Crohn's Disease Forum » Your Story » Waiting for diagnosis...


01-25-2018, 12:49 PM   #1
MeggieLee
 
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Waiting for diagnosis...

Hello, all. This looks like a fantastic, welcoming forum. Thanks to all for creating such a great resource!

I'm currently in a situation where my GP strongly suspects I have Crohn's or ulcerative colitis, due to my symptoms and blood and stool cultures. My symptoms came on me suddenly on Dec. 28th and haven't left. Feeling really weak and fatigued at this point, and have lost over 15 pounds. I've had to cancel every social event over the last month, including a Disneyworld trip we'd planned with my toddler, and I've also missed a ton of work. Scared to venture more than 15 feet from a toilet. <-- (feeling sorry for myself, my family, and freaking out about work). Sorry, pity party's over now

Unfortunately, the next appointment with the recommended gastroenterologist isn't until May! I'm doing all I can to get in sooner, of course.

In the meantime, however, is there anything that anyone can recommend doing? I'm freaked out that my immune system is tearing apart my gut and potentially causing permanent damage while I'm waiting for the wheels of the American healthcare system to turn. My GP has only recommended Maalox and Pepto Bismol and has prescribed Zofran.

Please excuse my ignorance, and I hope that it's OK that I posted without an official diagnosis... I'm a bit frightened at this sudden turn my life seems to be taking and would be appreciative of any and all suggestions on how to handle it.
01-25-2018, 04:39 PM   #2
Scipio
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Unfortunately, the next appointment with the recommended gastroenterologist isn't until May! I'm doing all I can to get in sooner, of course.

In the meantime, however, is there anything that anyone can recommend doing? .
May? That's ridiculous! That's a long time to suffer like that without any help or medication from a GI. You've already lost 15 pounds in one month. How much of you is going to be left after five months?

The main thing I can recommend is to change doctors. Philadelphia is a big city with some good IBD centers. I suggest you get into one of those right away.

https://www.pennmedicine.org/for-pat...isease-program
http://hospitals.jefferson.edu/disea...s-disease.html
http://www.drexelmedicine.org/patien...d-specialists/
01-25-2018, 06:34 PM   #3
ronroush7
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Welcome. I agree with a second opinion. You can also try a food diary to eliminate foods that don't agree with your stomach. I hope you can get in to see a doctor soon and get some relief.
01-26-2018, 05:58 AM   #4
erk
 
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Hi MeggieLee, it might be that they book an appointment in, but continue to seek an earlier opening once that one is booked, that happened to me as my appointment jumped forward several months when they found an opening, fingers crossed something like that may come your way too.

Maybe it would be worth taking a complete multivitamin, to cover your bases? I gather with blood loss people can become low in iron and B12, so some supplements containing those might help?
01-26-2018, 01:56 PM   #5
MeggieLee
 
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Thank you all so much for your responses. Yes, I am definitely going to continue to call, and call other doctors, and I'm confident I will get in somewhere before May. Squeaky wheels and all that... however, that was the first appointment on the books despite my pretty extreme symptoms, which I found really shocking!

I'm sure I'm nutrient deficient right now-- I'm bruising really easily and am very pale. But vitamin supplements are unfortunately difficult on my stomach even at its best moments-- although I have no issues swallowing pills, they sometimes come back up and often cause a lot of nausea. I'll see if I can find B-12 in liquid form, and, honestly, I'll worry about the iron once I get my symptoms a little more under control-- it's just too hard on my stomach. But thank you so much for the suggestion. It's a good reminder of how this affects the rest of my body, not just my gut...

Thanks again for your responses and support!
01-30-2018, 04:04 PM   #6
ilgirl
 
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I'm sorry to hear about your trouble. I hope that you're able to get in to a doctor sooner. I also initially had trouble getting in, but my regular doctor got involved and ordered me a CT scan. When that came back abnormal, I called the GI doctor's office and told them it was abnormal, and they got me in with one of the other GI doctors on a cancellation. I ended up really liking that doctor and have stuck with him.

Regarding suggestions, I am still learning too, but I've recently been working on a low-residue diet. It helps me a lot. I'd also suggest looking at the CCFA website, as there is a lot of good information there, and you may be able to create a list of questions for when you are able to see a doctor. Good luck!
02-02-2018, 01:10 PM   #7
MeggieLee
 
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Thanks, everyone. Just wanted to update to let you know I got in to see a doctor yesterday! She was really nice, and we have a colonoscopy scheduled for 2/12.

