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02-11-2016, 11:16 PM   #1
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Undiagnosed - Can it be a type of Crohn's

Hello! I'm new to this forum, but I've actually been lurking for a little while now. I've been thinking about joining and as you can see I've finally done so. :-) I hope I'm posting this in the right place and correctly-- I really apologize if not!

I also apologize in advance for how long this post will probably turn out to be. I would really, really appreciate any type of advice or help at all as I'm just at my wit's end...

The symptoms I'm experiencing are nausea (constant, no vomiting), abdominal pain that takes place in the mid upper part of my stomach. It can also sometimes happen in my lower abdominal region, and towards the left of the abdomen. The pain can be dull, stabbing, sharp, or knawing.

I've lost an extreme amount of weight, and I continue to lose weight every week. I really can't afford to lose anymore so it's very concerning... As well as losing weight, I've also lost my appetite. However, when I have those occasions where I do have an appetite I'm very limited on what I can eat. I have some food that I call my "safe food"-- they're plain bread (like bagels, toast, etc), yogurt, and oatmeal. I absolutely cannot eat anything fried, fatty, greasy... it's like an invitation to pain. I'm okay with drinking most things-- not some types of smoothies depending on the fruit in them and what's all involved in them-- but I can't drink too much at one time.

I get cramping at times that becomes so bad that, if I'm standing, I have to hurriedly reach onto something or actually fall onto the floor it's so painful. The cramping sensation is one that I can't really pinpoint where it's at. It's mainly towards the left part of the abdomen, but I do believe I've felt it in the lower mid section of my abdomen as well.

I'm constipated... pretty severely... but I can't tell if that's because I don't eat very much or if I really am just. well. Constipated! When I do manage to go (which is once every blue moon), the stool is very dark and I've seen blood.

Some other symptoms I experience, which I'm not sure are related or not, are extreme fatigue, joint pain everywhere-- I have arthritis in my back-- and general body weakness.

I also do not know if this is important, but I'm deficient in some vitamins such as D and B12, so I get weekly B12 injections that help at least a little. I also take multivitamins and vitamin c gummies because they're easier to get down than pills.

I got the colonoscopy and the endoscopy both done back in July 2015, but my symptoms were not quite as severe as they are now. The results came back fine, however there was some bleeding in my colon. I was prescribed Prevacid. A few months later as my symptoms persisted, my gastroenterologist ordered a gastric emptying study which also came back normal. The CT scan of the abdomen came back fine, and I am due to now do a barium XRAY of the lower intestine, I believe...

It's the last thing they can think of, and frankly I do not think they want to help me anymore. I've asked them if they thought it could be Crohn's, since they aren't offering up any ideas as to what could possibly be wrong with me. I was told by a physician's assistant today that it was not possible because the colonoscopy back in July 2015 would've shown inflammation, and it can only show up there. Is this true? Couldn't I possibly have a different type of Crohn's, Gastroduodenal Crohn's? I've been researching every possible stomach disease, and I've identified with it so much. But I was told flat out that Crohn's was impossible by her and no one is offering any ideas as to what it can be. I'm just feeling so lost.

I know that so many people go through this, just like I am, and it's so frustrating! I've read so many stories like mine... so I know I'm not the only one at least. I hate how others go through this so often. I'm 19 years old, and when I see others my age doing "normal" activities that I should be able to do, and eating normally... it makes me feel horrible even though I know it's not my fault! Even worse when I don't know the cause!

I'm sorry this turned out so long! I hope I provided enough information and didn't make this confusing at all. Thank you for taking the time to read it, I really appreciate it so much.
02-11-2016, 11:40 PM   #2
ronroush7
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Don't apologize for it being so long. The fatigue , arthritis and joint pain are some symptoms that people with IBD can experience. Have you had a fecal calprotectin? It is a stool test that can measure inflammation. You mentioned b12 shots. I get them once a month and take iron and a multivitamin. I wish you the best. Let us know how you are doing.

