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Shan, its good to see you around again! I'm sorry you are so sick in the morning. :( I don't have that issue, I am usually my worst in the evenings after a normal busy day. I do know that Cat has very similar issues, maybe she can give you some helpful advice on how to keep it at bay. :) Whats your plans right now health wise? Are you at a point where you are just trudging along per say? Either way I hope you are feeling better soon!

I just have to say, you guys are amazing group of people. You guys make me blush every time you remind me how you are anxious over my test results too! I don't know what I would do without you guys to get through this. :)

Joan, thanks for stopping by our now mega-long thread. :) I hope you are doing well!!

Good luck Sunshine! I really hope it shows whats wrong!!

Well, I called the GI clinic yesterday about my test being looked at by another doctor, and they still haven't gotten back to me. They close in an hour for the weekend..I'm tempted to call again. I haven't quite decided lol. Of course now that is has been a little over a week since my test, its only a little over two weeks until my GI gets back. At this point I'm just rolling with the punches with this entire situation; if I stressed over it while dealing with this move, which already has me in a ball of nerves, my flare would be even worse..I can't even imagine that right now!

Today is my last day in Germany, and it hasn't been the funnest day. It was an "organization day" for my husband's unit, so all the soldiers and their families went to a park on base and ate food and had fun as a group. It isn't really summer weather here anymore, I was in a long sleeve shirt and pants, and I was still cold! It started raining about an hour into it too, which didn't help. Twenty minutes after lunch my intestines decided my lunch wasn't staying, and I ended up doubling over in pain in front of everyone. To make matters worse, my husband planned the entire thing, so we got attention when he had to help me get to a bench to take meds. My husband was actually the one who bought the food we ate, and he informed me the burgers were made out of sirloin...I'm guessing my intestines didn't like that type of beef. I also had the pleasure of running to the portapotty in front of everyone too. Oh well...I'm leaving with a bang!

I hope everyone is having a good day!
 
Allie, I would call again. The squeaky wheel gets the grease!! Who cares if you bother them? That doctor told you you'd have results a week ago!! Or was it two...I lose track of time.

Sorry you had that experience in front of everyone. Have a safe trip home.
 
Hey Shan, great to see you around the forum again! With regards to mornings being the worst, yep, I experience that too! Not so much now that I'm pretty much in remission, but definitely yes when my symptoms were uncontrolled. The only way I found to deal with it was to get up at least 2 hours before I had to leave the house. I usually have to leave for work around 7:30, so for quite awhile I was getting up at 5 or 5:30 so that I could have plenty of time to get through that rough patch of symptoms. With an extra couple hours like that, I could spend lots of time in the bathroom or have time for my meds to kick in before work, etc. I'm sorry to hear the gastritis in particular is still giving you such problems. When do you see the doctor again? Are you on any meds right now, and if so are they helping at all?

Joan, thanks for stopping by! And hey, if you really want to help us all out, you could always go to medical school, become a GI, and make us all your patients and figure us all out! Ha ha ha. Just kidding of course. Thanks for the hugs, you're a good friend and I know you understand. You were undiagnosed or misdiagnosed for, what, about 15 years? I know you can empathize with what we're all going through!

Best of luck, Sunshine! I was pretty nauseous when I had to drink the CT contrast as well, and oddly I really liked drinking that stuff. I was having an attack of low blood pressure and something in it (mine was mixed with lemonade, so maybe it was the sugar?) made my blood pressure go back up into the normal range and it made me feel really good. So even though I was nauseous and didn't want to drink that stuff, it was actually really pleasant and good. I hope that helps ease your fears a little bit! And don't worry if you can't drink the full amount either - they brought me 3 big glasses and said I should try to finish them all in one hour. I got about 2 and a half glasses down in that time, and they said that was just fine. Good luck today - keep us posted on how you do! Hopefully you'll get the results back quickly too.

Allie, I agree with May, give that GI clinic a call quick before they close! And I'm sorry to hear about the bad experience you had at the picnic thing. Good thing there was a porta potty there though! I hate going to parks and there's no bathroom. Are you normally able to eat beef without much problem? Red meat and beef in particular is one of my triggers, I gave it up when I was a teenager and every so often when I've tried to eat a hamburger (even before I became ill), it just makes me so sick. It seems like, when I stopped eating beef, my body maybe stopped producing the enzymes to break it down or something like that, and it just sits in my stomach and hurts if I try to eat it now. Anyway, I'm rambling again. Good luck with the test results, I hope you can talk to somebody at that clinic before they close for the weekend. I assume you're still going to actively pursue getting those results when you're back in the US? I hope you can get them quickly! We're all still waiting on pins and needles hoping for some answers for you!

As for me, I'm doing pretty good again. I had a bad couple of days which was because I ate too many unsafe foods (salad, berries, and carrot juice all in one day - apparently my body didn't like all that freshness and fiber). My GI bumped up my Prilosec which seems to be helping a lot - after just a couple days, I'm already way less bloated and distended than I've been! I had a really cool day yesterday, too. My co-worker gave me a bunch of Dove chocolates which was awesome, and then I got to hang out with another co-worker who also happens to be my dog's former owner (I got Lily from my co-worker because she was no longer able to keep her). So we talked a lot about the dog and this woman promised to email me Lily's puppy photos. Then, in the evening hubby and I walked the dog, and we were walking past this little creek when we heard a commotion. It was a kingfisher (bird) fighting with a small hawk or falcon! And in the creek, there was a big heron and a bunch of ducks watching the whole thing. It was like an episode of a nature show happening right in front of us, very cool! (None of the birds appeared to get hurt either so it was okay.) I feel refreshed after a day like that. Good stuff! :)
 
Yeah, I can normally eat beef! Hamburgers usually don't upset my stomach at all. This episode was pretty bad, like I had eaten a ton of watery fibery fruit. But I don't normally eat the type of beef the hamburger was made from...it was a higher cut of beef than what you would get at a fast food restaurant. I don't eat steak because it doesn't settle well, so I'm thinking this beef was more like that. And I agree with you, the body can stop producing the enzymes to break it down, we had a huge discussion on it in biology! That sucks though...I would be very upset if I couldn't at least eat some beef lol. :)

I didn't get a chance to call them unfortunately, but I am still going to pursue it while I'm in the states of course. I will have to figure out the long distance call part of it, but I'm not going to forget about it...I'm still really hoping this test finally shows the answers I need! I'm at the point where I really need something to be done, because its now been three months flaring, and I'm getting really weary about all of this. If I get any worse once I get to the states I might go into an ER just to get proper pain relief and maybe something to help speed this process up. My insurance always approves me for ER visits due to these nasty symptoms...because even if I just got an IV of fluids just to help stay hydrated from the nasty D would help! Too bad most ER's have turned me away so fast once I get there it usually doesn't help...but I'm much worse than I was the last time I was in the ER a year ago! I'm sorry I'm whining and complaining a bit, I'm getting really ragged from all of this! :(

Cat, I'm glad you are feeling better! And that's crazy with the birds! My dog would have ran off and tried to break up the fight. :p So are you going to get the puppy photos? Corgis are SO cute as puppies! :)
 
Allie, I use ground turkey in a lot of recipes as a beef substitute. My hubby has made meatballs out of ground turkey, he's made turkey meatloaf, etc. So it's not too terrible that I can't do beef anymore, turkey is a pretty good substitute especially if you add steak sauce and worchesteshire (however you spell that!) sauce to make it taste more like beef. Although there was just that ground turkey recall here for salmonella so I'm a bit iffy on turkey right now too. I actually had some recalled turkey in my freezer! I threw it away, so glad I hadn't already eaten it!

