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May, that sucks that you are having a bad day too! Sounds like every last one of us is doing bad lately! :( I hope you're still able to enjoy your vacation in spite of everything. I get recurrent UTIs and those are miserable too, so I really feel for you. If you get frequent UTIs, the one thing I've found that works well to prevent them is cranberry capsules. Cranberry juice is good if you can find 100% juice, but I find that to be too tart for me. Anyway, I hope you are feeling better soon too! What's up with all of us feeling crappy lately??
 
Hey everyone! Sorry I haven't gotten a chance to come on here and share.

So this morning was...fun lol. I got there at about 7:30 and they got me in and I had to drink 4 cups of barium...that stuff is SO disgusting. White, thick, and tastes like cement. :( I was having a hard time getting it down, and I had to slow down, else I would have just thrown it back up. Once I finished it they took xrays every 30 minutes to see if it had reached the terminal ilieum, and it took about 3 hours (in which I was walking around the hospital trying to get it to go through, looking very silly wandering around in my hospital gown lol). Once it had reached the end they used a sonnogram and took detailed pictures of the small bowel. I was able to watch and see the pictures.

The radiologist was very nice, but unfortunately he didn't see any abnormalities with my small bowel. I showed him where my pain is, and it was significant today, but nothing seemed wrong on the screen. He said he was going to look at the pictures in greater detail in his office, but for now I will get a normal report. :( When I was looking at the pictures myself on the screen I thought parts of it looked really small, esp the part that is in pain, but I guess that might be the angle it is at in my body. I should be happy, but we all know here that that isn't the case. My husband is actually more upset than me, probably because watching your wife blackout is not fun!

The barium made my day kinda yucky all around. It feels like my insides are ripping, and I have had awful D all day (which was not fun with having to drive the 3.5-4 hours back). I was having waving ripping/cramping pains while driving, and I would just start singing to the music to get through it.

So, I guess the good news is I should be good to go for the pill cam, and I really hope my GI schedules it. The bad news is it still looks like IBS...but I have several symptoms to bring up to my GI to defend that it shouldn't be IBS. The bleeding, the weight loss (the techs in radiology kept wincing when feeling for my hip bones, they jut out because I'm so thin), the yellow mucus, and the blacking out.

I seemed to miss a lot on the thread today! I'm going to try and catch up before I crash lol. I hope everyone has felt better today!
 
Allie, I'm so sorry to hear that the results are normal for now. It's good that the radiologist is going to go over the pictures again in greater detail, hopefully he finds something. But even if he doesn't, hopefully this means you get to have the pill cam (unfortunately, that probably means you'll have to do prep again - I had to do 1/2 prep for my pill cam, yuck). When do you follow up with your GI? I presume when you do, he'll schedule the pill cam? I hope so, you need answers! Blacking out is not good, and in your case it sounds like it might have been due to an obstruction, so I'm surprised they didn't see any narrowing on the SBFT. Maybe the radiologist will find something when he takes a closer look. Fingers crossed! Let us know what you find out in regards to the pill cam and if the radiologist finds anything on closer inspection!
 
I second what Cat said, it's so dissapointing isn't it, feeling so ill and having tests come back normal. Fingers crossed for the Pill Cam! May be worth seeing if you could some non-bowel specific tests too, may be a cyst or something higher up pressing on bowels?

Cat I certainly will be putting in a complaint to the Hospital about numerous issues over the past few years, including GI. That will have to be done before the legal action which I will also do. After 5 years and counting of hell taking them to court would be like a walk in the park! And confirmed CD would prove me right and all of them WRONG!
 
Thanks Cat! I see him next Monday, so only a week in between thank goodness (except for the drive lol). He seems so set on this being IBS that I'm afraid he will be like Star's GI and change is mind, which is why I'm making sure I have a solid case.

I agree, with the symptom on blacking out I really thought it would show something. bulge, narrow, whatever. The tech did say that the resolution is MUCH better in his office, so maybe that will help. If not hopefully a view from the inside will make a difference (even if I have to go through another prep lol)!
 
Hey guys, I've been away for a little while and there have been so many posts since the last time I logged on that I find it a bit intimidating to address all of them, but I have got the general message that everyone seems to be quite unwell at the moment, so a huge hug to everyone here and a wish to get well soon (but not before diagnosis! LOL.)

I spoke with my PCP today. She told me my CT came back normal and that the only abnormalities with my blood were elevated pANCA and low vitamin D. Basically, it's an indication for something autoimmune. She didn't say much about the vit D -- just that she doesn't think it could be the cause of my abd. pain (but she also didn't mention anything in regards to malabsorption.)

Anyway, she said she would call my GI and that they would compare my CT and blood results with the colonoscopy results and interpret them together. Ok. She said she would give me a call by the end of the week to let me know what the next steps would be.

So I'm babysitting, and I get a phone call. It's my GI's office. They ask if I can come in tomorrow morning at 8:15. I say, "Yes, I can, but why is it so urgent?" The lady on the phone just said that my PCP had spoken to my GI and that he needs to see me tomorrow morning at 8:15.

I am now thoroughly freaked out. I'm calming myself down by reminding myself that this doesn't necessarily mean they've got some terrible diagnosis -- it could be as simple as he happened to be in the office tomorrow or he has a cancellation and wanted to get me in to see him earlier than my scheduled May 31 (after all, he said to see him in two weeks form the colonoscopy, which is today, but there were no open slots prior to May 31 when I called two weeks ago)...right?

I cannot have IBD. I mean, I can, and I might. But as much as I want a diagnosis, I'm TERRIFIED of being diagnosed with CD or UC. I don't even know if they've got a diagnosis. All I know is that the lady sounded tense and told me I had to come in tomorrow morning.

I hope it's nothing. A few weeks ago I wanted a diagnosis badly. But my hips feel fine right now. My abdominal issues are still there but I can deal with it. I don't want to have IBD because I think that's one of the contraindications for being accepted to the Bolshoi Academy. It might be a long shot and nothing to worry about, but it's a serious disease and I refuse to let some disease stand in my way of ballet.

I don't even know that I have IBD yet and I'm already freaking out. Obviously, if I have IBD then there's nothing I can do to get rid of the diagnosis, and I WILL find my way into the Bolshoi Academy whether I have it or not. It would just add one more huge barrier. I already need to lose 50-65 lbs (I need to be less than 50 kg, preferably around 43 kg, and ideally around 38 kg -- but I'm shooting for "under 50 kg" because I would die before I got to 38 kg, I think.) I'm working on that. Breaking through that barrier. I had to have two ankle surgeries so that I could continue dancing -- broke through that barrier. I had terrible feet and legs and whatnot, but I worked hard and now i have lovely arches and hyperextension -- another barrier I've broken through. I was a late started, but now I'm the best in my entire ballet school -- yet another barrier I've surpassed. So many things stood in my way and I have either completely gotten through them or am currently in the process. To add one more thing (just one more way my body is rebelling) is really putting me on the edge...but I will get through it too. I WILL dance.

I'm sorry I'm being so complaining today. I'm just anxious for tomorrow morning. A diagnosis means treatment, which would be great. I just can't let anything keep me from reaching my dreams with ballet. No diagnosis would mean no treatment, which would suck. But at least I can then pretend like nothing is wrong.

Basically, I'm being stupid right now because I'm letting myself freak out over the unknown when really I should be not allowing myself to even start feeling anxious until I have some confirmation that I should be anxious -- ie. until I hear what the doctor has to say tomorrow, there is thoroughly no point in me freaking out. (Easier said than done, I might add.)
 
Cat-a-Tonic said:
May, that sucks that you are having a bad day too! Sounds like every last one of us is doing bad lately! :( I hope you're still able to enjoy your vacation in spite of everything. I get recurrent UTIs and those are miserable too, so I really feel for you. If you get frequent UTIs, the one thing I've found that works well to prevent them is cranberry capsules. Cranberry juice is good if you can find 100% juice, but I find that to be too tart for me. Anyway, I hope you are feeling better soon too! What's up with all of us feeling crappy lately??
Click to expand...

No telling; must have been a Monday thing. My script got called in so that's good. Yea, I've had two UTIs now in abt 8 months so I may have to add the cranberry capsules to my already lengthy list of supplements. Omg and the D from the first was that napalm out the butt type. Fun fun fun.
Allie, I am sorry that your test showed nothing so far. Blacking out is scary - I've only done it once but that was enough. Hope your pillcam will reveal something.
Feel better, everyone!
 
Ballerina, that is scary that you got called in for a sudden appointment! Good luck, I hope it's nothing too crazy. If it is IBD then yes of course it's scary, but then at least you'll have a name for what you're dealing with, and you can get treatment and hopefully get in remission and get on with your dancing. And you already have the support and knowledge of everybody on the forum to get you through it if it is IBD. Keep us posted, thinking of you and hoping that the appointment is informative but not too scary!

One more thing, are you able to bring someone with you to the appointment? I find that I feel much better when I bring my husband with me to appointments, and he's also able to ask questions and remember things that I forgot to write down. It sounds like you're understandably freaked out and might benefit from having someone supportive with you.
 
My mom is coming with me, which I guess is a good thing, but I would much rather go alone. But oh well, she's coming, and I know that's a good thing really.
 