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02-12-2016, 12:32 AM   #3
JaimeM
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They can do lab work that shows if you have crohns too. It's an ibd7 panel I think is what it's called. It comes back positive on like 80% of patients with crohns or uc. Have they checked you for h pylori? Sometimes that can cause the cramping and nausea if you have an ulcer too. There are a lot of different things that it could be unfortunately.
02-12-2016, 02:01 AM   #4
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Im so sorry you are going through this. It sounds like crohns to me (not a doctor) . I had a clear colonoscopy but still had crohns . It was in my terminal ileum so didnt show up on the colo. Mine was diagnosed by scan. If you cannot get the help you need from these docs then get a second opinion,as clearly something is going on.. best wishes and plz keep us updated on how you get on. 💕
02-12-2016, 04:50 AM   #5
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<P>Hi there. They have also said to me its not Crohns even though they have only done a colonoscopy. I am due to have an upper endoscopy soon and my consultant is pretty sure it&nbsp;could be Celiac. I have all the same symptoms as you except I have diarrhoea instead of constipation. Have you been tested for Celiac? x</P>
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02-12-2016, 12:21 PM   #6
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Thank you all so much for reading about my problem and offering your advice! I am so, so grateful.

ronroush7 said:
Don't apologize for it being so long. The fatigue , arthritis and joint pain are some symptoms that people with IBD can experience. Have you had a fecal calprotectin? It is a stool test that can measure inflammation. You mentioned b12 shots. I get them once a month and take iron and a multivitamin. I wish you the best. Let us know how you are doing.
Thank you! I was aware that joint pain could be a symptom of IBD, but I didn't know arthritis could also be a possible result of it. That's good information to know, thank you! No, I haven't had a fecal calprotectin done... that should probably be my next step. I'd be almost scared to ask my current gastroenterolgist about it however (that sounds silly probably haha), so I think I'm going to just have to switch doctors!

I hope the B12 shots are helping you a bit like they're helping me. I definitely notice a difference when I skip a shot. I haven't had my iron checked in a long while-- I'll see if I can get it checked soon. I hope your levels are fine! I'm sincerely wishing you the best as well, and thank you so much for the help! I really do appreciate it.

JaimeM said:
They can do lab work that shows if you have crohns too. It's an ibd7 panel I think is what it's called. It comes back positive on like 80% of patients with crohns or uc. Have they checked you for h pylori? Sometimes that can cause the cramping and nausea if you have an ulcer too. There are a lot of different things that it could be unfortunately.
Yes! I've read some things about that... I've been doing some intensive research since I've discovered if you want some help I guess you gotta do it yourself mainly, huh (Something we've all sadly discovered)! I'm not sure if I've gotten an ibd7 panel, but I could be forgetting in the midst of all the blood work they've tested. I'll have to check my labwork site and see if I can find it anywhere. I asked my mom if I was checked for h pylori and she told me I was, so I guess that's probably a negative. I'm guessing I'm probably due for another endoscopy/colonoscopy, I just think it's weird that my current gastroenterologist never suggested it because my last one was (as I've said) in July 2015, I've gotten much worse, and it was actually a different gastro who did my procedures. I switched gastroenterologists after the procedure because he was... I don't know how to put it without sounding rude but... unprofessional and uncaring.

Thank you for your suggestions and help!

mandyk said:
Im so sorry you are going through this. It sounds like crohns to me (not a doctor) . I had a clear colonoscopy but still had crohns . It was in my terminal ileum so didnt show up on the colo. Mine was diagnosed by scan. If you cannot get the help you need from these docs then get a second opinion,as clearly something is going on.. best wishes and plz keep us updated on how you get on.💕
I appreciate it so much, thank you! Getting support like this is really helping me emotionally, which is important... I don't like to know that others are in pain and going through this like myself, but it's also comforting to know you're not alone. I'm so glad to get your opinion, it's really valued. It's so interesting to hear that you had a clear colonoscopy and still had crohn's... because I knew the physician's assistant yesterday was wrong in what she was telling me! I even tried to tell her that myself, but she wouldn't listen. It was so upsetting. I felt like nothing I said mattered!