I really hope to get the puppy photos soon, she hasn't sent them yet though. Lily's former owner is a manager at my workplace and she's very busy so it may take her a little while, but she said she set herself a reminder in her smartphone to send the photos. There's one photo in particular I want to see - she told me that when Lily was just a little puppy, she got bit in the nose by a snake (they used to live in California). It apparently a wasn't poisonous snake but Lily did have kind of a bad reaction, and her poor little corgi snout swelled up huge! It sounds sad and cute at the same time. (Don't worry, Lily's fine now, no lingering effects from the snakebite and you can't even see a scar.)

And I totally understand that you're getting sick of flaring! You definitely deserve some relief already. If ERs try to kick you out so quickly, have you tried going to urgent care clinics? I've gotten IV fluids from the urgent care clinic here more times than I care to remember. And the only time they tried to kick me out quickly was the time that I came in 30 minutes before closing time. The doctor even said something to the effect of, "Next time try to get here a little earlier than 8:30!" I was like, yeah, I know that you close at 9 PM - but it wasn't until after 8 PM that I felt like I was too dehydrated and needed some help. Sorry if my awful chronic illness is an inconvenience to you! Sheesh! Anyway, I hope things work out when you get back to the US, especially as far as getting those test results and getting your insurance to approve you to see a doctor or go to the ER. Keep us posted, and have a good flight home!
 
We use a lot of ground turkey too! My husband loves making turkey burgers because they are healthier for you than ground beef. We also use turkey in our meatloaf. :) It tastes almost the same!

That does sound cute, even though she probably didn't think it was. :p

Thanks! Yeah I have been to urgent clinics before as well, both times for the GI issues. At the point I went to them though I still wasn't seeing a GI, I was being real stubborn about it because of who I had seen in the past. One just gave me nausea meds and said they couldn't do anything else (I think they thought I was a drug-seeker, because I explained the pain was causing the nausea), and the second time they did an x-ray and found nothing, so they prescribed me dicyclomine, which didn't help. I have never gone to an ER/urgent care for fluids, but because of the D they seem to do that automatically now, which I think is helpful. :) I was on a slow IV of fluids the entire time I was in the German hospital, which was interesting. I had my pole with me at all times, even when hubby and I took walks!
 
Cat & Allie, the CT prep stuff that I had to drink made my stomach bloated and irritated of course! and of course even more nauseous than I was, but I'm so happy it wasn't as bad as the barium, it was a lot better since it was mixed with lemonade like yours. I only got down a cup and a half of the three they had for me. She said since I'm little, it would be okay, since I almost got sick in front of her haha I told her I wasn't feeling well... gosh, people just don't understand haha. She probably thought that everyone says that because they don't wanna drink anymore, but oh well lol. Apparently everything went nicely, and my doctor should get the results by Monday or Tuesday. Glad the CT is over with!! :) I feel so accomplished! haha :p
 
That's great that it worked out Sunshine! I really hope it shows whats going on! fingers crossed!

So I had a completely CRAZY weekend, phew! I am still completely jet lagged from my flight. I am so glad to be back in the states though! I now get to catch up with everything I missed on here...I thought this thread would be a little more active to be honest! Maybe we all had a crazy weekend. :)

My GI office called my German cell today, and my husband has it so he answered. They want to see me ASAP. So...I'm very curious as to why, lol. They wouldn't discuss anything with my husband, but he said they didn't sound concerned or anything. Hubby explained that I'm out of the country for now, and they are actually going to call my US cell number at some point at schedule a phone appointment. With the effort they are making, I'm really hoping they finally know whats wrong. Because I have never seem them care so much before! I'm trying not to get my hopes up though.
 
Sounds promising allie! Will keep my fingers crossed and an eye out for news.

I haven't posted since no point in putting up more of the same lol. Really depressed right now and the waiting for appointments/test results/test approval really is becoming intolerable :(

I hate what my life has become and I am powerless to change things in any way, everything I try fails so why bother anymore?
 
Yeah, Allie, I hope that's good news, and not more "no news."

Sorry you're so depressed, Star. I don't really have anything more to say, other than to hang in there. And we're all here for you.

xo
May
 
I'm so sorry Star. :( I understand what you mean though...it really feels like a time warp where the same thing happens over and over and nothing gets better! I hope you find something in life to keep your spirits up...friends, family, favorite things, etc. Its really the only thing that keeps me going! I really hope things turn out for the better ASAP for you!! Many hugs to you across the pond!
 
Allie, yes, I can definitely say I had a busy weekend! I tried to pop in the thread on Sat night, but when I logged on I reported some spam and then got tired and went to bed instead. This remission stuff is pretty cool though, I actually have a lot of spoons lately and can do stuff! I hope everyone here gets to experience remission for a very long time, it's wonderful. On Saturday I did some errands, went to visit an old friend who I hadn't seen in years, and did some baking. Then Sunday I had a picnic with my crohnie friend (low residue lunch! Pasta and Ensure... and some fudge too, ha ha). And it was move-out day on campus, which is a big event here. The campus here is known as having a lot of spoiled rich kids, and when they move out of their summer apartments they throw a lot of good stuff away, so a lot of people go scavenging for good stuff. My friend's fiance found a working Nintendo gamecube, with a game in it, and with all the cords & controllers and stuff. I didn't find anything for myself, but my crohnie friend got a bookshelf, some pots & pans, a winter coat, a chair, and an apparently brand-new vaccuum cleaner (it even had the warranty card and instruction booklet and all the attachments with it so I don't think it was ever used!). It's ridiculous what some people throw away, especially the rich college kids around here. So that was fun, but pretty exhausting too. But, I'm not paying for it today! Back before my symptoms were controlled, if I had an exhausting day like that, I would definitely pay for it the following day. But today I've still got plenty of spoons! So yeah, I'm really enjoying this remission thing, it's lovely. :) I hope you guys get here soon too, and at the very least I hope I've given you something to look forward to!

Allie, that's exciting that your German doctor actually wants to get ahold of you and seems to care, I hope that means they have test results for you! I hope the phone appointment goes well, as always keep us posted. What's the time difference between Atlanta and Germany? If I am remembering right, when I went to Germany 10+ years ago for a family vacation, I think it was something like 8 hours difference? Hopefully the phone appointment can be set at a time when you're not normally sleeping here. Are you jet lagged at all?

Star, I concur with what May said, and I wish there were something that I could say to help you feel better. We are all here for you! Hoping the 22nd arrives quickly for you with no flares. Only one more week until you see the new GI - fingers crossed for you!

Sunshine, glad to hear the CT went okay. I'm sure the nurses do hear from a lot of people that they don't feel well from drinking the contrast, but I'm also sure that is totally true! When I had to drink mine, I went into the waiting room and there were a few other people there, and one guy in particular looked so pale he was practically grey, he looked like he might vomit at any second. That didn't seem promising to me! I don't think the guy actually did vomit, but I'm sure that some people do and the nurses are probably all used to that happening. Anyway, I'm rambling again. Have you gotten your CT results back yet? Good luck, I hope it finds something!

