New turn in my road to diagnosis

[allieinwonder]

Hello everyone. I just wanted to give an update on how things are going for me, since I rarely do that outside of the undiagnosed club.

Since my hospital visit I have had symptoms come and go, but overall my flares are getting longer and more severe. About a month ago I had an ulcer appear on my tongue, and by the time I saw my GI it had eaten through my tongue to the other side. My GI examined it and got very worried, and said to himself "Damn this looks like crohns". He gave me a perscription mouthwash and then explained that he is worried about crohns, but that I will have to wait and see where it takes me, and to pursue crohns when I get back from my last semester in college in January. That was my last appointment with my GI, as he moved back to the states.

Two Sundays ago I ate a piece of watermelon in the late evening time. In the middle of the night I woke up in terrible pain and ended up on the toilet the rest of the night with explosive D. Ever since I have had terrible D 20 minutes after every meal. The "pee out your butt" kind of D. I tried a liquid diet twice, for two days apiece, and it didn't change anything. The only way I was able to eat was when I was on tramadol for extreme pain, because it causes constipation as a side effect. But I still have not seen any formed bm's in a week and two days, even with the tramadol slowing things down. It has been bloody as well.

Today, I had an appointment with my new GI. After all the work with my other GI, that slowly showed that I have IBD not IBS, completely down the drain. He asked me all kinds of questions, getting my overall history, symptoms etc. He proceeded to say that this must be IBS since all my tests have come back normal, and that I must not accept that it is just IBS. He said this after I talked about the blacking out, bloody mucus, and the trouble I have had the past week. He then says "I am going to do a pill cam to finally put this to rest".

So I have a pill cam on August 3rd. I leave here to go back to the states on the 13th, so I will not see my GI physically for the results (there is only a small chance I will be able to see a GI in the states due to my insurance being in Germany only). I will be in the states for 4 months. So this has gotten complicated.

The pill cam itself is different than I have seen in the past. They are having me do a full prep (duclolax) and they are having me wear the belt for 8 hours.

How many of you were diagnosed by pill cam? My GI said there is a small chance this will show anything, but they determined by x-ray that my pain is in the small bowel. It is really hard to continue pursuing this when I have two doctors telling me two different things. I'm not crazy, I'm not making this up, and I don't want to be this sick, but I am and I want it fixed. This whole situation is a huge mess!

I really hope it shows something and that I can get treatment....

 

[Cat-a-Tonic]

Allie, it doesn't sound that different to me from standard pill cam procedure - my understanding is that preps vary for the pill cam based on the doctor or hospital's preference, anywhere from just fasting overnight to doing a full prep. I had to do 1/2 prep. And I had to wear the belt for 8 hours also, I believe that's pretty standard. I was told that's because the battery typically lasts about 8 hours. Depending on your "transit time" it will probably see most if not all of your small intestine, possibly it'll see your colon, and it may even see the whole thing! I know a couple of radiology techs who both told me that sometimes the last images on the pill cam are of a face looking down into the toilet! Eek! So sometimes it goes all the way through and is expelled before the battery runs out.

 

[allieinwonder]

Thanks! For some reason I thought it was half that time. Silly me! That's hilarious with the bottom of the toilet thing...I would love if it took pictures through the entire small and large intestine. I have had pain in my lower abdomen all week with the severe D, so if it caught something there too that would be awesome.

 

[Cat-a-Tonic]

I know, I could just picture it being the next funny photo website - "Photos taken on a pill cam of people looking into the toilet to see if they expelled their pill cam"! Ha ha There's probably some sort of doctor-patient confidentiality thing against releasing those type of photos though. Still, it sounds hilarious! All I was told after I had my pill cam was that "it saw what it needed to see" but they wouldn't tell me if I was one of the faces looking into the toilet. I don't think so since I never did find that capsule. You don't need to return the capsule once you expel it, by the way - I just wanted to find mine to make sure it hadn't gotten stuck and possibly save it as a weird memento/conversation piece (I would have washed it thoroughly of course!). But I never found it, it must have snuck out inside a piece of poo or something (sorry, gross!).

 

[Mayflower537]

My doc required prep too. A bottle of Magnesium Citrate, I think is what it was called. So a little different than for colonoscopy but prep nonetheless. I hope that this test gives you some results, Allie.

 

[StarGirrrrl]

I am so happy you are getting a Pill Cam!!!!! If it came back clear, then you could go the auto immune testing route, or if it didn't that hopefully would mean a diagnosis.

 

[allieinwonder]

Thanks Mayflower and Star! I'm happy in the end about this, but at first I was just appalled and upset about how the GI treated me (he is only doing this to try and make sure I can't say it could be crohns since he thinks that is will come back normal). I guess either way, a pill cam is a pill cam, whether he wants it for good reasons or bad reasons.

Logically, this pill cam should show damage. We all know pill cams see the inside of a huge stretch of intestine that other tests can't see. When I had my SBFT they took a picture of my stomach as he poked where my pain is, and all that is located there for me is small bowel...the middle of it that hasn't been seen. The only other test that could have shown something for small bowel is blood test, which it can be common to have normal results for those. So I really think this might finally get me my diagnosis!