Can you please tell me more about this scan? What type of scan was it that diagnosed your crohn's? It was probably a CT scan of the abdomen right? I'm sorry if this is a question you'd rather not answer! If so please disregard it. I appreciate all the help you're giving me already. I'm so relieved to hear that you also know something is clearly going on, it's just ridiculous what's going on here! I'm going to have to switch gastroenterologists... and hope for the best. Thanks so much!

GenmaH said:
<P>Hi there. They have also said to me its not Crohns even though they have only done a colonoscopy. I am due to have an upper endoscopy soon and my consultant is pretty sure it&nbsp;could be Celiac. I have all the same symptoms as you except I have diarrhoea instead of constipation. Have you been tested for Celiac? x</P>
It seems wrong to rule out something so quickly after only having done a colonoscopy. I really hope your upper endoscopy sheds light on your situation, it's so difficult having to wait for answers... I think it's possible you might still have crohn's though, especially given the answers I am receiving. It's such a tough disease to diagnose... it seems wrong to rule it out from one colonoscopy! Getting correctly diagnosed is so important, I really hope that happens for you. Also, yes, I've been tested for Celiac. I'm not sure if this matters as well, but I went gluten free for two weeks to also make sure and it didn't make a difference so we've ruled out the possibility. Good luck on your endoscopy! Those tests are exhausting, but I hope it will give answers!

Again, thank you all so much for your help... the support is so wonderful and is helping me extremely! I'm writing down the advice I was given and will be sure to repeat it to my gastroenterologist/new gastroenterologist. I'll be sure to keep you all updated on my situation, thank you for wanting to keep updated it's so kind! Wishing you all the best too, you're all so strong!
02-12-2016, 12:30 PM   #7
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Did they take biopsies during your colonoscopy? Sometime you can have microinflammation that only shows up with a biopsy.
02-12-2016, 12:59 PM   #8
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Hi Sunderlands. You are most welcome. Yes it was a ct scan i missed the ct bit out 😕.
Always push to get the help you need. Most of us have had to do just that too...you know your own body and when things arent as they should be. Please dont let them fob you off..
Love n hugs💕
02-12-2016, 12:59 PM   #9
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Yes, I was told my gastro took a biopsy from my colon. I honestly was not given much information about the procedure, which was another reason I switched gastroenterologists after I had the scopes done. The gastroenterology practice I go to is really just. Not too great haha.

I'd like to get a copy of the report myself, since I've never seen it. I wonder if it would be helpful at all.

EDIT:

Thank you very much, mandyk! Haha, no it's okay! I should've assumed it was a CT anyway, there aren't many other "scans" medically, huh! I'll try my best not to let them fob me off, and like you said I know my body better than anyone else... and I definitely know something just isn't right. Just gotta get it fixed asap. Love n hugs to you as well!
02-12-2016, 01:03 PM   #10
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It's good to get copies of all your records. You are your best advocate!
02-13-2016, 02:05 AM   #11
JaimeM
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I agree with eridon. I like yo get copies of my cat scans and lab work so I can get a better understanding. Plus Drs aren't always the most thorough when explaining stuff. Seeing it helps me form questions for my dr
02-15-2016, 11:55 PM   #12
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Found this post after running into another one you made in another section of the forum. I moved this post to the section for people who are also undiagnosed, in the hopes that they can help!

It's really encouraging to hear that you're being so assertive about your own care. It's unfortunately pretty true -- you really have to be your own advocate, and do most of the work, to get the attention you need. It sounds like you're definitely taking the right steps, though, as well as with switching doctors! You've mentioned that you've been lurking here already for a little bit, but I just wanted to link the doctor directory, just in case.

You mentioned "safe foods" in your post, so I also wanted to mention that when in flare, a lot of us will go on low-fibre diets. It sounds like you've already found those foods work for you on your own!

I know I can't help diagnose you, but what you're going through does sound a lot like IBD. I hope that you get answers (and treatment!) soon if that's the case.

(Also, nice SH2 icon!)
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02-16-2016, 12:23 PM   #13
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Found this post after running into another one you made in another section of the forum. I moved this post to the section for people who are also undiagnosed, in the hopes that they can help!