May, how are you today? How's your brother doing? Did you go to the spa yet? :)
 
Cat-a-Tonic said:
May, how are you today? How's your brother doing? Did you go to the spa yet? :)
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I'm doing okay, Cat, thanks for asking. My brother is doing fairly well. He got out of the hospital Wednesday, which was much quicker than I expected. He's still on antibiotics for some infection in his lungs I believe. I texted his girlfriend the other day, and she said he's doing well. He told dad he wasn't feeling so great yesterday, and dad reminded him that it was only a week ago roughly that he was getting off the ventilator, so probably things will slowly improve, but of course to go to the doc if he thought things are really not right. Mom said that his girlfriend isn't filling the rx that the docs gave him for some social anxiety. She said she wants to help him work through this stuff without the use of drugs if at all possible. I tend to agree - I think he was probably taking Xanax legitimately at one point but when you have a habit of abusing things, even prescription meds can lead to trouble. I really like her. I don't know how he found such a high calibre woman. He owes her his life, for sure. Still talks positively about turning his life around. So that's good. I'm sure nearly dying would shock some sense into most people.

My appetite is slowly returning in the mornings, albeit slowly- I haven't gained any weight back yet but I haven't lost any more. When I was in NY every joint ached - even my jaws ached. I guess it was stress. Stressful situation and a stressful place to be in - esp for a laid-back Southern girl like me. ;) As soon as I got home, that stuff stopped, but I still couldn't eat very well. In the mornings I still have some issues with loose bowels. Hopefully that'll go away here soon, although it had started even before the whole thing with my brother.

And no, I haven't gone to the spa yet. I need to get on that!!
 
Cat, That sounds like a great weekend! Ensure at a picnic...ha ha that is something that you wouldn't think of. :p I'm so happy you have your spoons back and are able to do as much as you are doing! That's crazy with the college thing...I just went shopping this morning for odds and ends for my room in the sorority house, and it was crazy expensive! It was little things too, like a desk lamp, laundry basket, etc. I know wont need this stuff at the end of the semester, but I wont just throw it away! I will find a sister or friend that needs it!

I am very jetlagged! I've been doing everything you are suppose to, like stay up as late as you can and try and not think about the time difference, but I am still waking up at 6am and not sleeping well through the night. So the stress of it is not good on my tummy! Everything I have tried to eat has gone right through me, and I have been so busy that I haven't been eating three times a day. I am looking forward to getting a routine down! There is a 6 hour difference between here and Germany, and it makes it hard with trying to keep in touch with my husband. It was one of the reasons I left in the first place, because I would wake up, realize my husband was already halfway through his day, get sick to my stomach, then not eat, so I was in a nasty flare. I'm trying to not let it get to me as bad, which it isn't thank goodness, but it is hard nonetheless! But it will be easy to set up the appt with the GI, since the time difference isn't too bad and they do their patient appointments in the afternoon.

May, I'm so sorry about your brother! I'm sure that must be so stressful for you. My sister is going through her own issues as well, and it is scaring me to death! I hope NY was fun even though you weren't feeling too well! And I hope your symptoms get better soon too. :) You really do need to get to that spa! ;)

Yeah, I almost forgot (May's brother's situation reminded me), my sister is going through her own digestive issues. :( She works 12 hours a day for a door to door meat selling company, and lives in an extended hotel, so she doesn't eat very well. Lately she has had nasty symptoms, and she went to the doctor, and they think its her gallbladder. I don't know if they have confirmed it with tests or not, but they want to remove it, and they told her to eat healthy and see if it fixes the issue. I'm really hoping she gets better soon! One of my sorority sisters also has a stomach ulcer...its made me realize that being sick isn't really that abnormal!
 
Thanks everyone :) Just wish something would happen already. Some results or a test date.

As for the appointment, Rheumy seems to be moving away from testing GI area, so even if I did think it might be a little useful before, I really don't now! Hopefully though test results x2 will be in.
 
May, your brother's girlfriends sounds wonderful! I hope she sticks with him, it sounds like she's doing him a world of good. And I can definitely understand that it was a stressful time, glad to hear you're doing better now that your brother is on the mend and you're back home. Now go make that spa appointment! You deserve some pampering after all that! :)

Allie, sorry to hear that your sister is having some issues as well. I remember reading a statistic awhile back that says that siblings are the most likely to get IBD if another sibling has it - parents and children are less likely for some reason. Ever since I read that, I've kept an eye on my brother. Maybe I'm just paranoid about IBD, but he once told me he poo'ed "black stuff" which freaked me out. And he smokes a ton of pot which makes me wonder if he's self-medicating an undiagnosed IBD. It's probably nothing, but it makes me worry. He's my only sibling so he's the next most likely person to get IBD, assuming that's what I have. And I'm nearly 6 years older so I've always looked out for him, although I need to remind myself sometimes that he's 26 now and is an adult and can take care of himself. I did ask him to move out of my house so that's something. Anyway, I'm rambling but I hope your sister is okay. That job of hers sounds crazy! We've had a few of those door-to-door meat salespeople come to our house, but I always assumed it was a scam or something (and I don't eat beef or pork anyway) so I always just told them to get lost. I'm guessing your sister gets that kind of reaction from people fairly regularly and that's got to be stressful, let alone the stress of working 12 hour days and living in a hotel, so that job is surely not helping with her health! I hope she can get to the bottom of things and that it's something easily treated and not IBD.

Star, if your Rheumy is moving away from GI testing, then I hope your new GI is willing to do more GI-specific tests. I would hope he/she would at the very least do stuff like CRP and other blood work. And who knows, from what I've read on the forum, often times when people switch to a new GI, the new GI wants to re-do tests like colonoscopy to see for themselves if the previous doctor missed anything. So hopefully that'll be the case for you and you'll get some new tests or some do-overs. I know that going through tests, especially repeating ones you've already had isn't much fun, but if it leads you to a diagnosis then it's worth it.

I forgot to mention this in my previous post - I'm close to "graduating" from physical therapy! My therapist thinks I've made good progress (and, more importantly, she's due to give birth VERY soon so she will be out on leave soon) so I've got one more appointment with her and then I should be able to carry on with my exercising on my own. I've definitely noticed a big improvement with my hip pain. Back when I first got diagnosed with hip arthritis, it would ache for hours, days, and sometimes even a full week at a time! I remember trying to walk my dog at one point but I was limping so bad that I wondered if I was going to need a cane soon. I'm sure that being in/near remission helps, as most of my joints ache badly when I am flaring, so I'm sure that's part of the reason why I'm currently not feeling as much hip pain. But, it's so good lately that I barely have any hip pain! I walked the dog the other day, and it was kind of a long walk. My hip ached a bit for about 10 minutes when we got home, and then it felt fine! So to go from it aching horribly for hours or days, to it aching a little bit for a few minutes, that's great! I've tried to be really consistent and do my physical therapy exercises every day and I can tell it's been helping a lot. I feel kind of proud that I get to graduate from PT! I wish my therapist could give me a diploma or something, ha ha. :)
 
Cat that's great news about your "graduation"! You should be proud of yourself.

As for repeating tests, I won't even consider it for another 6 months at least. Physically I am not up to going through prep again and I personally don't see there will be any different outcome. I know some go through scopes every year and cope, but that is not for me! Doubt I will be offered it anyway. As I had an IBS dx from that department in 2006, they will not and do not want to go away from that. The normal tests I have had since then only cement that viewpoint.
 
Allie, I'm very excited for you with the results hopefully getting discussed with you soon!! :) that's wonderful!!

Cat & Mayflower, have not received any results yet from the blood work or from the CT scan. They said that should be in by Wednesday at the latest.