More good luck from me for your appt today.
I agree its a good idea to take someone. I think when you go armed with lots of questions, you are soemtimes thinking about what to ask next or digesting the answer when the doc says the next thing. It has been shown that as a patient you remember the first 2-3 and last 2-3 things a doc says in a consultation and rarely much in the middle!!
 
Thanks Meg! :) I swear, I don't know what I would do without you guys...just had to say that, lol. ;)

HappyBallerina, I wouldn't freak to much about your appointment! You said it yourself, they wanted to see you sooner than May 31st because of the colonoscopy, so maybe he is just a great doctor who thinks of his patients and a spot came open. I wouldn't think too much of it, because it wont change anything! I understand how scary it can be to think you might have an IBD (I try and talk to my husband about how it could just be IBS all the time and he looks at me like I'm crazy) but there is a good light on getting a diagnosis, even if you are feeling better. If it is CD or UC, you will get worse again, and there is no reason to start over on the diagnosis then if you can get it now, you know? I have dealt with this for 6 years, and I think it might be taking me so long to get a diagnosis because I would start feeling better, or the doc would be rude, and I would give up. Anyway, I really hope you get some answers today! Fingers crossed and good thoughts your way in ATL! :)
 
My GI often calls me in at a few days notice but no diagnosis yet lol! I think it's because as well as being a GI he does surgeries too (he actually did my colonoscopy much to my surprise), so I think his schedule is sometimes not very fixed.

I had a low vitamin D result last year too, weird eh! CD can interfere with Vit D but apparently many people are low in it (especially in the UK) because of the gloomy weather we often get, and people nowadays seem to slap on Factor 50 and long sleeved clothes before venturing out haha. It's gotten such a problem new health advice has been given that a little while in the sun can be beneficial and is fine as long as you're sensible.

Good luck today and I am thinking of you!
 
Hey guys, good news!! No sign of UC or CD! :D
I am sooooo happy and relieved! He said since nothing showed up, the default is to say it's IBS. Too bad there is no treatment (he did mention a new medicine, some type of antibiotics, but I decided against any medication unless absolutely necessary), but I am so very happy this will not be affecting my ballet, or anything, really.
He has me doing two weeks of a strictly lactose free diet to see if I might have some lactose intolerance, since that might help with the bloating and gassiness.
Sad to give up my beloved cottage cheese, but I saw that Lactaid makes a cottage cheese, so I will have to give that a try...
Anyway, just wanted to update you all and I guess bid you farewell and say I really appreciate all your guys' help and support!! And of course, good luck in the future ;)
 
HB,

I am grateful that you don't have to worry. I hope that your symptoms do lessen. I wish you the best in the pursuit of your dreams!
 
I'm glad you seem to have come to an end for now! I don't forget - if your symptoms get worse, come back with a vengence, esp with blood, etc - don't be afraid to speak up. All of us here know that an IBS diagnosis can be misleading sometimes! Hopefully yours is nothing more! Good luck with your dancing! :)
 
I hope this is the right answer for you and you don't end up like I have- they told me IBS in 2007 after raised CRP in blood and normal flexi-sig.

You had a positive test right for blood in poop, the FOBT? What did he say about that? As blood is never a sign of just IBS.

If there is any doubt in your mind then please get a second opinion- I ignored my instictual doubts and look where it's landed me!
 
Ballerina, I agree with Star - I would be wary of an IBS diagnosis if you've tested positive for blood in the stool. Things including blood, weight loss, nocturnal diarrhea (having to get up in the night to go), dehydration, and "extra-intestinal" symptoms like joint pains are NOT part of IBS. I know you've mentioned joint pain too and my instinct is that it doesn't sound like IBS to me. I'm trying to remember, did you have any tests besides the colonoscopy? In other words, did the doctor even look at your small intestine, stomach, etc? It seems really presumptive that he'd say IBS without definitively ruling out IBD, and that means that more tests will be likely. Especially, as Allie said, if your symptoms stick around or change or worsen.

I'm glad that you seem satisfied with an IBS diagnosis, but personally I wouldn't trust that diagnosis without firmly ruling out other potential illnesses, especially given your symptoms. I know that's probably not what you want to hear, but I feel like it's better to be proactive and make sure that the diagnosis is correct.

And don't feel like you need to leave the forum or the club - we're happy to have you here!
 
Oh, and I forgot to mention - Ballerina, I'm lactose intolerant myself and have been for 10+ years. There are lots of great alternatives to dairy. Give them a try and see what works for you - there's products made from soy, almonds, coconut, rice, etc. I love almond milk, it's creamy and delicious and easy on my tummy. I like coconut milk yogurt, but those are kind of expensive so I switched to soy yogurts for now. I also do goat cheeses as those don't affect me the way that cow's dairy does. I don't like soy cheese or rice cheese, those have a plastic-like texture to them when melted on something like a pizza, but goat cheese acts just like regular cheese when melted. It's got a bit of a strong flavor though. Anyway, just thought I'd throw some ideas out there since I am a dairy-free expert at this point! :)
 
Red face

No, I'm not blushing. If only I was. :biggrin:

I have a really red face. I have had it for some time. I have red spots in the red area. It looks like rosacea, but I wonder if it could be a symptom of Chron's. I did steroids for "asthma" last year, and I developed what I thought was just steroid flush then. My arms and legs get red too. No bumps, just red flashes. They come and go but are worse when I am having more bowel symptoms.

My clear liquid diet is tomorrow, our server is down at work and I can't access any of my files to finish my work, and I am spending too much time worrying about Thursday. I so want a diagnosis. I don't really, but I will feel better knowing I have something that is treatable. My rlq didn't hurt this morning, I think the week of a bland diet is finally working. It's hurting now as I had strawberries for a morning snack. I knew they would be bad, but I had them and they looked so good. I finally had a bm after lunch. It hurt, I had to strain and I had some mucus on the tp. I am so worried that what happened to HB is going to happen to me. I will not settle for IBS. I know there is so much more than that happening inside me.

Sorry, I'm rambling. I am just nervous and anxious. And I so don't want to drink that suprep tomorrow!
 
Meg, I feel for you! Prep is easily the worst part of the procedure. Make sure you have stocked up on supplies - clear liquids (broth, jello, juice or clear soda, etc), things to do while you're on the toilet (a good book, laptop computer), and stuff like flushable moist wipes and a soothing cream (calmoseptine is awesome, you can buy it at Walgreens). Do what you can to make your bathroom a soothing and enjoyable place to be, because you'll be in there quite a bit while doing prep! Light some candles, put out your favorite fluffy towel, heck even buy yourself flowers and put them in there. I wish you luck and I hope that everything goes well and that you get some answers from this. Sending happy thoughts your way, I hope you get through prep relatively easily and the rest will be a breeze!

As for the skin issues, I seem to have the opposite problem when I flare. I don't go red like you described, I go completely pale! I have actually frightened myself, I catch a glimpse of myself in a mirror and for a second I wonder, "who is that awful scary woman?" and then of course I realize it's me. I look so unlike myself when I flare, I just look like a ghost. It feels like all the blood in my body has gone into my intestines and there's no blood left to go into my skin and I am completely colorless. It creeps me out!

Edited to add: Strawberries, ouch! The little seeds kill me! I can't do anything with little seeds like that. Sesame seeds are the worst - I ate some sesame seeds awhile back on a sandwich bun and they came plunking out of me looking just the same as when they had gone in!
 
I am naturally very pale and get even paler when sick! But I do get a red, flushed face too very, very easily. I always put it down to being on the contraceptive pill with all those extra hormones.
 
I feel where you are coming from meg! We all just want to know it is something treatable. I agree with cat, the prep is the worst part! I wosh you the best of luck!

I have had a rough day. Quick question for those who had the sbft before: what was it like afterwards? I am having the worst d today that i have ever had. So far i have gone 14 times today! :( at about 11 i felt dizzy and drunk-like and i thought i was going to pass out. Im hoping it gets better so i can go to sleep. On top of it this stuff is the consistency of cement and has messed my toilet up. >.<
 
Allie, I haven't had SBFT yet but I also had a ton of d after drinking barium for my CT scan. I think it's the same stuff. It was the "peeing out my butt" kind of d, very very watery. I don't remember it messing up my toilet, although my toilet is ugly and old so I don't know for sure. My toilet clogs up all the time anyway so I don't know if I would notice it being more messed up from barium! At any rate, I hope you get all that nasty barium out of your system and feel better soon!
 
I actually dont think its the same stuff. Ive had two ct scans and the barium was clear and the consistency of water, while this stuff was white and the consistency of liquid cement. I even poop white. They told me i would get constipated because it hardens like cement in your bowels, so they tell you to drink tons of liquids, and all ive only had my normal amount but i spent the entire day on the toilet. Definetly nasty stuff!
 
That's why I always advise buying half a dozen toilet brushes after a SBFT, and lots and lots of flushing!

It didn't give me D, but I have seen it affect some others on here that way. It's a foreign body to our systems I suppose so some try and kick it out. I was pooing white for days despite drinking a ton of water, which you really must do.
 
Oh, Allie, I didn't realize they weren't the same thing! Sorry! Guess I have a new disgusting beverage to look forward to whenever I do have my SBFT. ;)
 
Thanks for the advice star! Yeah, I don't even know where to begin in fixing it atm, I'm just hoping it slows down today.