The story of how I got an appointment was basically telling everyone I know about my current 'issues' and asking if they knew a GI doc who could see me. It turns out the father of one of my students is a prominent gastroenterologist in the area. So everyone I know now knows about my toilet habits, lol...
02-02-2018, 02:07 PM   #8
cmack
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Hey, whatever works. I'm very open with people too, it's nothing for us to be ashamed of. I'm wishing you the best of luck Meg.
02-06-2018, 12:27 PM   #9
MeggieLee
 
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Thanks all. I have my CT scan today and the colonoscopy next week. Not looking forward to either but, at this point, desperate to get to the bottom of this (baaaad pun ). Haven't been able to get to work for over a month now-- although I'm thankful that I've been able to get some things done from my computer at home.
02-06-2018, 12:41 PM   #10
ronroush7
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My best to you.
02-06-2018, 01:57 PM   #11
cmack
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Keep in touch Meg, we are here if you need someone to talk to. I hope the tests bring you answers.
02-15-2018, 03:25 PM   #12
MeggieLee
 
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Hi folks,

So I had my colonoscopy and endoscopy on Tuesday. I was really grateful that they were able to fit me in but the downside was that an inexperienced physician performed the procedure. At first, I was just a bit upset because my mouth was cut up and bruised and my throat was very sore from the endoscopy (made me wonder what *were* they doing to me when I was unconscious?). But then I read the report and, while I had been told that there were some irregular findings from the endoscopy but the colonoscopy looked good, I saw that he was unable to look at the terminal ileum. Am I wrong, or should this have been done?

I've currently been off work for about 6 weeks, but am starting to get some symptom relief from activated charcoal and a whole lot of probiotics. So I'm planning to return to work next week and just try to take things easy.

Although I am INCREDIBLY happy and grateful that I'm starting to feel better, I really want to figure out what is causing these extreme symptoms.

I have a past history of anal fissures and abscesses, as well as something that was termed 'chronic appendicitis' that was resolved surgically. While on the one hand I'm very happy to not have an IBD diagnosis, I'm also confused and frustrated as to what's going on with my body, and I'm concerned that lack of diagnosis/treatment will contribute to long-term harm.

And I'm not sure how to proceed from here...

Thanks again for all your help and support. This board is really great-- I've read a lot of the threads and it's a real wealth of information.

xox
02-15-2018, 03:31 PM   #13
MeggieLee
 
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PS-- CT scan showed no blockages or abnormal dilations...
02-15-2018, 03:53 PM   #14
cmack
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Glad to hear you are finding the forum useful. I am hoping you get more answers soon MeggieLee.
02-15-2018, 10:13 PM   #15
MeggieLee
 
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Thanks! I hope so, too.
02-15-2018, 11:58 PM   #16
Mag3451
 
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Hi meggie! This link may give you some more info on the colonoscopy not reaching the ileum. http://www.crohnsforum.com/showthread.php?t=12103 I have also researched a little and found online that looking in the terminal ileum may not be necessary when only doing a cancer screen in a typical healthy person but should be done when looking for any sign of IBD or unexplained bleeding.
02-17-2018, 03:48 PM   #17
Lynda Lynda
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Meggie Lee, I am wishing you the best. There are really great people here sharing their own personal stories and also offering some great advice and resources. All this should help you on your journey. I never asked questions in the beginning, but now I am more assertive and I try to ask questions and get them answered. ( I have suffered from Ulcerative Colitis for 20 years. ) Lynda
02-21-2018, 11:49 AM   #18
MeggieLee
 
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Thanks so much, all. I am really a bit flummoxed. Apart from the terminal ileum not being able to be looked at, I also had an endoscopy that showed chronic gastritis and duodenitis. Yet, when I spoke to the doctor she said it was normal and IBD was ruled out. So, of course, the diagnosis is ideopathic IBS-D. None of this sounds like IBS to me (I had post-infectious IBS before, and it wasn't fun, but the symptoms were very very different from this-- ie, I had mostly very uncomfortable bloating with IBS but little weight loss or loss of appetite, no bleeding. I also was able to work and exercise normally. Right now even the thought of exercising is like HAHAHA, NOPE!). In any case, losing 25 pounds in 6 weeks and being unable to eat or function is DEFINITELY not normal!

In the meantime, though, I've been following strictly a liquid diet (and not the fun liquids, haha!) with lots of probiotics and some activated charcoal and my symptoms are continuing to improve. Thanks for the B12 suggestion earlier! I finally got around to ordering/taking the supplements and, wow, it's like I have a brain again!

I just wish I understood what's going on in my body because I want to heal and to never go through this again, and that's hard to do if I don't know what's happening. I think I'll seek a second opinion somewhere else and hopefully won't have to go through all the tests again.
02-21-2018, 12:59 PM   #19
cmack
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Good luck Meg, I hope a fresh set of eyes can get you on the right track.
02-21-2018, 06:12 PM   #20
Lynda Lynda
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Meg. They said I had IBS too, but later on it was really IBD. A second opinion may be the route for you to take, at least give you some peace of mind. My opinion of CT Scans is that they cannot always detect things. I am not a doctor and many, many folks here have way more experience with such things. Take Care.
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