I decided to postpone my pill cam that I was suppose to do on Wednesday. Because I talked to my doctor and he said maybe I should get a double balloon endoscopy done, since it takes biopsies. But he would need to send me to the Mayo Clinic to do that. I am going to have an appointment with him on Friday to talk about the CT and blood results, and to discuss if I should honestly do the pill cam or the double balloon and what his reasons are behind it. I will feel much better after discussing with him what's going on and what is the next step about the pill cam or double balloon. He's the only doctor I have ever really trusted this much, so I always need his opinion and his advice! The only difference between the pill cam and the DBE is just that it takes biopsies basically right? Otherwise, they are both 2 of the best tests to do? I wonder what he's thinking. Thanks for listening to me ramble on haha :p
 
Sunshine, with regards to pill cam vs DBE, your doctor will probably just go over the risks & benefits of each type of test so that you can decide for yourself which one sounds best. Yes, DBE can take biopsies and pill cam can't. Pill cam has a small chance of getting stuck somewhere along the way if you have any narrowing going on, and DBE has a small chance of perforating the bowel and of course the risks of being under anesthesia for a couple of hours. In my understanding, DBE is slightly riskier, but can take biopsies so it also has a slight benefit. With both you'd most likely have to do prep so that'd probably be the same for either test. Personally, I've had the pill cam but not DBE - I can tell you that, aside from the prep, pill cam is a very easy test to have done. I haven't had DBE but if I were flaring I would definitely jump at the chance to have one done. The fact that it can biopsy the entirety of the small intestine is something that no other test can do right now. If you go for DBE, make sure that they take LOTS of biopsies to make it worthwhile!

Star, I completely understand not wanting to re-do prep again anytime soon. I hope this new GI does offer you something in the way of GI testing though. Something fairly easy and not requiring prep of course. Have you had an MRI of your intestines yet? I don't believe that would require prep and I'm not sure if it even requires drinking contrast. So that might be a really easy one, if it could be approved of course.
 
My old GI wanted me to have an MRI-follow through after my colonoscopy, but apparently it was difficult to arrange. So I had the barium SBFT instead. Also the CT scan did look at my intestines, although only with the contrast dye.

So yes/no really!
 
Cat, yeah I do worry about my sister too! I thought about the same statistic when my mom told me she is having so many issues. I'm hoping the GI she is seeing has it pinpoint correctly, so we will see how it goes. I told her if she needed to vent to call me, because I can relate to what she is going through!

Sunshine, I think that's a good idea with postponing the pill cam! I mean, with waiting on the CT scan results, it seems like a good idea. I hope your appointment goes well!

My GI's office called my husband again today. He says they said they refilled my meds and are calling me 10AM est tomorrow. I am really confused and I am trying to not get my hopes up...
 
allieinwonder said:
My GI's office called my husband again today. He says they said they refilled my meds and are calling me 10AM est tomorrow. I am really confused and I am trying to not get my hopes up...
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I will be anxiously awaiting the outcome of this. I hope it means someone looked at your slides and saw something definitive!!

Sunshine, I agree with Cat. DBE wasn't ever offered to me as an option. I don't know that I've heard of many of us undxed-ers being offered that test. I would jump on that if your doc is offering it as a possibility since it does have the advantage of being able to take biopsies. Like Cat said, it has its inherent risks, but so do most tests.

Hope everything goes well on Friday. Maybe the CT will have shown something and it will be a non-issue.
 
Allie, I agree with Mayflower, I am so anxiously awaiting to hear what your GI found in your pill cam results. I really hope that they tell you that this is the end of the undiagnosed road, because they will be treating you asap! :)

Mayflower & Allie, I am excited to talk to my GI doctor on Friday to see if maybe the CT scan showed something or if my blood work showed anything. And then of course to further discuss which I should do, pill cam or DBE. I'm thinking DBE sounds like it would show more, because it has a chance to do biopsies! Which is always a plus. But we will see what he says. I'm surprised you guys haven't had the chance to do a DBE, I wonder why they wouldn't offer that to more people who are undiagnosed, considering that just because you can't see something doesn't mean nothing is wrong as we all know, so biopsies would be able to see the wall of the intestine. I'm anxious for Friday to come!

SUNDAY IS MY 21ST BIRTHDAY!! :) and my boyfriend's is the day after!! Crazy! We are gong to St. Augustine for the weekend, so I hope my tummy can enjoy the vacation and not get mean and grumpy haha.
 
Sunshine, we love St Augustine!! We are going there for a vacation in September ourselves. I hope you have a great weekend and your guts allow you to have some fun. Turning 21 is great. ((sigh)) I remember when I was your age lol. Have a great time!!
 
Sunshine, happy (early) birthday! Have a fun weekend, hopefully your health will cooperate and allow you to enjoy yourself. So, if I'm reading that right, you're going to get the CT scan results on Friday? Good luck, I hope you get an early birthday present in the form of some answers! Keep us posted, wishing you luck!

Allie, how'd the phone call go?? We've all been on pins and needles for days (weeks? Has it been weeks already?) waiting to hear your pill cam results! Keep us posted! Fingers crossed and butterflies in my tummy for you!

Star, regarding CT vs MRI, my GI said that CT gets a "general" picture of what's going on, but isn't super clear and can't see much detail. Apparently MRIs are much more detailed and clear. So, if you have the option of getting an MRI of your intestines, I would say go for it! I've had a liver MRI but not one of my intestines, that's one of the few tests that my GI has mentioned as a future possibility for me but not right now.

As for me, I'm having an off day, and as usual it's related to food! I made a huge pasta salad a few days ago and I have been eating the leftovers every day. But, and I've noticed this in the past too when I make pasta salad - the first couple of days of eating it I'm fine, but by the 3rd day or so my guts start hating it. I think it's because I don't seem to digest fats particularly well, and I like a lot of ranch dressing on any type of salad, and that stuff is full of fat and my guts can only handle so much of it before I pay for it. So I'm back to low-res (and low-fat), again, for now. And I already told my hubby that in the future we need to make much smaller pasta salads. We usually love making meals that give us days worth of leftovers, so that it's really easy to pack my lunch in the morning before work, but it's not worth it if my guts can't handle the same food 3 days in a row. It's funny, because low-res is so bland and repetitive, but apparently I need a little more variety in my diet!
 
I know! I've been checking all morning for a message from Allie. Ahhhhh!!!!

Cat, I am the same way with fat. That is one of the few things I've been able to pinpoint as a problem for me. But then the good fats (olive oil, avocado, nuts) don't seem to bother me like the other ones do. Go figure. I guess that's why they are more healthy?
 
They didn't call. :( I am going to try and find a way to call them myself tomorrow. I also have to figure out where I can go to fill my military RX's!

I have been the worst since I got here. No solid BM's since I left Germany. Not even with Tramadol! Its not fun being a perky sorority girl running to the bathroom every twenty minutes! I ended up drinking ensure this morning instead of trying to eat because of it. But I actually have an appetite now so I will eat some sort of pasta for lunch. :)

I'm sorry you are having an off day Cat! :(

Sunshine, that's so exciting! 21st Birthday is the best!!! :D
 
Allie, how frustrating that they didn't call! Maybe they got the math wrong with the time zones and will call later today? If not, I hope you can find a way to call them soon and also figure out where to get your prescriptions filled. As always, keep us posted!