And yes Cat, you do have something new to look forward to! ;)
 
Okay allie this is kind of gross but here is how I fixed mine. Armed with said half a dozen toilet brushes, gloves and trash bags, stick the brush down so it loosens all the barium already there (warning- vile smell!), and flush at least 3 times. Toss brush into trash bag and get rid since it will be wrecked. Then repeat the scrubbing and a couple flushes after each BM. Brushes should then last for a few uses. It will seem like it will never go/ stop coming out of you but I promise it will!

When I had my SBFT they had diluted the Barium with water so it was fairly easy to get down- it really seems to vary doesn't it as to what each hospital offers.
 
Ha ha thanks Star, I will try that. I just warned my husband that there would be some stuff leftover (he isnt grossed out by my body anymore, so he doesn't mind) and I've just let them dissolve and flush. At one point yesterday I needed a plunger, but other than that it hasn't been too bad. I'll be picking up a few brushes to get it all cleaned once this is all over!

Yeah, I think there was water in my barium too, since she had to shake it up well. Still thick and nasty though!
 
Hey Allie, I'll second Starr Girl's post. I also found that chucking a big bucket of hot water down the toilet helped to shift it cos the flush didn't seem to be strong enough. Drink plenty of water, love. I had the white poo-poos for a week! Seems everyone reacts differently to the barium - I didn't have D or any problems with it really ( apart from getting it down me for the test! ) Hopefully the D means it'll all be out of your system soon.
Take care
Helen x
 
Ugh, I'm so stressed about tomorrow. I couldn't sleep last night. I admit, I ate at 4 am. I figured, my prep day wouldn't start until I woke up at 6:30, so a couple hours before that shouldn't be a problem. I hope the colonoscopy police don't come after me. I was so hungry.

I am armed with chicken and veggie broth, lime jello, 2 bottle of gatorade, and 7-up. I can do this. I just need to put all the cravings out of my mind.

I am so nervous. I just don't want to hear IBS. I know I can get through this physically, but I need relief, we all do. I am sounding like a bratty little kid. I'll stop. We all want relief.
 
Glad you're getting there allie! It causes such problems (and makes a great testing material) because it isn't water soluble and therefore doesn't dissolve, so it forms a lumpen mass in the toilet haha!

Good luck with your prep quirkysoul! I hope this test gets you the answers you seek. If not then it doesn't mean IBS, lots of other tests out there.
 
Good luck with the prep, Meg! Enjoy your broth and jell-o. Take it easy, it'll be unpleasant but you'll get through it. Keep us posted on how you're doing. It sounds like you've started the liquid diet now - when do you start drinking the prep? And then you go in for the scope tomorrow morning?

Star, I am going to keep that in mind for whenever I have my SBFT. I will go to the dollar store and stock up on plenty of toilet brushes! And if that doesn't do the trick I'll also try Grumble's trick with the hot water.

As for me, I'm doing somewhat better today. The past few days, especially Sunday & Monday, I felt like my gastritis was coming back. The pains were in my stomach, not in my LRQ as usual. I remembered that the GP had said that gastritis can be treated with acid reflux medication, so I took more than usual and was popping Tums after every meal, and that seemed to do the trick. I feel quite a bit better now, less d and no stomach pain today. I'm going to continue popping the Tums for a few more days just to make sure the gastritis has been taken care of. I hope the rest of you guys are doing better today too!
 
Hope the colonoscopy goes ok for you meg and gives you some answers. It will be worth the prep if it does.
Glad you are feeling better cat, and I hope you stop pooing white soon allie. When is your pillcam? At least you might not have prep for that...if you are one of the lucky ones like me. I think cat had prep though.
 
Little Miss H, you got it right, I had to do prep. I was instructed to drink 1/2 the usual amount of prep, but it still affected me as if I had done the full amount. I was "peeing out my butt" for hours and I got too dehydrated and required IV fluids. Not fun! In the future, I'm going to start at maybe 1/4 prep and drink a little more if I'm not going clear. But apparently for my size/weight, 1/2 amount is still too much for me.

From what I've read on here, pill cam prep seems to be up to the doctor or hospital, with some (lucky) people just having to fast overnight beforehand, and others (not so lucky) having to do 1/2 prep or even full prep. Allie, I hope you get to be one of the lucky ones! And Little Miss H, I'm jealous that you didn't have to do prep. :)
 
Thanks everybody. I'm doing fine, just huuuuuuuuuungry! I may be bendign the rules, as I got pulpless OJ. It says clear fruit juices without pulp. Well, no fruit juice is really clear. : )

The docs office called and asked if I could move my time up to 9:30. So, I have to be there at 8:30, which means the second round of icky prep is to be consumed at 4:30 am. Yay, no sleep 2 nights in a row. But, more time to rest when I get home. Yay!

Thanks for all the well wishes. I'm feeling ok. Again, just starving.

Good luck Allie! That sounds positively unnerving. I am so sorry for you that you are having such a reaction to the prep. Here's to you feeling better soon.

Cat, I am glad you are feeling better. Here's to you continuing to improve.

I raise my mug of chicken broth to you both!
 
Meg, I had sleepless nights both times I did prep too (once for c-scope and once for pill cam). But trust me, if your experience is anything like mine, you'll wake up from the scope feeling great and then you get to go home and sleep and relax the rest of the day. So you've got something nice to look forward to at least! :) The first meal after a scope is nice too, you're so hungry and food just tastes amazing no matter what you eat.

What else can I tell you about the scope? Well, be prepared to fart! They pump a lot of air into your colon during the scope and when you wake up you just fart and fart and fart some more! My experience was that they put me in a recovery area with other people and we all had our own little "room" with a curtain for a door, so we couldn't see each other but we could all hear each other's farts through the curtains! It was ridiculous and funny, like something out of a movie.

The other thing I remember from my scope is, well, not remembering! They'll give you "twilight sedation" which supposedly means that you're sedated but not completely knocked out, so that if they need you to move or turn during the procedure that you can still follow simple commands. But if you're like me, you won't remember a thing of it. I remember getting my IV, and then nothing until I was in the recovery area. The first thing I remember saying was that I asked my husband how much time had passed. He just smiled and informed me that it was the 4th time I had asked him that same question! I don't remember the first 3 times. So you may say things and not remember them. Apparently after my endoscopy I was even worse - hubby tells me that I had an entire conversation with my GI afterwards, but I don't remember that at all. I don't even remember going home, actually - at some point I realized I was back on my couch and I felt very loopy. I think they gave me too much sedation that time. But too much is better than not enough, that's not something you want to be awake or alert for.

Anyway, I'm rambling. I hope the prep continues going well and that you're able to put food out of your mind for now. Suck on hard candies (not red of course) or ice cubes if the cravings get too bad, that's kind of like eating and I believe candy was allowed when I did my prep. Good luck! Keep us posted on how you're doing and how the scope goes!
 
My first colonoscopy I had with sedation but it made me sick so went for no sedation with second , also because I wanted to remember what gi saw and said- big mistake- would not go for no sedation again. I was ok with the prep though, but it caused me to have a big bleed the following day which was scary.
 
Thanks Meg! Good luck with your prep - I am almost jealous that you have so many options with your prep lol. ;) German prep I was only allowed coffee in the morning, strained meat broth for lunch, and water or tea the rest of the day. Once I did the prep meds, which was just a bottle of mineral oil, I laid in bed in agony. Good for you to explore with stuff to help you through it! I will never stray away from american medicine for a colonoscopy again lol. As my director at the theater puts it "colonoscopies are great! What great meds they give you!" so remember, tomorrow will be a breeze compared to today. :)

I am finally slowing down on the D and it is no longer white. Woot! Only about 48 hours from test to being flushed out! lol I used a combination of Star's and Grumble's advice - I got REALLY hot water from my sink and then dumped it into the toilet, flushing, then after about 15 minutes of that I used my only toilet brush to get it all out. You are right star, that stuff doesn't dissolve in water. SO nasty! I then continued to put HOT water in (rinsing the brush at the same time), and now the barium is a thing of the past ha ha. :)

I actually was able to realize it was barium mixed with blood, so I have something else to bring up to my GI..this was IN the barium, so I know its not from my hemm. Plus my external hemmie is so small, like a skin tag, I really don't think most of the blood I am seeing is from it. But my GI wants to blame all the blood on it. ~.~

Thanks for all the advice guys!
 
I get to have frozen lemonade when I get home. That is now holding me over. I am SOOOOOOOOOOOOOOOOOOOOOOOOO hungry!

I have decided to call tomorrow the "Blast off to Infinity and Beyond!" Tee hee.

Thanks for all the fun times stories ladies. I am super excited about this now.

Yay Allie!!!!!!!!!! I'm glad you are still here. I'd hate for you to leave us. I am sorry to hear you have blood though.
 
Ha ha Meg, have fun playing Buzz Lightyear tomorrow. :D Sorry if we freaked you out with our stories. Really, after the prep everything else will be easy peasy.

Allie, sorry to hear you're having blood now too. But hopefully that's enough to convince your GI that it's more than just IBS. Best of luck on Monday! Keep us posted on how your appointment goes.
 