It's really encouraging to hear that you're being so assertive about your own care. It's unfortunately pretty true -- you really have to be your own advocate, and do most of the work, to get the attention you need. It sounds like you're definitely taking the right steps, though, as well as with switching doctors! You've mentioned that you've been lurking here already for a little bit, but I just wanted to link the doctor directory, just in case.

You mentioned "safe foods" in your post, so I also wanted to mention that when in flare, a lot of us will go on low-fibre diets. It sounds like you've already found those foods work for you on your own!

I know I can't help diagnose you, but what you're going through does sound a lot like IBD. I hope that you get answers (and treatment!) soon if that's the case.

(Also, nice SH2 icon!)
I really appreciate that, thanks so much! I hope it helps too-- anything does, really!

I'm happy to hear your support, it's really reassuring... especially since appointments have become so exhausting I just dread them nowadays (haha)! I've got a lot of help with my mom since she accompanies me in all my appointments, making sure something is being done since I'm a bit more meek than I'd like. Also, wow, that link you gave me is so neat, oh my gosh. Thank you very much! This is so helpful, I'm really grateful. That directory (when you, for example, live in the US and put in your state) is for doctors who treat Crohn's that live in your state right?

Yes! I've thankfully found a few of my own "safe foods" which are truly great... I forgot to mention that rice was one of them, and I believe that that's low in fiber. So long as it's not brown rice, I think. I've seen that foods that are high in fiber aren't great for people with IBD, so when I stray from my usual "safe foods", I stay away from those that are high in it. Thank you for the information! Every little bit's helpful.

I've been doing a bunch of research on tons of abdominal diseases and everything else... and IBD is the one I've identified with the most! Hearing that you also think so makes me more confident that I'm probably correct in my thinking of that, so thank you for giving me your honest opinion. I really appreciate your concern and all the help you've given me! Thank you so much! I do too, haha! I'm thinking of making a backup appointment to the Mayoclinic in Florida, just in case.

(Oh gosh, I'm excited to meet someone else who likes SH2, hehe-- thank you very much! Gotta love Mary.)

I actually saw my primary care doctor on Sunday the 14th, and went over everything that's been going on lately since I hadn't seen her in a little while. She's going to be ordering CT scans of my chest (not sure why?), abdomen, and pelvic area. I'm glad about the CT scan of the abdomen because I'm aware that that can show Crohn's! I'm crossing my fingers for answers when I get it done. (Also got a nice bag of IV fluids while I was there, yahoo!) I hope everyone else here has been doing well and had a nice Valentine's Day!

I'll post again if I find anything out!
02-16-2016, 12:25 PM   #14
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One of the best things for me when I'm having stomach issues is drinking warm green tea.. I drink a lot when I feel sick. I don't know if it's just a stress reliever or if it actually helps with inflammation.. But maybe it would help you too? It's kind of nice to have a few comfort foods to go to..
02-16-2016, 12:48 PM   #15
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I actually used to be an avid green tea drinker, but I haven't had some in a very long time. I think I'll make some today and see how it goes! You're right, it's definitely nice to have those few comfort foods to go to. I'm glad you've found one and it's good on your stomach!

Thank you for the suggestion!
02-16-2016, 02:51 PM   #16
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Hi Sunderlands . The ct scan for the chest area will be because crohns can be anywhere from mouth to bottom. Also to help rule out or in anything else. Best of luck with all of this n hope you get things sorted soon . Love n hugs 💕💕
02-17-2016, 12:54 PM   #17
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I forgot to mention this in my initial post, but as a child I had my gallbladder removed because it stopped functioning correctly. I think. I was a kid, so I didn't pay much attention to what they said was wrong, all I know was that I was in tremendous pain. So at the very least it rules out the possibility of something gallbladder related. I've read somewhere that people with Crohn's are more susceptible to problems with their gallbladders? Is this true..?