May, I think you're on to something there. Now that I think about it, healthy fats don't seem to upset me either. I can do olive oil every day, and I can do mayo every day as well (I always buy the mayo that's made with olive oil which is probably why!). I don't do much avocado, but it's never seemed to cause a problem for me. As for nuts, peanut butter seems to be a little upsetting and for some reason it gives me awful heartburn! But almond butter is fine as long as it's very smooth. Sometimes almond butter can have little bits of nut in it here and there, and that does bother me. I don't do any actual nuts, pretty much just almond butter and almond milk. As creamy as it is and probably full of fat, almond milk has never bothered me either. Hm, interesting! Perhaps next time I make a pasta salad, I'll forgo the dressing and toss in some olive oil and throw some avocado in there instead.
 
Allie, ahhh i'm so upset that you didn't get your results today! I'm with everyone else on the fact that I've been checking every few minutes to see if you got some results back! I hope you get them soon!! it's not fair :( I hope that you start feeling better too. At least you can eat some yummy pasta :)

Cat, so sorry to hear you're not doing well today, that's terrible... :( I hope you get feeling a little better by the end of today. And yes, Friday when I have my appointment with my GI doctor I will find the results of the CT scan. Also, thanks for the early birthday wishes! :)

Mayflower, St. Augustine is so beautiful! I love it! I'm very excited about going there for the weekend and celebrating me and my boyfriend's birthdays! Should be a lot of fun! :)

So, I was going to not take any classes this semester because of my stomach issues, but I actually found 2 classes I can take ONLINE!!! :) So, I can get my AA finished at least by the end of the semester!! :) YAYY! Then, I'll move on for my BA but one step at a time haha. I really want to go to nursing school, but I need my stomach to get better first, because nursing school is very difficult to get through and requires like 12 hour clinicals like 4 days a week and stuff which I would not be able to do if my stomach is as bad as it is now. So i want to do nursing, but may change up the plan if my stomach isn't getting better. :/

Allie, what are you going to school for???
 
Sunshine, good for you for wanting to be a nurse! My husband's best friend just started taking nursing classes. Hubby's friend started out as a massage therapist, then became a certified nursing assistant, and is now training to be a nurse. So if your tummy isn't going to let you become a nurse right away, maybe you could build up to it like that?
 
Quick update on me. I got my CT scan results and they say everything looks normal. I expected as much since I'm still in early stages of testing. I have my colonoscopy and endoscopy on Tuesday. I finally had the conversation with my father about my health. We both cried. But at least he didn't call me a hypochondriac like my step-father.
I'm looking into applying for disability (as well as food stamps), but not having a diagnosis makes that difficult.
Also, I have to decide whether I am going back to school this semester.
I started eating again, but I think that may stop because I ran out of medication and can't afford any more.

Not sure how to cope with all this, but I don't really have a choice.
My father brought up the Fight Club; I am Jack's Colon... I feel like that.

Allie, I hope they call soon.

Cat, how do you determine what is and is not good for you? I haven't had a normal BM in two and a half months, so no matter what I eat, I can't taper off the D.

Hope everyone is coping better than I am.
dahlface
 
Dahlface, sorry to hear your CT results were normal. I wish you lots of luck with the scopes on Tuesday! Keep us posted, hoping for some results that will give you answers.

My father-in-law essentially called me a hypochondriac as well, at Easter in 2010. He had too much to drink and said some mean nasty things, and didn't let up even after I started crying. My husband didn't defend me but my mother-in-law did, which surprised me (my m-i-l and I aren't all that close). I did not go to see my in-laws for awhile after that incident, I just couldn't handle the stress of going through something like that again. When I did see my in-laws again, my f-i-l had totally changed his tune! My hubby made some joke about how I can't eat a lot of foods, and my f-i-l instantly jumped to my defense (!!!) and said that it must be really tough to have an illness like this and to not be able to eat what I want. I am pretty sure my m-i-l must have told him to be nice to me and that even though I'm undiagnosed, I am legitimately ill and suffering. At any rate, family members can change! I hope your stepfather comes around too and doesn't talk to you that way any longer.

With regards to what foods I can and can't eat, have you tried keeping a food diary? Start with an elimination diet, eating only a few foods - maybe start with the BRAT diet, which is bananas, rice, applesauce, and toast. If that goes well then slowly add in new foods one by one, and keep track of what foods affect you in what way. If you notice any patterns, like dairy or wheat, then you know to avoid those foods. For me, my triggers are dairy, red meat, anything fried, anything spicy (including mild spices like taco seasoning or garlic), nuts and seeds, popcorn (that one seems to be a trigger for most if not all Crohnies!). There's probably a few I'm forgetting but that's the majority. Fresh fruits and veggies seem to be a problem for a lot of us as well. And there's certain things I can eat when I'm not flaring that I cannot eat when I'm in a flare. So it'll take some trial and error, but hopefully you can start figuring out what your triggers are.

And as far as applying for disabilty, do a search on the forum as there have been a fair amount of threads on the subject. I remember reading a thread once that said that it's actually really difficult to get approved for disability even if you have confirmed Crohn's. That thread did suggest that it's much easier to get approved for disability if you apply for it for depression, rather than for Crohn's. I'm not sure why that is, and you should definitely do some research before you apply, and possibly even consult with a lawyer who deals with disability cases (my understanding is, you shouldn't have to pay the lawyer until you successfully get approved for disability).

I hope that helps somewhat! Good luck with everything and keep us posted on how the scopes go!
 
Cat, I don't think that peanuts and almonds are the same fat-wise. I think that fat from peanuts is less healthy than almonds. So that isn't surprising that it affects you adversely. I can do peanut butter (I buy the natural kind) in moderation.

Oh, Allie, I'm sorry they didn't call. Hopefully they will soon. We're all thinking of you.
 
I've learned today that my father has a colitis that flares up sometimes. No real specification on it other than a vague location and it's very severe. The more he talks (about pains, digestive issues, nerve issues), the more he sounds like me. It drives me insane, because I can't get medical history out of my parents. I have to tease it out of them. It's just so frustrating!
 
Finally got in touch with them! Of course they called while I was in the shower, so I had to call them on my computer. All they wanted to inform me about was that my GI has to be the one to look at the results. I'm disappointed! It seemed much more urgent than something like that...oh well, at least September will be here before we know it.

Sunshine, I'm going to school for my B.S. in Computer Science. :) That's awesome that you found online classes! I did that last semester from Germany..a full load actually, so I was really excited that I could do that while be with my husband and focus on my health. :)

Carrie, my parents are the same way! Now that you know that, maybe that can help you get some answers, or at least show the doctors that there is a connection! My dad's side of the family has all kinds of digestive issues...but no IBD that I know of. Of course, when I ask for a detailed history, I can never get it from him!

I hope everyone has a great day!
 
When my problems became public knowledge, my family started coughing up info. My mom has had all kinds of GI testing b/c of wicked constipation - she's even had that god awful barium enema test. Then my grandmother mentioned she has IBS-D. That was surprising - she never talks about such base bodily functions. I was glad to know I wasn't the only one.

Allie, that sucks, but you are right - We're over halfway through August already. That is a serious bummer, though.
 