LittleMiss: Sorry I didn't see your question to me before! My pill cam isn't scheduled yet, the SBFT was to make sure it shouldn't get stuck. He said that even if my SBFT comes back normal he would still most likely schedule the pill cam, so I should be scheduling that test on Monday. Its the last test I'm trying. If it shows nothing like every other test I'm going to give up for awhile, even though I know I will still be suffering..but this is getting too hard, and I know you all understand that too! But I have seen so many here get a diagnosis from the pill cam, that I have a glimmer of hope that it might work.

I've also been thinking about getting another colonoscopy, or at least asking. The blood is bright most of the time (it was red in the barium), so it would be coming from the colon, right? Maybe that colonoscopy would show something. I am also starting to get pain in my lower left side along with the upper left, so maybe it is starting to show there too. Of course I bet it would come back normal too. ~.~

Thanks Cat! I have already put 3000 miles on my new car I got a month ago since I have gone to the Army hospital twice this month (its 450 miles round trip to go see my GI), and going again Monday makes me kinda sad. I feel like I am using it to much! Hubby is telling me to use his car since it is our "german throw away" (Its a used BMW) but I love driving my convertible too much! lol

I've realized that I already call myself a crohnie...is that bad? lol everyone seems to agree that its what I have EXCEPT the doctors. ~.~
 
Yes allie, bright red blood is from the colon and mostly the later parts of the colon. The small bowel and first part of the colon show darker blood as the blood 'alters' if it spends time in the gut. You can have very heavy bleeds from the small intestine which are maroon in colour as the blood passes more quickly due to the very large volumes but this is very uncommon.
 
Hi everyone,

I'm new here and thought I would get some advice from everyone that seems to have been through the ringer a few times. :)

I have had chronic diarrhea for the past 5-7 years. It comes and goes, but usually happens after a heavy meal (especially if I drink caffeine or alcohol, and/or eat heavy, oily food. Ice cream is a trigger as well). Sometimes it's a couple times a month. I did a colonoscopy, which revealed inflammation in the small intestines but everything came back negative for IBD.

I had an internist tell me it was a functional issue that should be solved with metamucil... that made it even worse.

I'm so frustrated... I never go out to dinner with friends or on trips where I know drinking and bad food is involved (which is all the time!!) because I am too scared I will have an episode. The worst part is that I have become so anxious because of it, that I am pretty sure I made it 10 times worse. Now, when I get on the train or in a long car ride, I freak myself out to the point I have to go.

It's not one of those things where I can say, oh, better find a bathroom... I literally have 5 seconds to find one or it's disaster for me.

I'm 28 and this is ruining my life. Every hour I am thinking about it and what I am drinking, eating, etc.

I know it's possible that something exists in my system that the colonoscopy can't detect, but what a HORRIBLE process to go through all for nothing.

Next steps are to take blood and see if that reveals anything...

Ughhh, what a miserable thing to deal with. Anyway, glad there are others to talk to that are dealing with the same thing. It's nice to know I am not alone. I agree with everyone... I don't care what it is, I just want to know how to treat it.
 
Cbf, I'm sorry life has brought you here. I wish no one had to go through this. Sounds like if there is inflammation, that indicates crohns. But keep in mind, I'm undiagnosed. Have you asked your doc for prescription diarrhea meds? Maybe try prednisone to try and get the inflammation down?

Good luck!
 
Hi CBF and welcome to the forum and the club! Sorry you have to join our club, and I hope you get some answers and relief soon. Where are you at in your diagnostic journey - do you have any upcoming tests or appointments? Have you had other diagnostic tests besides the colonoscopy?

I've heard that fiber/metamucil can help people who have IBS, but if you've got Crohns or colitis then the opposite is true and fiber = pain! I try to eat mostly low-residue foods, things like white rice, potatoes without skin, baked chicken or fish, pasta, etc. Generally speaking, foods that are bland and white are the easiest to digest and cause the least amount of pain and diarrhea. It sounds like you already know what most of your triggers are so at least you know what to avoid.

It's true that stress and anxiety can make our symptoms worse. Unfortunately, telling someone "try to avoid stress" is much easier said than done! I am not a fan of travelling either. I always carry a little "emergency kit" with me just in case. It contains things like moist wipes, pads, a change of pants & underwear, TP, etc. I keep it in the trunk of my car when I go on drives. I also got a medic alert card (you don't need to be diagnosed to get one) that basically says I have an illness where I can't "hold it" and need access to a bathroom - it's for if you are in a shop or restaurant or whatever and need to go, even if they have employee-only bathrooms and no public restrooms, they have to let you use their bathroom. Here's a link to where to get the card:
http://www.myibd.org/RestroomMedAlert/index.php

And I know just what you mean about thinking about this illness every hour of every day. I am the same way! It can be all-consuming. I wish I knew what to tell you. All I can say is that you're not alone, we're all in the same boat here and we understand what you're going through. Welcome again. :)
 
Meg, what prep are you drinking? Is it Go Lightly? I haven't had that myself, I've always done the Gatorade & Miralax prep, but my doctors always try to push Go Lightly on me and I always refuse because I've heard it's awful awful stuff!

Speaking of that, I was at the grocery store the other day, and in the candy aisle I saw candy that was called Go Lightly Candy! My stomach turned, how awful! I don't think it's related to the prep, but there's no way I'd ever touch candy that was called Go Lightly! Yuck!
 
Ha ha, that's funny cat. I am right there with you on those candies.

I have a migraine, feel like I'm going to puke, tired but can't sleep. Everything is clear on thr way out. I called a pharmacist to see if I need the second dose. Thinking about drinking it makes me nauseous. She said the goal is clear so she thinks I'm ok. What do you think? I don't want to risk a skewed result.

I feel like a big baby.
 
You sound good to go Meg! Have fun today with your procedure! Yay for sleeping time and then food! :)

cbf253, if they found inflammation in your small intestine that is NOT a functional disorder (or IBS), because the definition of a functional disorder is that it causes no physical symptoms. Metamucil is actually bad for IBD, because if you don't drink enough liquids with it it can cause a blockage if you have narrowing or inflammation. Not fun!

If your GI that found the inflammation wont budge on the IBS stuff (which in my opinion is ridiculous), find another GI and get a second opinion. If your issues are in the small intestine, a pill cam or SBFT would show the entire small bowel to see what all is wrong (but no biopsies).

I hope you are able to find answers soon! All of us here understand your frustrations and are right here with you. :) I too have issues with my small intestine (thats what we think anyway...it fits the puzzle kind of thing) but my tests keep coming back normal so I am told its a functional disorder as well. I have also been sick for 6 years, so I understand how frustrating it can be to be sick for so long without any help!
 
I really tried the second dose. I really did. I called the office and the doc on call concurred with the pharmacist. I stopped the d around 10:30. I tell ya, eating light the last week has helped. I hope my silly gag reflex hasn't ruined me. But I was clear.
 
Meg, I was always told that if I'm going clear then I can stop drinking prep. So don't worry about the second dose of it. By now you're probably having the scope anyway so no more prep for you either way! Let us know how it went, wishing you good luck and answers!

CBF, I agree 100% with what Allie said - if your doctor has found inflammation but is still saying IBS or a functional issue, then it's time to start looking for a new doctor. IBS does NOT cause inflammation. And if they found inflammation in your small intestine, they should really be doing more tests to check the rest of the small intestine. They can only see a little bit of the end of it during a colonoscopy. It sounds like you need more tests and possibly a new doctor. Good luck and keep us posted on how you're doing.
 
I have been feeling unwell for about a year, i have had blood tests that show i have low b12 and folic acid levels, i am negative for celiac however.
I have had a colonoscopy which showed inflammation and patches. The consultant said it was more than ibs and took a biopsy and ordered me a barium MRI (scheduled for june 16th). The results for biopsy have come back as normal. Does this happen after they have found stuff on the colonoscopy? and what is normally searched for? Before i had the biopsy and colonoscopy my consultant prescribed Meberverine (normally given to ibs sufferers)
In the last few days i have had terrible cramps and upset belly, i have also had bloating and feeling really sick (this is new for me!!)
Can anyone offer any advice as to what my diagnosis may be?? and does it sound like crohns??
 
Hi Kate, welcome to the club and the forum. Your symptoms certainly sound like they could be Crohn's or colitis. Both Crohn's and microscopic colitis can have "skip patterns", which is like what you described with patchy areas of inflammation. Have you had any other tests besides the colonoscopy? The MRI should be able to see details of your intestines so hopefully that gives you some answers. I've been dealing with a lot of bloating too, I feel for you, it's not fun! I actually lost 5 lbs but my pants don't fit as well just because of all the bloating. :(

I hope you get some answers on the 16th. Keep us posted!
 
Welcome Kate. It does sound like it is IBD of some sort. I am new to all this myself so I'll let the longer suffering friends answer. good luck and I hope you find your answers and relief.

I'm home. mom took me to cracker barrel and I couldn't even eat half. I have dinner tonight. We also went to the store. o got soups, broth, rice, tuna and watermelon. I want to keep up the bland diet for a while. Colon is clear. He did biopsies to rule out microscopic colitis. were going to do more tests for crohns. I really like my doc. He's strongly leaning towards crohns. He never said IBS. He told me I don't want crohns (um, yeah) but that he suspects it because "it fits."