Hi Sunderlands . The ct scan for the chest area will be because crohns can be anywhere from mouth to bottom. Also to help rule out or in anything else. Best of luck with all of this n hope you get things sorted soon . Love n hugs 💕💕
Thank you for setting my mind at ease there, you're a lifesaver! I've had an echo/stress test before and all the EKG tests as well, so I should've assumed it wasn't because of anything really heart related... it was also silly because I've seen so many times how Crohn's can be anywhere in the GI tract! Totally forgot for a moment, haha. Thank you! Love and hugs to you as well!
02-17-2016, 01:56 PM   #18
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Hi no worries, we all forget stuff let's face it there's an awful lot to forget with what's going on in our cases.
Keep smiling and trying to get results on your diagnosis.
Love n hugs, Mandy 💕
02-19-2016, 02:32 PM   #19
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Thank you! You're right, with so much going on in our lives, it'd be impossible not to forget things. I'll do my best to keep smiling and hoping for the best!

I got the barium xray of my small bowel done today, and oh boy... what a horrible experience! The barium drink tasted so disgusting, I was almost afraid I might puke! Luckily it didn't take as long as I thought it would. About 2 and a half hours, so I was lucky in that aspect. The person who took the xrays told me that she "couldn't really see anything" and didn't seem to notice inflammation, but the doctor needs to examine it so I'm not sure when I'll hear about it. Hopefully soon... but that made me feel a bit discouraged. It sounds strange to want there to be something like that seen, but at this point I just want something to show up in order to get some type of help.
02-19-2016, 02:38 PM   #20
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I know what you mean hun. If somethings seen it could help get to the bottom of al your troubles. Barium drink oh what lovely stuff that is NOT!!!.
Hope the doc can find some answer soon if he cant off that test..
Take care n keep us updated please
Best wishes n hugs 💕💕
02-19-2016, 03:06 PM   #21
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I am so happy I don't have to do the barium studies anymore (i'm an xray tech). The worst are the barium enemas, where you stick barium up a tube in the rectum to see the colon.. I always vowed I would never have one done myself. That I'd do any other test but that.

I remember when I was waiting for a diagnosis feeling the same thing.. Just wanting them to find something so i didn't feel like I was crazy.. I still feel that way sometimes. I'm going to mayo this week, and I keep saying what if its all in my head.. Even though they've seen my crohns and that I have fistulas and what-not. Did you ever see what kind of lab work you had done? Was any of that abnormal?
02-19-2016, 09:57 PM   #22
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I know what you mean hun. If somethings seen it could help get to the bottom of al your troubles. Barium drink oh what lovely stuff that is NOT!!!.
Hope the doc can find some answer soon if he cant off that test..
Take care n keep us updated please
Best wishes n hugs 💕💕
Yes! I was telling my mom in the waiting room about a dream I recently had where I was diagnosed and that when I woke up I was pretty disappointed that it was just a dream, haha. I was hoping maybe my dream would become a reality with this test but it doesn't look like that'll happen. Gotta keep on trying, I suppose.

I keep thinking about the texture, yuck!

Thank you so much for all your support, I appreciate it so much. My primary care doc has been talking with my new GI so I'm hoping something will be found out! Crossing my fingers. I'll make sure to keep you guys updated, thank you! Best wishes and hugs to you as well!

JaimeM said:
I am so happy I don't have to do the barium studies anymore (i'm an xray tech). The worst are the barium enemas, where you stick barium up a tube in the rectum to see the colon.. I always vowed I would never have one done myself. That I'd do any other test but that.

I remember when I was waiting for a diagnosis feeling the same thing.. Just wanting them to find something so i didn't feel like I was crazy.. I still feel that way sometimes. I'm going to mayo this week, and I keep saying what if its all in my head.. Even though they've seen my crohns and that I have fistulas and what-not. Did you ever see what kind of lab work you had done? Was any of that abnormal?
I can definitely understand why-- if possible, I'd like to never get a barium xray again in my life! I probably sound like I'm exaggerating but man... that was awful. So relieved its over. A barium enema sounds so so much worse, oh my goodness. I'm with you there, I think I'll have any other test except that one.