Allie, so sorry to hear that you still didn't get your results and have to wait 2 more weeks! That really sucks. :(

With regards to getting info out of family members, my family doesn't have any digestive illnesses that I know of in anyone currently living (except for celiac in one branch of the extended family, but I've already tested negative for celiac in both blood test and upper endoscopy/biopsies). Nobody currently alive in my family has anything like IBS or IBD except for me. However, the one confirmed case of IBD that I know of in my family was in my great-grandfather, my paternal grandmother's father. My grandmother is still alive and I'm going to see her in a couple of weeks, so I think I'm going to ask her more about her father's UC. I know that he also had cancer and tuberculosis in addition to ulcerative colitis, but I don't know which one came first or if one triggered the other or what. I don't even know what kind of cancer he had. So I think I'm going to try to get some answers out of my grandmother about her father's health. My grandma is nearly 80, and her father died when she was about 19 I think (I'm not sure which illness killed him either!) so I don't know how much info she'll remember, but it's worth prying into. You guys have inspired me with all the talk of getting your family members to open up about their health issues. :)
 
Cat, I'm sorry your father in law said those things to you. But I'm glad they seem more supportive now. My inlaws don't even acknowledge my presence at their dinner table. My stepfather called me a liability and pretty much told me to get out of his life, so I guess that what I'm going to do. I don't need that stress anyway.
I'll try keeping a food diary, sounds like a good idea.
Pain is really bad today.
 
Allie, really sorry to hear that you haven't gotten your results back :( that's so upsetting... just only 2 more weeks or so though!

Sorry you all have family members that don't support you all :( that's so hard I'm sure! My dad was the same way for about 3 years and just like a couple weeks ago he's been understanding, but I still sometimes thinks he doesn't really. Like, he's kinda being fake about it. I don't know... it's upsetting. Totally understand where you guys are coming from!
 
How's everybody doing today? I've mostly recovered from my overindulgences with pasta salad.

Sunshine, you get your CT results today, right? And do you also get to decide on pill cam or DBE today? Let us know how that all goes!
 
Hello Cat! I'm doing alright today. :) Different Day, Same Problems lol. I'm glad you are feeling better!

Sunshine, fingers crossed the CT scan showed something!!

Speaking of family stuff, my Dad and I had a talk about me and my sister last night....I was telling him how siblings can both have IBD, and he got really interested in it. He said if my pill cam comes back normal and she is still having issues he wants us to go to the same GI. I think its an interesting idea! I mean, there really isn't much else they can test on me, unless they go a different route. I really just hope that my sister gets sorted out soon and she doesn't have to deal with this like we all do! :(
 
Allie, that sounds like a good idea for both you and your sister to go to the same GI - as long as it's a good GI who won't say you both have IBS! If you can find a good GI who will take both of you seriously, it does sound like a good idea. Is she your only sibling? I only have one sibling, my brother, and I don't think he has IBD but then again I don't know. He lives with me but we're not really close (and he'll be moving out soon). I know he does a lot of yoga and he smokes a lot of pot. Sometimes I wonder if those are forms of self-medication for an undiagnosed illness, but then again that could just be me worrying about something that isn't necessarily there, you know?

Anybody have fun plans for the weekend? I'm going to go to lunch and a parade on Sunday with a group of girls and it should be interesting! We all have illnesses/dietary restrictions. There'll be me, the undiagnosed chick who is trying to stick to mostly low-res foods, and my mom, who thinks she has celiac (I don't think she does and she's never so much as had the blood test, but that's a long story!) so she's gluten-free. And my best friend, who is a diagnosed crohnie but can eat a lot of stuff (she can do booze and spicy and fried stuff, all of which kills me), and also a new friend of ours, who is really sick - she has UC, fibro, RA, and several other autoimmune illnesses. I don't know this girl very well, she just moved here and I've only recently gotten acquainted with her, so I don't really know what she can & can't eat. In spite of all that though, we actually all decided on a restaurant already, we found a place that's apparently safe for all of us to eat at, so we can all eat together in spite of all our illnesses and specific dietary needs! So that should be fun. :)
 
Yeah, she is my only sibling. She hasn't really had issues in the past. I agree with the self-medicating...I know I'm doing it myself with the tramadol. When I don't take it, like this week, I'm sooo much worse. I have known a couple people, even on here, that self-medicate with pot. It makes you wonder!

This weekend I'm not doing much, just getting stuff done, including a cleaning day at the sorority house. There's an all Greek lock in going on from midnight to 6am Saturday night, and I really want to go but I don't know how long I will last!

My mother in law just sent me an email all about her sister, who has IBS. My mother in law doesn't quite understand how my condition isn't IBS, and she ignores me when I try and tell her it isn't IBS. She always says "oh, well my sister can't eat salads either!". So her email has all of her sisters prescriptions and how she manages. She takes antispasmotics for pain...we all know that has been tried! I just wish she wasn't so hard headed about the entire issue!
 
Allie, sounds like your m-i-l is well-meaning but kind of clueless. My m-i-l is much the same way. She didn't even realize that Crohn's could cause abdominal pain until I sent her a link about it. Perhaps your m-i-l would benefit from reading up on the differences herself? I did some googling and found a couple of links that clearly state the differences (the first one has a chart - as we all know, IBD doesn't always neatly check the boxes like this, but the chart appears pretty accurate).

http://ibdcrohns.about.com/cs/ibs/a/diffibsibd.htm
http://digestionexpert.com/2010/11/ibs-vs-ibd/

I hope you're feeling well enough to do the lock-in. I wasn't in a sorority when I was in college, but in high school I did go to a lock-in at the gymnastics center in my city. We did gymnastics (of course), ate pizza, watched movies, and got very little sleep. That's the only lock-in I ever went to, but it was a lot of fun! I assume a lot of alcohol is consumed in a sorority? (I was invited to join one when I was in college, but I was never a big drinker and these girls made it clear that drinking was their #1 priority, so I declined to join.) Are you able to drink at all, or is that totally out for you? I can't do any alcohol anymore, it's just not worth the pain and d it brings on. My crohnie friend can drink some alcohol, but she definitely pays for it if she overdoes it at all. Her limit is like 1 or maybe on a very good day 2 drinks.
 
Hey everyone, today my appointment with my GI doctor was not as expected. He's never talked to me the way he did today. He said everything was normal with the CT scan and blood work.
Then he started rambling on about how he isn't sure what to do next. I told him I would do any kind of testing or anything, and he said "no, apparently not, because you didn't do the antibiotics I wanted you to do a while back". I was thinking, that was ONE thing... I did SO many tests and things with him already, like that shouldn't be a big deal. And they were huge horse sized pills and he wanted me to take 3 of them 3 times a day.. made me so sick. So he said, I either need to go to the mayo clinic and let them run tests on me, or stay with him. He told me that my other 3 doctors I had before him were good doctors and that it was my fault basically that I didn't stay with them and get answers... Which isn't true at all. They all did 1 test and then gave up on me that's why I had to keep moving on to another doctor, and that's why this doctor is my 4th one. He's been awesome, but i'm just confused why he would act so weird. He just said that everything is coming back negative and that he's frustrated and he knows i'm frustrated because I'm the one that's sick. But, I just don't understand, and he made me cry while I was in the office with him. He really hurt my feelings. Like, how am I suppose to control how my stomach feels. Then he pressed on my stomach and he pressed down near under my left rib and I said that hurts. and he just said okay. I was like wow... okay... :( And he said if I stay with him, I will do antibiotics, and then another kind of antibiotics and then the pill cam. He even pushed back the pill cam even further... I'm so confused and was not happy when I left the doctors office. It really made me upset. I kinda feel like he's giving up on me a little. And he told me to stop researching things online and trying to help myself because he said online research won't help you feel better, just him. It's like, oh i'm sorry I've just been not feeling well for like 8 years and it's gotten terrible the last 3 so, sorry for trying to expand my knowledge and help myself. :( ughhhh. rough day. :(

SO, what do you all think about going to the Mayo Clinic or continue to see him???

