ileum 2014
Small bowel resection with 3 strictureplasties Aug. 2014
Currently on Azathioprine 150mg, Remicade
08-24-2014, 02:58 AM   #6
Cross-stitch gal
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Glad to hear that you finally got some answers. I know that place where you want them to find something wrong so they can treat you, yet hoping nothing's wrong. I've been there. Hopefully now they can figure out how to start helping you on your way to feel better. Please keep us updated on how things are going.
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Diagnosed:
Ulcerative Colitis/IBD 1996, Iritis 2001, Ulcerative Proctitis 2013, Indeterminate Colitis 2016, Remission 2017, Hand Eczema

Current Meds:
Pentasa 1000mg 2xday or Mesalamine DR 1.2gm 2xday, Canasa Suppositories (when needed) 1000mg 1xday, Tylenol 3 with codeine 300-30mg (when needed)

Non-Meds:
600+D Calcium 2xday, Multivitamin, 65mg Iron 1xday, Fish Oil 1000mg, Vitamin D3 5,000 I.U., Eye Drops 2xday


UP Support Group http://www.crohnsforum.com/showthread.php?t=68350
08-24-2014, 09:39 AM   #7
happyballerina
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Many thanks to you all for your support - and it is just priceless to be among company that "gets it".

I have three day's worth of pred to get me through until I can get hold of the mesalamine I'm supposed to be on, but I'm so hesitant to take it. It's only three days, so I'm not worried about getting any crazy awful side effects; it's more just that if I have Crohn's in my small bowel, too, I want them to find it now when I do the pill cam so that I can treat it all properly from the get-go, and I'm "scared" that the prednisone will treat it so well that it won't be seen by the pill cam. That probably sounds stupid, I know...

I promise it's not, though. I JUST met my deductible with that colonoscopy, so I want to do all the tests I have to have now, before the end of the year. So I want to avoid having to do another pill cam after the new year because we missed something. Seeing as the mesalamine will treat only the disease in my colon, anything that goes missed anywhere else will surely continue to bother me even once the colon is ok. And if that happens, that means: more testing...another pill cam. And, knowing my luck, chances are we'll only get to that after the new year, which means way too much money that I don't have being spent.

So I've got these three pills sitting on my desk and I don't know if I should take them or not. Tomorrow is already Monday, I might be able to get the mesalamine within a day or two. On the other hand, the pred will provide some temporary relief. But then I don't want it to cause any false impressions when we look at my small bowel...

*Sigh*
Sorry for the rant :P It's not even about something that deserves a rant lol.
08-24-2014, 02:01 PM   #8
Malice67
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*Sigh*
Sorry for the rant :P It's not even about something that deserves a rant lol.
Yes it is!! The unknown, the $$$$$ we spend, the time... it drives us all crazy. You are allowed to rant. I understand what you said because when this all started for me was when they tried to hospitalize me in the beginning of February due to critically low hemoglobin for no known reason... so they cut me off of NSAIDS thinking that it may be causing bleeding... but didn't do the colonoscopy / endoscopy until late March, and the Pill Cam not until mid April... so now there is still some question of how much healing happened before they could see the damage. Still pretty sure it is Crohns and not the NSAIDs because saw same results in June as March so if it were the NSAIDS, there would have been even more improvement in three more months. But the delay in the initial scope an PillCam does cause my GI to say my scopes are "consistent with Crohns" although he will say that I HAVE GAVE ("watermelon stomach"). In a perfect world, they could do all the tests immediately.

but I can't imagine only three days of prednisone would change things enough for Pill Cam --- have you asked him?
08-24-2014, 05:37 PM   #9
LodgeLady
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Yes it is!! The unknown, the $$$$$ we spend, the time... it drives us all crazy. You are allowed to rant. I understand what you said because when this all started for me was when they tried to hospitalize me in the beginning of February due to critically low hemoglobin for no known reason... so they cut me off of NSAIDS thinking that it may be causing bleeding... but didn't do the colonoscopy / endoscopy until late March, and the Pill Cam not until mid April... so now there is still some question of how much healing happened before they could see the damage. Still pretty sure it is Crohns and not the NSAIDs because saw same results in June as March so if it were the NSAIDS, there would have been even more improvement in three more months. But the delay in the initial scope an PillCam does cause my GI to say my scopes are "consistent with Crohns" although he will say that I HAVE GAVE ("watermelon stomach"). In a perfect world, they could do all the tests immediately.



but I can't imagine only three days of prednisone would change things enough for Pill Cam --- have you asked him?

I don't think 3 days is long enough either. I am also in the boat of " If It quacks like Crohns, walks like Crohns , therefore it must be Crohns ." I am hoping the results of my Upper GI gives some DEFINITE diagnosis, whatever that may be . Happy for you Ballarina!!
08-24-2014, 07:38 PM   #10
happyballerina
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I was also thinking that the three days wouldn't do much but it still feels "risky" if you know what I mean. And no, I didn't get to ask him about it because the reason I got the pred in the first place is bc I can't get ahold of him until tomorrow. So I just texted my GP, whom I also work with/shadow currently and who knows my situation well, since she actually offered me a short course of pred earlier which at the time I declined. I told her the situation and she just called it in for me but I didn't want to call her back to ask about it because it was her day off. So I was just happy that she even did that for me on her own time. I wouldn't have expected that if I wasn't so close to her.
But alas - I made it through the day without the prednisone after all. Yes I did have pain and urgency and everything as usual (obviously) but I managed. Tomorrow is Monday and I'm supposed to call my GI doc anyway so I can mention it to him then. Although with any luck, my insurance will have applied the scope by then and I can just get the mesalamine without a fuss :-P
Do any of you get floaty and "soft-edged" poop? I've been getting that consistently since the scope and I'm wondering why. Usually it would be suggestive of steatorrhea, so it might just be that and it's only a coincidence that it started after the scope.
I'm exhausted today! I'm blaming it on the IBD...I can officially blame stuff on that now, lol


08-24-2014, 09:32 PM   #11
2thFairy
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Having a colonoscopy also involves a lot of air that is pumped into the colon, so that could very likely be the reason for your floaty and soft-edged turdmuffins.
08-24-2014, 09:58 PM   #12
happyballerina
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Omg. Turdmuffins. HA! That just made my day

You're right, I didn't consider that. That very well may be the reason! Post-colonoscopy air aside, the procedure itself really left me feeling rough in there. Less so now than yesterday and the day before, but wow. It must have irritated my already-inflamed colon

So this is funny...we were talking about the ALS ice bucket challenge during dinner and my mom starts suggesting that I should get one going for IBD...however she stopped herself short, I said NO WAY, and we all started laughing hysterically! Can you guess why...? Lmao. Although we totally DO need to do something like that! Just...not with a bucket full of anything
08-25-2014, 05:48 AM   #13
StarGirrrrl
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I wouldn't worry about your BM's too much, a colonoscopy is a huge toll on the body in alot of ways. It'll be a little while before things go back to your normal.

I remember my last c scope, even though my periods were regular I wasn't surprised when the day after scope I started even though it was 2 days early! After everything my system went through I figured it might happen and it did.
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2006. Tummy issues (more IBD than IBS).
2009 joint pain/worsening tummy issues.
CRP 20-36 2006-now. C3/C4 inflammation markers huge,
2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
Caught by pure chance!
Cause currently unknown but suspected CD.

Waiting on blood & stool results from January.

Hoping to stop anaemia treatment soon & lower B12 daily dose!
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