Exactly! You've put it into words perfectly. I just feel like maybe, even though I know something is wrong, maybe there really isn't. It's terrible when I catch myself thinking like that because it's hard to stop. It's horrible you still feel that way, even after a diagnosis... but even though I'm not diagnosed yet, I feel like I can understand what you mean. I've been diagnosed with another condition, and I sometimes think to myself "what if I really don't have it". It's totally understandable, but it's still so awful. Good luck at the Mayo Clinic! It's most definitely not all in your head, don't worry. I know it's hard to not think that at times, even though things are clearly wrong and you're in pain... but please try not to worry too much. I hope it goes well!

I've checked a bit, yes! I'm deficient in vitamins D and B12, and one time (it was a while ago, so not sure how much water this holds) my iron was low... I haven't had my iron checked in a while. My primary care doctor keeps telling me to make sure I take chewable vitamins with iron in them. I've had positive ANA panels, but one time it was negative. My Bun and Bun/Creatinine ratios are always low.

I was checking a site for a hospital which can list your health conditions, given your specialist provides them, and I saw one of them listed that I was hypogammaglobulinanemic. Quite the mouthful, I know! Anyway, I'm not too sure on what that really means..? I know that I have an IgA deficiency. I also always have to get re-vaccinated every so often.

I'm sorry if this wasn't helpful! If I come across anything else, I'll post about it. Thank you for asking.
02-19-2016, 09:59 PM   #23
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Don't give up on getting a diagnosis.

02-20-2016, 02:54 AM   #24
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Hi you are most welcome, I bet you were disappointed that it was a dream. I know I would have been.. Ye got to keep on pushing for the diagnosis, it can be hard work to get one, but never give up.
Love n hugs 💕Mandy
02-29-2016, 12:14 PM   #25
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So sorry for the lack of updates! Apparently my CTs are scheduled for later today. Very last minute, but I'll be glad to get them done! I also have an MRI of my head scheduled today. I think both are going to be with contrast, I hope they don't need to get a vein twice-- my veins are notorious for being incredibly difficult to find.

I got an appointment with the Mayo Clinic in Jacksonville, Florida on March 17th. I'm very much looking forward to that! It'll be exhausting considering I live 8-9 hours away... but I have relatives that live in Florida. So that's nice. Can anyone who has been to the Mayo Clinic (and maybe been diagnosed there too?) tell me about their experience if possible? I'm a little nervous...

I still have my appointment with my new gastroenterologist on Wednesday. Quite frankly I'm not expecting much from him... but I suppose you never know. Trying to keep my head up! Anyway, I'll mention if the CT shows anything. Crossing my fingers for a "yes".
02-29-2016, 12:58 PM   #26
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Hoping the best for you.

02-29-2016, 04:02 PM   #27
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So from what I read you aren't diagnosed yet. Well it took doctors 3 years to diagnose me with Crohn's, I had symptoms for 3 years and they kept saying a bunch of rubbish like "swollen bowel" and other stuff like that. I did many stool samples, blood tests and other things but what finally diagnosed me was a colonoscopy where one tube went down my throat and the other up my rectum, they took small swabs and the tests came back positive for Crohn's. I also suffer from arthritis which has been linked to my crohn's. I suggest that you keep at your doctor until something is done as you cannot live with those symptoms as I know how hard it can become ( I experienced all of those symptoms severely for 6 years straight until last month where i finally felt well for once and honestly i am so happy. )
02-29-2016, 05:07 PM   #28
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I'm guessing they will work you up like they did for me at the mayo clinic in rochester.. I showed up to my GI appt and they took all complaints and concerns from me, whether it was GI related or not. They referred me for more tests (I also have a heart condition) so they sent me for a cardiology work up, and I am on Biologics which apparently make you at a higher risk for skin cancer, so they sent me to a dermatologist. They have an app that you can see all of your itinerary on, it's really slick. You can see where and when your next appt is, you can also see all of your test results on there as well. It's really smooth how they coordinate everything, they do all the work for you and you just go where they tell you to go at the time they tell you to go.
02-29-2016, 09:23 PM   #29
Sunderlands
 
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I got the MRI done (without contrast luckily), but I wasn't able to get the CTs done today. They saw that I still had the barium inside of me. Is that normal..? I got the barium xray done on the 19th, so its been 10 days for it to work through me... It was a bit disappointing to not be able to get that done, as well as confusing!