Hope everyone is doing okay today!
 
Sunshine, leave that jerk and go to the Mayo clinic !!
That is where my daughter is treated and they are amazing!
You can either go online and request an appointment from their website ( www.mayoclinic.com ), call yourself to and ask for the central appointment line (1-904-953-2000), or have your GI give you a referral if your insurance requires it.
I don't know how far away you live from there, but its worth the drive trust me ! Their GI docs are very, very knowledgeable about Crohn's.
Best of luck and let me know if I can help you with it any :)
 
Crohn's Mom- Thank you so much for the information about the Mayo Clinic. I am calling my GI doctor's office on Monday and asking for a referral to go there as soon as possible! Also, my doctor was looking over some of my tests from the upper endoscopy and he said I had inflammation of the Duodenum. But he said that is probably from Celiac... But I did a Gluten free diet, and it was not good. made me ten times worse. So, not sure what he was thinking with that. I'm just upset because I wish my body would just show something already! But, I have faith in the Mayo Clinic, and I'm super glad that you think they are great doctors! :)

When he was looking at the CT scan results he said the only thing that showed up was that I had a fibroid in my uterus, and what looked like an ovarian cyst that had ruptured (?). Should I be concerned? I feel like getting the laproscopy to check for Endometriosis is likely now because of that result from the CT scan. Something is definitely up with my GI system though, but maybe I have endo as well... ahhh who knows haha. so complicating! :ywow:
 
Hiya Sunshine

sorry you're feeling so rough, in fact, to all of you, hope you're ok.
I just wanted to say about the endos, yeah get it checked out.
This is what I suffered with for donkey's years! I had a fibroadenoma on my ovary and had a lap to see what was going on. I had a hysterectomy in the end, my choice.
If you look in the forumwiki, I have put something in there about the correllation between endometriosis and Crohn's, apparantly endometriosis can mimic Crohn's.
My advice would be to get yourself a gynae and get it checked out asap.
good luck
xxx
 
I am getting really wound up about monday- not so much the new GI since will have to wait and see his attitude- but my upper scope & stool results :( I am going to go mad if either or both are not back!

I just hate this damn merry-go-round and want off! Despite telling myself not to, I get my hopes up every time, and they are always dissapointed.

Plus I had a night attack again (second in a week), pain woke me up around 6am and I don't know how my knees didn't buckle as I walked to the toilet it was so bad!
 
Cat, that's a great idea with emailing her the differences! I completely agree, she only means the best, but she is very hard-headed at the same time. As for the sorority, we aren't like that at all! Yeah, with every college campus there is some drinking, but it isn't as big of a deal here. I go to an engineering school, so we are a bunch of nerds. :p I can drink, but I can't go too far. On Monday I had about four drinks at a baseball game and the next morning I was in so much pain! I haven't been well since, come to think of it. :/

Sunshine, I'm sorry you had bad luck with your GI. He seems just as frustrated as you. :( I know you seem down with how it went, but I personally wouldn't change doctors at this point. He seems concerned, and knows somethings wrong. A lot of GI's would have told you IBS by now! I also have had bad luck with doctors, and ended up changing, and it really hurt me in the end. The reason I'm at where I'm at now if because I stuck by my GI month after month...with complicated cases like ours it seems like time and patience is key! And because he is still going to do the pill cam, so I think he isn't completely giving up on you. As for the CT scan, I would definitely get the endo checked out! I have had a ruptured cyst, and they hurt like hell. I'm surprised they said it was possible and you didn't feel it! I would go to the OBGYN to get that checked out.

Star, good luck on Monday! I really hope everything works out!

As for me, I'm taking a "spoon day" today. It turns out the lock-in was last night, and I was told the wrong date, so I missed it! I'm not too upset, because I would have never made it. I'm getting really tired of being this sick with no help, but I know you guys understand!
 
Thanks allie (((hugs))). But i'd bet my life savings all tests will be normal and I will get the IBS bull-crap. I am that confident :( And I have no reason to think otherwise right now.
 
Astra, thanks for all the info! I'll check out your info on the forum! :) Really appreciate it

Allie, I want to keep my GI doctor that I have, but I'm also kinda thinking not anyone can just walk into the mayo clinic, so I'm thinking, if I have the chance and consent to, maybe I should check that option out as well. Hopefully my GI will let him help me and have mayo clinic help me, but I'm not sure how he feels about that. He seems like he only wants one of the options for me, not both... and I trust my GI completely, just don't think he shouldn't of acted the way he did yesterday at the appointment. Maybe he just had a rough day, and got frustrated because I'm not an easy patient to fix. :( I'm going to send the CT scan results to my OBGYN so she can see the ovarian cysts and such and see when I should get the Endo checked.
 
Happy birthday sunshine,

Sorry to hear about your pain though, it's never good but even more so on special days! My birthday goal was just to get through a dinner successfully and share a glass of wine with my girlfriend!

A little goal but a goal none the less! Sounds crazy but it's your birthday so you're allowed to indulge for a day even if it means more pain tomorrow! That was my theory and I did indeed pay the price the following day but after a year of limbo 'twas worth it!

Hope you're having the best one you can and praying for you that tomorrow's a pain free day!
 
Happy birthday Sunshine!! Sorry to hear your tummy isn't cooperating, I hope you can still have some fun in spite of that. With regard to your doctor, if I were you, I'd jump at the chance to go to Mayo Clinic. The closest one to here is the one in Minnesota, which is a fairly long drive (I'm not sure exactly where in MN it is, I do know that it's about a 4 hour drive to get to Minneapolis/St. Paul from where I live). So that's not really realistic for me. But if it were a little closer, and if my insurance covered it and I got a referral and all that, I'd definitely go to Mayo! Just my two cents. :)

Star, wishing you tons of luck for tomorrow! Surely your test results are back by now, it's been a month (or longer?), right? I can't imagine that they wouldn't be back. I hope the new GI is stellar and that he and your Rheumy can work together to get you some answers! Fingers crossed, keep us posted! Will be thinking of you tomorrow and am thinking happy thoughts for you now!

Allie, good to hear that your sorority/college isn't big on drinking. It seems like here in WI everybody drinks a ton! Some joke that it's our state sport. ;) Here in Madison it's particularly bad, the university here is consistently ranked among the top party schools in the nation. Once, a few years ago, I was driving a friend home from the airport, and we had to drive through the campus late at night to get back. My friend made some comment about how drunk college students just cross the street when and where they feel like it, regardless of traffic or crosswalks. Just as he said that, a drunk college kid stepped into the road and I had to slam on the brakes to avoid hitting him! Also, on days when there's a WI Badger football home game, I've seen people start hitting the bars and beer gardens at 9 AM - even if the football game is at 7 PM. It's crazy! So that's the kind of stuff we're used to around here, lots of drinking everywhere by pretty much everyone. It makes me feel left out - I've never been a big drinker to begin with, but now that I'm ill it seems like even a very small amount of booze makes me really ill the next day. Not worth it!
 