So, no diagnosis but a doc strongly on my side.

Thank you all for your support. I am grateful for finding you all.
 
Glad it's all over and done with meg. Shame though you are no nearer to diagnosis. What's your docs next plan of attack?
Enjoy your dinner! (what's cracker barrel... Sounds like a tin for biscuits...I don't think I would want to eat any of that ..let alone half. ;-)). )
 
Kate, what is your docs explanation for the inflammation ? ( you don't get this with ibs so he needs to explain what's causing it)
 
Meg, glad to hear you made it through the scope. And very good to hear that your doc sounds good and believes you have some form of IBD. My GI feels that I could have Crohn's or microscopic colitis as well (I personally feel that Crohn's is more likely for me, since Entocort worked on me and that works in the terminal ileum - my understanding is that Entocort wouldn't really work on colitis). Anyway, good luck on the biopsies and I hope you don't have to do prep again anytime soon!

Little Miss H, Cracker Barrel is a chain restaurant here in the US. I've never eaten there but my dad tried to get me to go there while we were on vacation a few months ago. I'm not a fan of eating at places that I don't know to be "safe" for me so I didn't go because I'd never been there and didn't know what their menu consists of. Meg, what do you get when you go there? Do they have anything bland/low-res on the menu?
 
Umm, no crohnie should go to cracker barrel. I'm gonna take the hit. Ummmm, I'm not saying what I ordered.

I don't even think I have an appointment scheduled with the doc. Biopsies take a couple weeks. Continue vitamin d and lomitil for the d.

I am so sleepy. Night night.
 
Holy cow, Meg! Your post piqued my curiosity so I googled the Cracker Barrel's menu. Is everything there fried and covered in gravy with a side of corn muffins? I do have to say you're right, no crohnie (or anybody else for that matter) should ever eat there! Owch and yuck! My tummy hurts just thinking about the horrors I saw on that menu! Eek!

On the plus side, I am SO glad I trusted my judgment and didn't let my dad take me there. What a dummy my dad can be sometimes, he KNOWS what I can & cannot eat, he just doesn't think things through (and he loves fried things covered in gravy).
 
My consultant didnt really explain the inflamation. He said that he would do a colonoscopy because my blood test showed a marker for inflammation, and the fact that i was getting up in the middle of the night to use the toilet.

After the colonoscopy i was told that my ilieum was inflammed and they could not see further down the small bowel, thats why they wanted to do a MRI.

With crohnes do you get periods where there is very little pain even though there is no treatment being given. Just when i have felt quite good for a week or so Then the pain comes back with a vengence.

Thank you so much for the advice already. xx:
 
Kate, you've just described another symptom that is definitely not part of IBS - if you have to get up in the night to poo, that's a definite sign that you've got something more than IBS!

This link might be helpful to show your doctor if he still thinks it's IBS/functional disorder, look at the "red flag symptoms" section near the bottom:
http://www.helpforibs.com/footer/rome_guidelines.asp

As for your other questions, we are all different. Some Crohnies have flares that last for a few days/weeks and others have flares that can last months or even years. Personally, my flares usually last about a week or two. Between flares I have periods where I know I'm not flaring (when I flare, I get things like night sweats and all my joints ache - I don't get those symptoms outside of a flare). Outside of a flare, I can still get symptoms like abdominal pain, diarrhea (I have that pretty much every day regardless of whether I'm flaring or not), nausea, lack of appetite, fatigue, etc. My symptoms in a flare are much worse, outside of a flare my symptoms can vary between mild to moderate. Sometimes my body throws me for a loop and I'll get constipated for awhile or I won't be able to eat foods that are normally "safe" for me. It's hard to pick out solid patterns, part of this illness is that it's somewhat fluid and can change over time.

Anyway, I hope that helps somewhat. Keep us posted on how you're doing and how the MRI goes and of course feel free to ask questions or share any insights or just vent or whatever.
 
Sorry you had tO join us Katie, but welcome! I agree with everyone else, that sounds like an ibd. I hope your next test gets you closer to diagnosis and treatment!

Meg, im so sorry the colonoscopy dodnt show anything! Atleast its over with and you sound like you have a good gi on your side!

Im from the south and miss cracker barrel! They have stuff that isnt fried, and their veggies are thoroughly cooked and they have a veggie plate meal which should be safe ( of course, depending on the crohnie). But yeah, its traditional southern food at its best. ;)
 
Well the bowel bacteria breath test finally came through for the 8th June. Obviously hoping that CT scan will reveal something and I won't need it after all. It's a 8:45am start and very few foods I can eat the day before- no bread which is my safe food, the only thing I can have on the small list is rice! Which I think is okay but it does give me pains sometimes, haven't had it in a while :(

Really not coping well, doesn't help it's time of the month. I have heard a big fat nothing about my scan and my nerves are in shreds. GI knows now through email i've had the scan and hoping to get the results Wednesday but I just don't know. I keep telling myself it'll come back normal :( Even though i've had positive tests and not been called in (had to wait months actually) I just can't allow myself to get my hopes up. I told Rheumy before GI appointment came I did not want to be kept waiting again and to call me in sooner than July 20th or send a report to my GP and let me know- nothing!!!!!!!!!!

These waits get harder and harder with every test. No response (which isn't unusual) to my email about passing blood either.

If the IBS drugs were working I have had about as much as I can take and I would throw up my hands in defeat and say it's IBS. But they're not so i have no choice but to keep fighting :(

Getting a second opinion in London will mean a long wait, travel which will not do me any good and a deal of money. But I am steeling myself for this course of action. And if GI won't change his attitude i'll have to see someone else at local in the interim while second opinion goes through. Even though they all have it neatly sewn up as IBS there, not wanting to admit their mistake. I feel with the blood now I can't stay with current GI if he ignores that too.

And I am still upset 2 months later my Pill Cam was cancelled, I had high hopes for that :mad2:

I really am at the edge of the line here.
 
I'm so sorry you are so frustrated Star. :( I understand how hard it can be to go through this for years and years and seem to never get anywhere. You and I actually got sick around the same time...hopefully both of us will have a CD dx soon!! One thing I have to tell myself while waiting for test results or doctors appointments is that worrying about it isn't going to do any good. I put it out of my mind and try and live life the best way I can, because the test results wont change from me freaking out!

I know the 2nd opinion might be a hassle, but if the possible benefits (getting a crohns dx, figuring out whats wrong, etc) outway the stress and hassle I think you should do it. Like I said a few posts back, I drive 3.5 hours one way for my GI, and I have done it three times in the past month, putting lots of miles on my brand new car. But if he looks at me on Monday and says "we found ____ in your small intestine, you have crohns, here is what we are going to do" it will all be worth it! You sound like you are going nowhere with this GI right now. Plus, the GI in London might be more willing to schedule the pill cam!

As for me...I'm currently staring at a 2 liter container of gatoraide lol. Two days ago, after I finished passing all the lovely barium, I ended up in a lot of pain and was "peeing out my bum" every 20 minutes. I tried taking dicyclomine, since the pain was sharp (like maybe bowel spasms?) and dicylomine is used for IBS patients for it. It didn't help at all, so I resorted to my tramadol (which I am almost out of and will have to beg my GI on Monday for more pain killers...he will probably say no! :(). Well, I haven't had a bm since. That usually doesn't happen, so I think I got dehydrated from all the D those two days (about 15 times each day), and then the tramadol on top of it just dried everything up. So, 2 liters of gatoraid and stool softeners here I come! This week has been about the extremes...no happy medium!

There is some good news in site though! Next weekend my husband, dog and I are going to Italy for Memorial Day weekend. :) We are taking an overnight train to Pisa, and staying at a bed and breakfast near the beach. This is my first trip out of Germany since we got here in October. Stuart (my husband) had picked this duty station for the traveling, and I haven't been feeling up for it because I've been so sick. We are almost at a dead end with trying to get treatment, and I am only here for a couple more months since I am going back to the US for school, so we are finally going somewhere! I am excited to be able to get away from all this for a couple days. :)

Ha ha while typing this post I got halfway through my giant gatoraide. ;) I hope you are recovering today Meg! I hope everyone else is doing well today!
 
Ah, crap. I feel like I'm headed into a flare-up. I felt okay when I woke up this morning, but as the morning progressed I steadily got more and more LRQ pain (and what feels like kidney pain, although my crohnie friend said sometimes her LRQ pain radiates around to the back/kidney area, so I'm guessing that's what this is) and then after the pain hit I also got hit with massive nausea. Right now I'm waiting for my Zofran to kick in and hopefully get rid of this nausea. To top it all off, my face just went pale, which is almost always a sign that I'm heading into flare land. Why do these things always happen on a Friday? It's going to be fun trying to get ahold of my GI, I don't think he even works on Fridays. My hubby just left town for the weekend too so I'm alone with my flare. This sucks. :( I feel like crying which is another flare symptom for me, my emotions always seem to get out of control when my guts are also out of control. Ugh.