So from what I read you aren't diagnosed yet. Well it took doctors 3 years to diagnose me with Crohn's, I had symptoms for 3 years and they kept saying a bunch of rubbish like "swollen bowel" and other stuff like that. I did many stool samples, blood tests and other things but what finally diagnosed me was a colonoscopy where one tube went down my throat and the other up my rectum, they took small swabs and the tests came back positive for Crohn's. I also suffer from arthritis which has been linked to my crohn's. I suggest that you keep at your doctor until something is done as you cannot live with those symptoms as I know how hard it can become ( I experienced all of those symptoms severely for 6 years straight until last month where i finally felt well for once and honestly i am so happy. )
Yes, you're right. I have not been diagnosed as of yet... although I've been told by different people (some doctors, some not) that they believe it's Crohn's. It doesn't come as a surprise to me unfortunately that it took a long three years to diagnose you! That's awful! It's amazing the ridiculous things doctors can say before they find out whats going on. I'm sorry you had to go through all that, but I'm glad that you've gotten diagnosed since that's got to be such a relief on your end. I hope your treatment is helping you.

Yes, our situations sound very similar! I also suffer from arthritis and have been informed that it's linked to Crohn's. That gives me more reason to believe that that's what's going on. I'm definitely keeping at my doctor's, thank you for your concern! I appreciate it. I just hope that something will be found out sometime soon, as I'm just really becoming weaker day by day. (It's great that last month you were able to finally feel well for once! That had to be so foreign! I hope the feeling stays.)

JaimeM said:
I'm guessing they will work you up like they did for me at the mayo clinic in rochester.. I showed up to my GI appt and they took all complaints and concerns from me, whether it was GI related or not. They referred me for more tests (I also have a heart condition) so they sent me for a cardiology work up, and I am on Biologics which apparently make you at a higher risk for skin cancer, so they sent me to a dermatologist. They have an app that you can see all of your itinerary on, it's really slick. You can see where and when your next appt is, you can also see all of your test results on there as well. It's really smooth how they coordinate everything, they do all the work for you and you just go where they tell you to go at the time they tell you to go.
Wow, that all sounds so smooth and handy! It sounds very nice. Them doing all the work for you is exactly how I'd like it to be, haha. I'm exhausted from all the appointments I've been going to, so this being as easy as potentially possible (or rather, not difficult) sounds best. Thank you for the information! Anything given is helpful. I just like to know these things beforehand! I feel less nervous that way.
02-29-2016, 09:30 PM   #30
ronroush7
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I got the MRI done (without contrast luckily), but I wasn't able to get the CTs done today. They saw that I still had the barium inside of me. Is that normal..? I got the barium xray done on the 19th, so its been 10 days for it to work through me... It was a bit disappointing to not be able to get that done, as well as confusing!


Yes, you're right. I have not been diagnosed as of yet... although I've been told by different people (some doctors, some not) that they believe it's Crohn's. It doesn't come as a surprise to me unfortunately that it took a long three years to diagnose you! That's awful! It's amazing the ridiculous things doctors can say before they find out whats going on. I'm sorry you had to go through all that, but I'm glad that you've gotten diagnosed since that's got to be such a relief on your end. I hope your treatment is helping you.

Yes, our situations sound very similar! I also suffer from arthritis and have been informed that it's linked to Crohn's. That gives me more reason to believe that that's what's going on. I'm definitely keeping at my doctor's, thank you for your concern! I appreciate it. I just hope that something will be found out sometime soon, as I'm just really becoming weaker day by day. (It's great that last month you were able to finally feel well for once! That had to be so foreign! I hope the feeling stays.)


Wow, that all sounds so smooth and handy! It sounds very nice. Them doing all the work for you is exactly how I'd like it to be, haha. I'm exhausted from all the appointments I've been going to, so this being as easy as potentially possible (or rather, not difficult) sounds best. Thank you for the information! Anything given is helpful. I just like to know these things beforehand! I feel less nervous that way.
Sunderlands, it seems very unnatural to me for it to be in your system that long.

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