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Crohn's Disease Forum » Your Story » Hi all! Back after 3 years.


05-03-2014, 12:23 AM   #1
happyballerina
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Hi all! Back after 3 years.

Hello again! I came to this forum 3 years ago, perhaps some of you remember me. I'd like to reintroduce myself and share some updates on my situation; apologies in advance if this post becomes lengthy, and for poop talk (but you are all used to that so...lol)

I was undiagnosed when I first came here and, for all intents and purposes, I'm still undiagnosed! Part of that is my fault, I guess. After the colonoscopy and some other tests (SBFT? Don't remember honestly...) they ended up pretty much saying that everything looks fine and it's IBS. I remember that as I was heading out from that appointment, the GI tells me that it's probably just lactose intolerance and that all I need to do to find out is get a milkshake from McDonalds and see how I feel after. Anyway, I felt completely defeated; anytime I brought it up again my mom would remind me that they didn't find anything wrong, and we never ended up doing anything more about it. I gave up looking for answers because I was tired of wasting anyone's time and I was also scared that people would start thinking I was a hypochondriac [I'm not]. If memory serves me well, the worst of it kind of mellowed down after a while and I was able to generally go about my life without problems so I figured they must have been right.

That's actually why I stopped visiting this forum in the first place - I was trying to just "ignore" my GI issues and not read too much into them. I figured I would at least spare myself the trouble of going through more tests, worry, etc.

Since my last major 'flare' (can I call it that if I'm undiagnosed?), I've not had any other big ones. In the last three years I have had plenty of GI issues, but they were manageable for the most part. Mostly bloating, gas, occasional D, a lot of mucus, and blood only once in a blue moon. The one stretch of time where I had fewest problems was a 4-month period in Fall 2012 where I ate very little; even then I had problems here and there but it was all-in-all the best I had ever felt. Last spring I cut out gluten in an attempt to ease my GI issues, but I can't say whether that helped or not. I think it did a little, but it was nothing very clear. I have since reintroduced gluten into my diet.

Currently I am dancing in Russia...if you remember me from last time I was here, you might remember that I was very concerned about how my GI issues would affect my ballet. Fortunately I have been able to make huge achievements despite them and I am really proud of that I got into one of the top ballet schools in Russia and I am currently still here. I finish in June, however I will no longer be pursuing ballet professionally after I finish here. It's the best choice for me, the one that I am sure will make me happiest in the long run. Sadly, while it's not entirely because of my GI problems, that did play a significant role in my decision to leave the professional world.

For the last month...two months maybe?...I have been in a bad flare up again This has prompted me to come back here. I have to say, it is hard enough to go through a flare, let alone without a Dx or anything to help, but the fact that I am "alone" here in Russia makes it that much more difficult. I have not told our school doctor, my mom and I feel it would be best to wait until I come home. On my really bad days, I've been having to dodge questions from the nurse as best I can when I ask for permission to not go to class because of a stomach ache.

All my symptoms are back full force. Diarrhea, mucus, blood. I am now going upwards of 20 times a day on my bad bad days. Sometimes it's not diarrhea, sometimes it's loose and sometimes it's formed. My body has also decided to bring some new symptoms into the mix, just for sh*ts and giggles, you know The pain I am having now is kind of new; I had pain before but it was nothing like this. This hurts. Urgency is way increased, too. I fear that I won't make it in time...and with good reason, too, because I have not made it a couple times I have had "wet farts" before but they, too, are on a whole different level now...sometimes I will have to run to the bathroom only to have gas and what I think is mucus. I don't trust farts anymore, and besides, I can no longer tell the difference between the feeling of needing to pass gas and the feeling of needing to have a BM. But the most significant new thing is having to go at night. That did not happen until now.

There isn't anything I can do for now, so I'm happy I at least can come here for support and people that totally get it

When I go home I will of course have to go back to the doctor. I'm going to go to my PCP and not my GI because I love my PCP, she's great, and I also don't have to make an appt. to see her (whereas an appt. with a GI might take a long time). She has never treated me for GI problems before, but it'll be a good starting point. My mom asked me to send her a list of what's going on so that she can take it to her; that way she can know what's going on beforehand and maybe she'll have some suggestions in the meantime.

Anyway, I'm glad to be back! I hope you guys can forgive me for how long this post was and for my rambles :P
05-03-2014, 02:20 AM   #2
Grumbletum
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Welcome back, but I am sorry to hear you are feeling poorly again :-( I am also sorry to hear you are giving up your dancing. But I can see how doing such a physically taxing job would be almost impossible in full flare. I guess you are really going to miss it.
I hope you get someone to properly listen to you and investigate your symptoms when you get back home. Have you got plans work wise?
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Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
Helen x
05-04-2014, 06:28 AM   #3
happyballerina
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Thanks Grumbletum! I have come to terms with my decision to no longer dance professionally - I realized a few weeks ago that sometimes passions are better enjoyed purely as passions and not as careers; with any job, no matter what it is, there are good things and bad things...and I realized that I don't want any bad things tarnishing the role of ballet in my life. That was really what made me sure that my decision was the right one and I'm quite happy with it It's not solely because of my GI issues - in fact I started thinking about it before I started really flaring again - if it were I would do anything to not let it stop me. As things are, though, I feel really relieved that I can finally put my health first. I've never done that before, lol.

Work-wise, I do need to make some money but I'm still debating what the best plan will be for me, seeing as my first priority will be my health when I get back. I wanted to work over the summer but I don't know...maybe I can combine it with school in the fall. I registered for a full-load at the state university near where I live and where I completed some credits already, it's convenient and if I have health issues it's better as I'll be living at home with my parents (I'm 21 now). But for spring I'm going to apply for Emory University, I want to go there so much and with my GPA (3.97) I should get in!

I hope they can help me with this GI stuff, too! I remembered that what I had done last time was a CT scan and not a SBMT. I don't know if I feel optimistic about getting any answers due to how things went last time, but at the very least it's good to know that there are plenty tests left still to do. I wonder if they'll do a colonoscopy again...I suppose there's a possibility that, three years later, they might find inflammation that wasn't there before. :?
05-04-2014, 06:54 AM   #4
dave13
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I hope you get some answers when you get back.Keeping your PCP in the loop is a good thing.The more accurate information she has,the better she is able to help you.She should be able to recommend a good GI.

If it takes so long to see a GI...can you make an appointment now,before you return?Perhaps that would cut down on the wait time.

Good luck!
05-04-2014, 06:54 PM   #5
happyballerina
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I hope you get some answers when you get back.Keeping your PCP in the loop is a good thing.The more accurate information she has,the better she is able to help you.She should be able to recommend a good GI.

If it takes so long to see a GI...can you make an appointment now,before you return?Perhaps that would cut down on the wait time.

Good luck!
Thank you Dave! I had thought about making an appointment in advance with a GI, but I figured since I have to see my PCP regardless when I get back, I would have her take a look at it first and direct me from there. My PCP's office actually functions as an urgent care clinic but she does take on regular patients as a PCP - so, I don't need to make appointments (just walk in) and since they are equipped to deal with most minor emergencies, they have access to some equipment/testing that a normal doctor's office might not. Plus, I really like her and want her to be in the loop

I don't know if it will take a long time with the GI - I don't usually have problems scheduling appts. with specialists so I suppose I have no reason to assume there would be a long wait time. Hopefully my mom can go to her this week; maybe she'll tell me right off the bat to go to a GI! In that case I'll do as you suggested
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