I'm at work for now, but I suspect I might be heading home sick before my workday is over. I hate the feeling of heading into a flare and not being able to do anything about it. If I had a diagnosis, I'd be able to call my GI and request some pred or whatever and not have a problem getting treatment. As it is he'll probably put me back on Entocort, which takes at least a week to kick in. When I was on pred in the past, that always kicked in on the first day. But my GI is hesitant to put me back on pred. Maybe if I beg and plead. Ugh, this is just such an awful feeling! I don't even feel that bad yet, but I know the worst is yet to come. This just sucks. I've only been off of Entocort for about a month and I'm already heading back into a flare? My GI was pretty confident that I'd have a months-long or years-long remission from Entocort. I was skeptical of that and now I'm proving myself right. For once I wish I was wrong! Uggggh.

Sorry. Thanks for letting me vent. I have to get my emotions under control now so that I can call my GI. If he's not in I'll call my GP. And if he's not in then I will definitely cry and go home sick. :(
 
Oh cat, I'm so sorry you are flaring! You're in my thoughts. I hope your gi is available and accommodating. Hugs!
 
Thanks Meg. I just called my GI's office and left a message with the receptionist. She said she'd pass it on "to the nurse" so I'm not sure if my GI is even in today or not. In the meantime, I tried drinking some Ensure. Got halfway through the bottle and my nausea got wayyy worse so it looks like I won't be eating anything for awhile. I'm drinking tea now and it's hard to get even that down.

I think I've become something of a wimp when it comes to flares. I was on Entocort for 7 months and I've been off of it for one month. I had bad days during that time, but I didn't have an actual flare during that 8 months, so this is difficult because it's been awhile since I last flared! I don't really know what to do. For now I'm toughing it out at work at least until I can't take it anymore. I've got the weekend to rest. This sucks, I had all these things I wanted to do this weekend - I was going to go garage sale shopping, do some gardening, wash my car, take the dog to the park... now it looks like I'll be watching movies and napping and in the bathroom, and not much else. :( I wish my guts didn't have such a grip on my life! I want to live on my life on my terms, not my guts' terms.

As I was typing this message, I got a call back from my GI's nurse. Apparently my GI is in today after all. She got some more information from me regarding my symptoms and what meds I'm on, and she said she'll pass it along to my GI and find out what he wants to do and then call me back. She asked what pharmacy I normally use so hopefully that means my GI will prescribe something.
 
so confused right now

After having my colonoscopy i was told that there was more than ibs going on!!

After a week of the pain getting worse i rang my consultant and spoke to his secretary. I asked what else i could take for the pain as the colonfac was no longer helping. This is what i was told. Your due to have MRI in four weeks, the biopsy was normal, although there is inflammation on colonoscopy. You could try asking pharmacist for Buscopan ibs and see gp in mean time.

In your opinion do you think this means i have IBS or am i being given this because it helps with ibd pain??
 
Kate, I'm not familiar with Buscopan. If you try it, the worst it can do is not work, right? Although if it's an IBS med, it probably won't do a thing for you - most of us here seem to have tried IBS meds at one point or another, and I don't remember any of us having any luck with them.

If I were you, I'd go to the GP while waiting for the MRI. My GP prescribed me things to help with my symptoms, like Zofran for nausea and Lomotil for diarrhea, so go to your GP and see what they can do for you. It might help you get through the next 4 weeks a little easier. 4 weeks is a long time to wait when you're in pain and suffering!
 
Cat, update please. How are you feeling?

Good Luck Kate. It sounds like the doc doesn't know what to do for you as of yet. I think doc's are afraid to put people on Crohn's medicines unless they're sure.
 
Katie, they probably suggested the ibs stuff because GIs will not perscribe ibd meds very easily: since the biopsies came back negative he probably wants more proof before he says its ibd. Ibs has most of the same symptoms as ibd, so they probably want to make you more comfortable in the mean time. I agree with Cat, it would hurt to try them! I have tried several and they havent helped, but they were for specific symptoms i dont have (like intestinal spasms).
 
I was give dicyclomine, generic for bentyl which is an IBS med. doesn't seem to help my lower right quadrant pain.
 
Meg, thanks for thinking of me. I haven't eaten at all today so I'm feeling a little bit better just because of that. It's been over 2 hours since I spoke to the nurse and still no call back from my GI though - I'm getting angry about that! I'm on my 2nd mug of tea and so far liquids (except for Ensure) are going down pretty well, so I'm just going to continue doing liquids today. I'm still at work but it's really slow today so I'm taking as easy as I can. My boss and co-workers are really understanding about my illness and there's even a "sick room" in an empty office at work with a cot, and I brought in my own pillow and blanket, so if I get to the point where I need to lie down then I'm all set. For now the nausea is mostly gone and I'm just dealing with some weakness and the abdominal pain. Fortunately I've got plenty of Zofran and Lomotil which are keeping the nausea and d at bay now. So I'm doing okay but I sure wish my stupid GI would call me back already! Sometimes I wish doctors & nurses would know just how awful a flare can be, so that they wouldn't dilly-dally when they know a patient is flaring.
 
Meg, I was also given Dicyclomine and it also did nothing for me. I keep it on hand anyway as I discovered it works okay for my menstrual cramps, but not for anything related to my gut illness.
 
That's great that work is so accommodating. I hope you can get some sustenance in you soon that won't trigger any worse symptoms. Feel better.
 
Ugh. I am SO pissed off now. I got sick of waiting so I called my GI's office again to see what was taking so long for them to respond - it turns out the nurse who promised to call me back already went home for the day! So I spoke to another nurse there who spoke to my GI, and I was told my GI is upping my dose of Amitriptyline from 25 mg to 40 mg. And that's it for now. He wants to see if that'll make any difference (I'd bet my life savings that it doesn't!) before trying anything else. He apparently wants to take it slow and try one thing at a time - well, that's all fine and good to say when you're not the one flaring! I am so, so pissed. There goes my weekend. If he had just given me a quick taper of pred, I'd be feeling better pretty much instantly. So, here I am crying at work (fortunately there's hardly anybody else here today so nobody sees me weeping in my cubicle) and so angry. Amitriptyline is not going to make a damn difference.

Would it be horrible of me to call my GP and explain the situation and ask for pred? Is that equivalent to when you're a kid and one parent says "no" so you go and ask the other parent?
 
Oh Cat, I'm so sorry. Anger certainly doesn't help your gut, but you need to feel the feelings. I would call my GP if I were in your shoes. If you know it'll help, you should be able to get what will help.

Keep us posted!
 
I thought about it awhile, and since I'm feeling slightly better I decided to go along with my GI's plan for now. I picked up my new prescription of 40 mg Amitriptyline and will see how it goes over the weekend. If I'm still flaring by Monday, I'll be calling my GI first thing in the morning.

In the meantime, I went outside during my lunch hour and that seemed to help a lot. I get chills when I flare and sitting outside in the sun made me feel better. I drank some gatorade and I even managed to eat a little food (my tuna/pasta/mayo concoction). I got some more Ensure too and bought myself some Pringles, so now I have plenty of flare food & drinks and I don't have to leave the house the entire weekend if I don't want to. That's a nice feeling. Of course, I'm stubborn and I told my friend we'd go garage sale shopping tomorrow, so I'm still going to try to do that. My friend's a crohnie too, so if I'm too ill go shopping, she'll understand. :)
 
Oh good. Sounds like a workable plan and your body just needed a bit of a rest. Hopefully you will be able to garage sale.

I get chills too. Really bad chills when I am sick. I bet that is a symptom of Crohn's. Wow, you can eat Pringles in a flare? I'm jealous!!!!!!! I had your tuna pasta combo today. That was my breakfast. So good. I told my mom about it yesterday and she is going to try it too. She says it sounds yummy. : )

If I couldn't garage sale, I'd be so mad. I went last Saturday after the ER trip. I couldn't sleep and I had some bathroom issues, but it was so worth it. I got 2 purses, a cool pair of earrings, some tupperware for lunches and a popsicle maker for the kids I babysit. Nice hull!
 
Meg, I *love* garage sales (and thrift stores and clearance racks, and pretty much anywhere that I can get a good bargain!). And yes, I can eat potato chips pretty much anytime. With Pringles, I have to chew them until they're mush or they hurt as they're passing through me, but as long as I chew them well enough then I'm fine. I have low sodium and I seem to lose sodium quickly when I'm having a lot of d, so I eat potato chips during flares just to keep my sodium levels up.

As for the chills, yes I believe that is a symptom of Crohn's. From what I've read on the forum, some get just chills, some get a fever and chills. I never seem to get a fever but I frequently get chills when I flare, and sometimes it's nearly impossible to feel warm again. I remember one particularly bad flare when I was so chilled and I sat in a hot bath but I was still shivering! And it's so weird because when I take my temperature it's always normal! I don't know how I can be that chilled without having a fever, must be a flare thing.
 
I'm so sorry your GI only upped your amityptiline Cat! If my GI ever tried to do that to me I'd probably refuse...I didn't take it the past couple days (accidently or because you can't take it with tramadol) and I was getting up at 8am, which was weird because I usually have really bad fatigue. Well sure enough I took it last night and woke up at noon! I hate this stuff so much. I hope it helps over the weekend for you, but your GI might just say it wont help that fast. :/ You tuna pasta concoction does sound good - pasta is one of my safe foods when I flare, so I think I might try it! :) I hope you feel better over the weekend, and have fun shopping! :)
 
Allie, I don't mind taking a higher dose of Amitriptyline, but it doesn't seem like a solution to a flare. It took a little while for my body to get used to Amitrip when I first started taking it, but now I like that I can zonk out and sleep pretty well. Since I first became ill, I went from being a night owl to an early bird - my brain lately has decided that I'm going to wake up around 5 AM every day. I think that's because it's almost summer now and the sun comes up around 5, and as soon as light starts peeking behind my curtains, my eyes pop open and I'm awake. So, maybe the higher dose of Amitrip will help me sleep until my alarm goes off. Gotta look at the positive side of this, right?