I agree Star, I'm going to go the autoimmune route if this comes back normal. I really don't think this is IBS, but you have heard me rant about this for awhile. I will give myself a break while I'm in the states though.

Out of curiosity, but Cat and Mayflower, when you had the belt on were you able to leave the hospital? I forgot to ask as they were telling me how this would all work. There is another US base nearby that has a HUGE mall type place, and we could easily knock a chunk of the time there walking around and shopping. They also have a cyber cafe. Or, since it is in the morning, we could go back to the hotel room for a chunk of the time and watch tv. Just wondering in case I should prepare to sit in the hospital the entire time!

 

[tiloah]

I think it's unf*****g believable that they would tell you you have IBS after saying your symptoms involve blood, mucus, and a f*****g ulcer on your tongue!

I also can't believe your doc would say "Damn this looks like Crohn's" and then just give you a mouthwash! Seriously I'm really worked up here! What would it take to get you to see a GI in the U.S. even if your insurance won't cover it? You NEED to see someone, especially someone who will take you seriously and not blow you off as IBS!

 

[Cat-a-Tonic]

Allie, yes, I was allowed to leave the hospital once I was fitted for the belt and had swallowed the capsule. I went home and watched TV and napped, it was nice! I just had to return the belt to the hospital once the battery had run out. You may want to call and check with your GI to make sure though, as I'm not sure if it's standard to let people leave or if it's up to the discretion of the doc/hospital.

Also, Mayflower had actually told me this before I had my pill cam - the belt can be a bit unwieldy and you may not want to go walking around in public while wearing it. It's kind of heavy and not super comfortable and frankly it looks a little weird, like you're carrying around an old-school big heavy walkman on a weird belt/sash contraption. I took May's advice and took the day off rather than going in to work while wearing the belt, and I'm glad I stayed home. I think I would have gotten a lot of confused stares from co-workers and I wouldn't have been very comfortable. So, just something to think about! Going back to the hotel would be a good idea, and the cyber cafe probably would be fine, but you might want to skip the shopping & walking around. It's not really all THAT bad but it's bad enough to be weird and a bit uncomfortable.

 

[Crohn's Mom]

It's Allie's Birthday ! It's Allie's Birthday !!
tiara::birthday2:tiara:

 

[Cat-a-Tonic]

Happy birthday Allie!!

 

[allieinwonder]

Thanks crohnsmom and Cat!

diesunduhr, it has become quite a complicated situation! My GI that day was completely torn on what to do about that ulcer...it took him ten minutes just to decide what he was going to do. He almost gave me a referral to an oral surgeon, but decided it probably wouldn't do much good. He has never shown any worry about my case until that point. I wish he had gotten worried before that day because then he could have done the pill cam instead of this new GI. It took many appointments of physically showing him symptoms that wouldn't be there if it was IBS, the weight loss (he does a physical exam of my stomach every time, and the last time he went "you are really skinny..."), the cracked corners of my mouth, the nasty ulcers, usually showing him 4 at a time, then the one on my tongue... basically it took time to prove that the test results were not matching up to the actual issue/illness. The first time I saw him, well the first couple times, he said it had to be IBS and I needed to get off the tramadol and figure out how to fix this on my own. Over time I changed his mind!

As for the US, my insurance is for military doctors only, and ER's when approved. I will talk to my GI here about it when I get the pill cam, but what i believe will happen is that I will see someone at the base near my college. They have a full hospital there, south of Atlanta, so I should be able to get the care I need. I was going to just ride this out without being seen, but it looks like that can't happen! I can only be gone from Germany for three months, and a semester is four months...so I will have to come back in the middle and be seen by my GI here so that I don't get in trouble. But if the pill cam finally gets me my diagnosis I will still have to see someone asap in the US for treatment! I didn't realize finishing my degree was going to be so much of a hassle! O.O

Cat, thanks for letting me know the belt is clunky! I will keep that in mind. I wont be able to stay in the hotel the entire time, so maybe I can just find a place to read or something to keep me busy the rest of the time. At least I will have my husband with me! He hasn't come with me in months! His new boss said whenever he needs to go for a medical appointment for my disease that he can...which is awesome!

 

[Mayflower537]

I hope you get some answers from the pill cam. I don't know how you juggle what you have to do over there and over here. Wow! Sounds complicated.

Yeah, the belt is awkward, big and stupid looking. I was worried about looking like a terrorist. Hopefully you'll get your results quickly.

 

[Crohn'ie]

I've been DX Crohn's 28 years and in all my years of talking to other people usually in hospital, including nurses the only IBD that effects the mouth IS Crohn's. It can effect you ANYWHERE in the digestive track(Mouth to Anus). I know it's very confusing for you but you must try and not get stressed about it, it does make it worse. It took my specialist years before they DX me correctly. Oh and another thing, when the pains really bad, call a Dr. out to you, it's only when they see how bad you really are, that they really kick into action and don't just it once, do it every time. Trust me, they WILL get the message. You've got to keep at it, I know we don't like to feel like were causing trouble but I really thing you need to make him understand how bad you are. After all, your the one with the pain etc. not them, and it needs sorting out!