I hope I am well enough to shop tomorrow! Now the weather report is saying 80% chance of thunderstorms tomorrow so I don't know if I will make it to garage sales or not. I made myself a to-do list for this weekend (like I said, I'm stubborn!) and that includes things like finishing up some sewing projects that I'm working on, so if it rains or I'm too ill to leave the house, at least I won't be bored. :)
 
Finally got some good news, see the surgon the 26th and finally a gastro at ucsf the 28 of July. Im sorry you guys are in flare, the only thing that helped me medical mj food. I know thats a drastic change from the norm but I couldnt believe how quick it helped. It took 3 days of eating it to stop a 6 month flare.
 
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Hey all...sorry I haven't been in here as much as I'd like, but I haven't been doing too well lately. I'm sure you all understand.

I just wanted to stop in and give an update on my situation. So...being that my GI wanted to charge me $100 for my pill cam follow-up, I cancelled it. I had them send all my records and test results to my PCP and scheduled an appointment with him instead(I had other things besides my GI problems that I needed to see him about). Apparently the pill cam didn't show any inflammation in the small bowel. But my PCP wants to do have a stool sample analyzed since that's pretty much the only thing that has yet to be done. For now he put me back on Bentyl...even though I told him I've been prescribed it multiple times, and it simply does not work. But he wants me to take it for a month and go from there. *sigh* Fortunately, he did put me back on my proper dosage of xanax, and gave me two refills. That will help me tremendously. But aside from getting my xanax, I'm basically I'm back to square one as far as my current medications/treatment go. My PCP is also very adamant about having lymph node biopsies done to check for lymphoma. Crohn's and cancer would not be fun. :(

But it's not all bad news. Those of you who are aware of my situation know I live in the U.S. and am uninsured. I'm on a charity program at a local hospital, but coverage is limited. So my treatment has been anything but consistent, and has cost my family a lot of money already. The fecal lab alone costs $600, and I still owe $450 on my pill cam. So I took Cat's advice and talked to the office manager at my GI's office(who also happens to be his PA) about what other options I may have to cut the costs down. She then told me about a program they have in my area for people in my situation. The reason I hadn't heard of it was because they require a doctor's referral just to see if you qualify. They set up an appointment for me and I went in there yesterday. And I must say, that appointment couldn't possibly have gone better! The lady who I met with is in charge of the program for my county. When I arrived she already had all the paperwork filled out for me, which seemed a bit odd; all I had to do was write my John Hancock a few times. She had basically already approved me without even talking to me in person. Then she said something that shocked me, but made everything make sense. She said, "I know first-hand what you're going through, and we are definitely going to get you some help". She then proceeded to explain to me that she had been diagnosed with a severe case of U.C. 5 years ago that continues to get worse. I couldn't believe it! Of all the people I could have met with, I actually got someone who understands! It's unfortunate that she is battling IBD, but it made it a lot easier for me to get on this program. The whole appointment should have only taken about half an hour, but we sat there and talked for over an hour even after I had signed everything. So not only did I get approved for the program immediately, but I got to talk with someone who understands, face-to-face. I have never had that opportunity before. She even told me that I could call her any time if I needed someone to talk/vent to. We also discussed setting up an IBD support group in our area. Apparently IBD is quite prevalent where I live. So after hearing the pill cam didn't show anything, this did wonders for my spirits. And now, as long as I find a doctor that takes my coverage, all I will have to pay for is prescriptions(and ER visits, ambulance rides, etc.)! She even told me to send her the bill from my pill cam, and that they would pay off the balance! Also, when she looked in my chart, my GI had my condition listed as "possible small bowel Crohn's". So I'm guessing he still thinks I have it; even though the test results haven't shown anything except slightly elevated CRP. I'm just glad they didn't have IBS listed as the cause of my problems. I'm so sick of hearing that! Other than my chronic diarrhea, my symptoms are not consistent with IBS! Hearing "possible small bowel Crohn's" gives me hope that a true diagnosis may be just around the corner.

So now I don't have to pay for anything done at my GI's office or at the hospital he works out of. The thing that sucks is I can't get back in to see him until the end of June...though I am on the cancellation list. I suppose that's better than nothing. For now I just need to find a lab that will accept my coverage so I can have the stool analysis done(Quest and Lab Corps don't accept it), and a doctor that will accept it for a lymph biopsy.

So that's where I'm at now. Still holding out hope for a definitive diagnosis, but I'm going to have to continue to be miserable for the foreseeable future. What are the chances they'll give me some tramadol for my pain? I need something if I'm going to have to keep waiting.

I hope you are all doing well, and that a diagnosis will come soon for us all. And a special thank you to Cat for suggesting I find more information about charity coverage. I can already tell it's going to help out a lot. And I just found out today that my mom may have leukemia, so my presence in here may continue to be sporadic. I'll try and keep everyone updated as much as possible.

I also want to welcome all the new members. I haven't been on this forum for very long, but I can tell you that the people in here are wonderful and truly care. Heck, we gotta stick together since most people seem to think we're faking, or just have IBS. As far as I'm concerned, IBS is B.S.!!!
 
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Ifeelsick, it's so wonderful to hear that you found an understanding person to help with the financial stuff! And it's great that she wants to put together a support group with you, and also wonderful that your GI thinks it is Crohn's after all and that you may be near a diagnosis! So happy to hear you're finally getting somewhere. :D

I am really sorry to hear about your mom, I hope it turns out to be nothing. And I hope you don't have lymphoma either. I feel for you, there's a fair amount of cancer in my family - my mom's parents both died young from cancer (colon and breast cancer). Of course we understand that you won't be around the forum very much due to these issues - please do drop by when you're able to and give us an update, we'll keep you in our thoughts.

As for the tramadol, my understanding is that primary care docs are much more likely to prescribe pain meds than GIs are. So you might want to start there. Good luck! Hoping for the best for your lymph and stool tests!
 
How's everybody doing today? I'm a bit better, did a lot of resting over the weekend. I'm definitely not 100% but I'm hanging in there. I even did a bit of shopping over the weekend and I got a juicer at a garage sale for $10! So how are you guys doing?
 
Hi Cat :)

I thought maybe we should stop high jacking Davids thread :lol:

Yes, they do prescribe prednisone to treat costochondritis. Personally, I will do anything and everything I can to not take it...I hate that drug. I know it is so good to help with several different medical problems, but only for short term IMO. And once you start using it short term, over and over, your body of course builds up immunities to it and then you need stronger and stronger doses. CC will usually resolve itself within a couple of weeks, sometimes days, depending on the severity of the flare at the time. Yes, it is painful, but now that I know it's course I usually just suffer through it. And, btw, sleeping semi-upright in a recliner helps to relieve the pressure so you don't have to favor sleeping on one side or the other :)
In your case, yes, it just may help your GP to prescribe a short term dose if CC is now coupled with intestinal issues as well.
Geez, you have suffered long enough with intestinal issues..I sure hope you don't have even mild CC because it doesn't always stay "mild". :eek:
 
Thanks Crohn's mom! I've tried sleeping upright or semi-upright because of my acid reflux, but I just cannot fall asleep in a position like that. When my gut illness flares I can't lie down or I get so nauseous, so I end up sitting upright and awake all night. Sometimes in a flare I can nap in short intervals of 20 or 30 minutes every couple of hours while propped up on some pillows, but generally speaking it's really difficult for me to sleep sitting up. I wish I could sleep like that, it'd make flares so much easier not to mention the acid reflux!

Okay, I need your opinion on this now - should I ask my GP or my GI about my possible costochondritis? I'm guessing it's not directly related to my GI issues so I should probably see my GP about it?
 
I would ask your GP to begin with. Although, I can't see how it would hurt to mention it to your GI ? After all, even tho they are not the same thing, CC is an inflammatory issue and maybe they are more connected then we know ??
I too am undiagnosed for CD (going on about 15 years now), and I have always considered my various symptoms connected some how. Again, it's just my opinion, but it doesn't hurt to mention it to both doctors right ? :)
 
Sadly I have always had to let CC run its course. Docs have never given me a darn thing for it. It can hurt BAD! I'm glad you are better Cat.

I had an epiphany this weekend. Just because my GI didn't find Crohns Thursday doesn't mean I don't have it. It just means my colon isn't damaged yet. That's a good thing. I am acting as if I have Crohns and modifying my life accordingly. I have to in order to make the changes I need to ensure my health is as optimal as possible. I believe I have Crohn's, we just have to find it.

My right ankle itched Friday. I scratched. My skin just peeled off. It's not big, but it itches and stings. It troubles me that it just peeled off. My legs are red too. I'm freezing today, but I am hot then cold.

I ate poorly Saturday night, but I am in the clear now. I have to maintain a bland low residue diet. Otherwise I am sick!

I hope that everyone is okay. It's quiet around these parts. I hope that's true for everybody's bodies. Tee hee!
 
Quirky I must have missed that your CT results came back normal, sorry! Not the best outcome is it :-/

Well I realised something today and I feel foolish. I saw the phrase "black tarry stools" on here and it made 100% sense straightaway. I just figured poop comes out different colours and thought no more of it but now I realise that means blood, and it's happened several times too me. So, another thing to add Wednesday for GI!

I remember once recently it happened, i'd liken it to a mineral rock that has a seam of colour running through it. It was like 1/3 black and 2/3 poop. Oh dear :(

Maybe they will do FBC again (if GI won't I am going to GP, want CRP monitored anyway) as I did stop my iron supplement in case it was masking a bleed. GI did know which vitamins I was taking though. Or a FOBT at least which I haven't had- I had stool test in 2006, don't know what tests they ran though, and one a few years ago to check for norovirus.

That was one of the excuses for cancelling Pill Cam haha! Partly because they have an IBS mindset and the test is expensive and needs approval, but the letter I had said it was most useful in patients who were anaemic with a suspected small bowel bleed.

Geez that is a bit more serious than a few spots which is what I found last week.
 
Crohn's mom, I didn't know you are undiagnosed too!! And for so long? You poor thing! I have seen your threads about your daughter and then I think you posted that you have two other children that are undiagnosed with IBD-like symptoms too? How awful! I guess in a way it's good that at least you all have each other for support. I'm the only one in my family with (probable) IBD, unless you go back as far as my great-grandfather who had UC. My grandfather on the other side of the family may or may not have had IBD - all we know is that he had "stomach problems" all his life and later died of colon cancer at a relatively young age, I think he was only about 60. But, nobody in my family who is currently alive has IBD. I'm the only one, and it's really isolating to be the "black sheep" and feel like none of them understand what I'm going through.

Meg, you're absolutely right, just because they didn't find anything in your colonoscopy doesn't mean you're not legitimately ill! As I'm sure we all know, Crohn's can manifest anywhere from mouth to anus and usually hides out in the small intestine. Sometimes it's not visible but can be seen in biopsy - but, since it has a skip pattern, the exact right spots would have to be biopsied or that would come back normal too! So, it's not all in your head and it's not "just IBS", it's just being elusive. Hey, I can certainly relate to that! ;) Oh, and you mentioned redness and peeling skin on your legs - make sure to mention that to your GI at your next appointment. Skin issues, and it seems especially on the legs, can be another symptom of Crohn's. (It seems like everything can be a symptom!)

Star, sorry to hear you're having tarry black stools but hopefully this means that you have another shot at getting the pill cam. I had a few times awhile back where I thought I had bits of tarry black blood in my stools, but upon reflection, I realized that I had eaten mushrooms the previous day every time that it had happened. So I think that was just my body's way of saying I shouldn't be eating mushrooms? It hasn't happened since so if it happens again I won't be able to blame it on mushrooms and I will then assume it really is blood. Anyway, I hope your GI and/or GP are able to get you some more tests ordered based on the fact that you've now had both red blood and dark blood. Surely they can't ignore that! Especially if you do turn out to be anemic. Good luck, I hope you are able to get more tests. Keep us posted!
 
Gold luck Star!!!!!!!!!! I am sorry to hear about the tarry stool as well. Good luck with the pill cam.

Thanks Cat! I'm sorry you're the only one. Your hubby is understanding, right? My mom and I supported each other and both got oatmeal at the family breakfast. We eat at the same diner every week. I could only eat half. We agreed Saturday we would support each other. She asked if I had been good and eaten a bland diet. She said, "Oh well, you're 34. It's not like I can control you anymore." Tee hee.

I will bring up the skin to my doc. I thought the same thing. It was weird. It just happened out of the clear blue. I took a picture with my cell phone. I have logged it in my journal. I have journaled everyday since the 11th.

Going on a bike ride tonight. I am feeling good on a bland diet. Getting bored, but feeling good and motivated to stay on it for the health part.
 
Hey everyone...

I'm pretty sure my GI appt today went the worst way it could have gone. :( My SBFT came back normal, as expected, and my GI has decided to not do the pill cam because of it. He is completely set on it being severe IBS, saying that the blood was from internal hemmroids (but none were seen during my colonoscopy in December), and that I blacked out because of the pain, and that the pain is because I have a "sensitive gut". My B12 was on "the lower side of normal" so I am wondering if it was climbing back up after a flare. He said that the sore on the corner of my mouth could indicate that I might have another autoimmune disease (he mentioned lupus twice), and that I need to pay attention to my whole body to see if any non-gi symtoms are going on...if he thinks its autoimmune, crohns is autoimmune, why is he trying to go away from that? UGH.

So, he took me off the amitryptiline and put me on its cousin, noratripytiline. 75mg, three times a day, and I have to go see him in a month. He also gave me more tramadol when I asked what I should do when I am in extreme pain. He had me get more blood drawn for more tests because of the bleeding, and if they come back with me anemic (which has never happened) he will call me for the pill cam...doubting that.

I'm giving up for awhile. I'll see him in a month to see what he wants to do next, but I'm not persisting on any more tests. I'm thinking if this is crohn's it has to get worse and show up on tests at some point...so I'll wait a year or so, and if my symptoms/condition are the same/worsening I will try again with rounds of testing. I guess it just isn't serious enough to show up. I'm def still going to hang around here though, because I really don't feel like this is IBS....
 
I'm so sorry to hear that allie :(

Quirky, no pill cam, I had one booked in March but they withdrew it. So hoping new symptoms give me a shot at it if CT scan is clear. In any case I will be changing GI's as he is ignoring alot and if the blood is another thing he ignores that is it. Even though it was at a meeting of all the GI staff that my Pill Cam was cancelled!

The Pill Cam really gets me going. It's obviously an expensive test which is why some struggle to get given it. Not all but I have seen alot of people here being diagnosed with it when everything else is normal. I have no idea how much the tech costs, but don't the drug company who developed it realise lowering the price will bring them more $$!
 
Meg, my husband is pretty supportive... now. Honestly, when I first became ill, he was not terribly supportive. The very worst was when his father, my father-in-law, had a few too many drinks last year at Easter and he then proceeded to basically tell me that I'm faking or not as sick as I say I am, and that I should just eat normal food with the rest of the family. He even insinuated that if I'm no longer able to cook with my husband then our marriage will fall apart. And my husband didn't defend me through my f-i-l's tirade. I cried and we left and had a long talk and things were a little better after that. But hubby would still sometimes say things such as, I shouldn't let my guts control me and I should eat popcorn if I want to (or whatever trigger food) and not let my guts boss me around, etc. So he still didn't really "get it" until more recently. The real turning point was in December 2010 when hubby started having abdominal pains and vomiting, which was diagnosed as kidney stones. Hubby now understands what it's like to live with pain & symptoms that can come out of nowhere, and he now also understands that if certain foods can make my pain worse then of course I would avoid those at all costs. My mother-in-law, who has been so supportive of me and genuinely tries to understand, apparently had a talk with my father-in-law. The last time I was at their house, my husband cracked a little joke about how I couldn't eat something, and my father-in-law actually defended me (!!) and said that it must be really hard to not be able to eat what I want. So, it took some time, but both hubby and his father are finally understanding that I'm chronically ill and can't just wish away the pain or symptoms. It's a good feeling - definitely much better than last year around this time! Now hubby's scheduled to get his kidney stones removed in a couple of weeks, and I have to say that I'm not totally happy about that - part of me wishes he'd stay in pain as a reminder of what I go through. I hope he's able to remember his pain in the future when I flare so he can continue to empathize and be supportive.

Sorry, that was too long, I'm going to start a new post to respond to Star & Allie!
 
Allie, I'm so sorry to hear that your SBFT came back normal and that you don't get the pill cam. Geez, there's been a lot of pill cam disappointment around here lately! :( If your GI thinks you have lupus, or something autoimmune, couldn't he try you on something like prednisone (I think that works on most if not all autoimmune illnesses)? I know it's tempting to give up, but please don't! Take a short break, sure, to try to get over the disappointment from yet another "normal" test result. I've been there! But you can't give up for such a long period of time - yes, your illness will probably get worse if left untreated. But although it may show up on a test more easily, it'll also mean a LOT more pain and suffering for you, and you don't deserve that! You've got to keep fighting. I know you're coming back to the US relatively soon, right? And didn't you once say that you have a great GI here who is pretty certain that you have an IBD? Maybe take a break from tests and doctors for the rest of your time in Germany, but please pick up the fight again when you get back stateside! You know it's not IBS, I know it's not IBS, I think everybody here knows it's not IBS! So keep fighting!

Star, if I'm remembering right, I think the pill cam costs about $1500 over here. I could be wrong but I seem to remember that number. So it's not a terribly expensive test. I think a lot of doctors don't like to do it because of the amount of time that it takes for them to look at each image. The pill cam takes tens of thousands of images and of course the doctor has to look at each image for evidence of illness - that takes many hours. So I suspect they might have cancelled yours because they couldn't be bothered to do the work, not because of the cost (for reference, I believe a colonoscopy averages about $1500 here as well, so it's not any more expensive than an extremely routine test, it's just a lot more time consuming).
 

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