Crag, thank you for the birthday wishes! I'm definitely going to enjoy my birthday the best I can! :)

Cat, that stinks that the mayo clinic is so far from you. It's only 2 hours from where I live in Florida. My dad is getting worried about me because I am down to 100 pounds. It's weird, Im not trying to lose weight. I never lost weight before until recently. I used to be 112. I wish my doctor would let me keep him and go to mayo clinic but he wants me to pick one. Ridiculous. Mayo clinic can do all tests that my dr can do plus many others that only mayo clinic has, so I'm thinking that's a good choice. I wonder how long I'll be there for. Do you know how long people usually stay? And I need to get the laproscopy done to check for endo since the CT scan showed fibroids and ovarian cyst.
 
:birthday2:

Happy Birthday Sunshine!
I hope you can enjoy your day even with the tummy issues.

As far as how long people stay at Mayo :
They won't keep you there. The first day you will meet your doctor, he will give you his assessment on what he thinks, order appropriate tests, etc. If he thinks you need to see another type of specialist (a gyn for example) he will tell you that too. All of Gab's doctors are at the Mayo now, mainly because she has very aggressive CD and it's best to keep everyone on the same page. Also, all of her records are easily accessible through their computer system right there. All of your testing will be done right there; they have 3 different buildings, but most of what you will need will all be in the same one, the Davis building. It is so nice just riding an elevator up and down to each appointment and diff specialist instead of trekking it all over the place. You will be amazed at the organization they have, and also everyone is so very professional, helpful and most important...KIND ! You probably won't even care that you your present GI won't see you anymore after you go there. It may seem a bit overwhelming at first when you go because they do move very quickly, but after things get settled and they figure out what is wrong, then the appts slow down. The first few times we went we had so many diff appts back to back that we just booked a hotel room and stayed. There are a lot of nice and reasonably priced hotels in the area, with less than a 10 min drive.
Personally, I think that if you have the option of going there you should jump on it. Like you said yourself, not everyone gets the opportunity to be treated there, and it's about time you get some real help so you can live and enjoy your young precious life, instead of constantly thinking about health issues every day. :)
Best of luck in your decisions.
Oh and one more thing...have you tried adding some Boost, or Ensure drinks to your diet for some extra calories ?? Or...eat more cake! LOL
hugs,
~T~

edit: just curious...is your current GI with Borland Groover? Sometimes the doctors won't keep you as a current patient if you go outside of their "group". It's like an unspoken competition. When we first went to Mayo our GI asked if Gab's doctor had a problem with us coming there because of their competitiveness, and he was quite surprised when I told him no. But, we did see another GI specialist up there in Jax before the Mayo clinic and he was adamant that he could treat her better than Mayo. It's all such a game with the insurance companies and between the hospitals and such...kind of sad really.
 
Star, I hope it is better than think it will turn out! I understand though, I am completely expecting this pill cam to come back normal just because of my history, even though with these awful symptoms something should show up! Just try and take it day by and day and hopefully something will change real soon!

Sunshine, HAPPY BIRTHDAY!!!! I hope it has been fabulous even though you aren't feeling too well! I understand with the whole mayo clinic thing though. I have heard great things about them! A hospital right near here has opened up a whole new digestive disease center in the past year, and I have been thinking about getting an appointment there. The thing is, with my past with all these normal test results, I'm afraid they will will pass me off or ignore me! So I am trying to stick with someone who doesn't think that about me.

Cat, that's crazy with the drinking in your town! I would feel kind of left out though too, even though I've never been a big drinker. The only reason I drink the little I do is because German beer is so good. :p
 
Crohn's Mom, I'm SOOO pleased to hear that the Mayo clinic doctors are kind!! :) It's always nice to have people be kind to you when you're not feeling well. I'm feeling a lot better about choosing the mayo clinic now! I really think that they will be able to help figure out what's going on. So they have all different types of specialists there? That's awesome. So, you don't have to go anywhere for anything, they just send you to a different specialist if they think it's gyn related for example. what great news!

Today at St. Augustine was SOO much fun! Tummy wasn't doing well, but the pain faded through out the day, but then I ate italian food for dinner, so I don't know how well I'll be able to sleep... But you know what, it's my birthday! I wanted to eat my favorite food! lol I'll pay for it later probably! And I did eat a piece of cake! I'm sure that will digest fine haha! :)

My doctor didn't even seem concerned about my weight, I don't know if he even looked at what the nurse wrote down. lol. but I think I'm going to by some ensure. I've had it before, and it's not too bad actually! :) And i'm not sure if my doctor is with Barland Groover. I don't think so at least. But that's kinda the attitude that my GI doctor has right now, but I think he's getting frustrated because he's realizing that it's more difficult than he's used to dealing with maybe. I don't know, not really sure what's going through his head. I was really upset when he told me to stop researching and talking to people online about it, because honestly being on this forum has really helped me emotionally. Because hearing all negatives about a diagnosis is very draining. When he said that to me, I looked at him like, if you only knew how much help they all are, and how it's nice to know that you're not alone... but he wouldn't know about that, because his tummy is just fine!

Allie, thanks so much for the birthday wishes!! :) I think that you should try to get into the hospital that you're talking about. I think that they will take you, because I have all normal tests except for some duodenum inflammation but that's it, and I'm getting a recommendation letter from my doctor to mayo clinic. So, I think you have a big shot too. :) I hope you get your pill cam results back soon!!!! It stinks that you've had to wait for so long.
 
Well still no diagnosis :( Biopsies from upper endo were normal, and stool test to check pancreatic function still not back. I can't tell you how much I was hoping CD would show or better yet, cealic since that would be a simple fix for a cure!

The new GI was much nicer and alot more understanding. Apparently I should have gone in on a new patient appointment instead of the one I had, so we both had the time we needed, so another black mark against complaints service (we are in the process of complaining to the proper "body" about them anyway).

He said on balance with normal test results it does look like IBS and I've had pretty much every test. He understood though that I was "brassed off (translation: v annoyed) at being ill with no reason why". He seemed keen that I do the special diet referral (more on that shortly). Seemed to hint if that didn't work he would look at things more closely.

I said I felt that tests were going in more of a Rheumy direction now, but that I still needed to see a GI at the same time. So I see him again in December and I can contact his secretary in the meantime if I need to. I think he understood and I got exactly what I wanted after all- not a dx though.

Well, the diet referral. Already knew it was specialist advice (FODMAP diet) so couldn't be done locally, but at a London Hospital (50mins train to reach London from my very nearby station and then 10 on tube). So I was against it because I didn't think it would work (last time ate out of my comfort zone ended up in A&E) and the financial and practical difficulties. So it happens I got the letter to arrange the appointment at the weekend. I thought since 2 GI's wanted me to do this, I should ring up and explain my problems with it, get their advice Turns out it is an initial 10 MINUTE TELEPHONE appointment! Jeez, if my ex-GI had told me that I would have been all for it!, happy to take first step at least etc.
 
Pred side effects

Hello folks,

Here on behalf of my Husband.

Full back story here:

crohnsforum.com/showthread.php?t=12620

(he's been undiagnosed since this started in July 2009)

Having been thrown away by his Gastro-specialist as just another case of IBS and gastritus. Last week Lewis convinced his GP to put him on a course of Steriods.

He started them on Friday, 6 tablets a day, total of 30mg (Pred), he will need to taylor this down after about a week or so and visit his GP again.

At the moment he is on Amytriptalene (low dose Anti-depressant for IBS) Lansprazole (Acid reduction) Mebeverine (anti-spasmodic) Domperidone (anti-nausea) Fibre-sure (Fibre drink) and Dulco-ease (stool softerner) - all every day.

Yesterday he started experiencing muscle ache all over and severe tiredness/weakness. He is the same again today and was sick this morning so sent home from work. :shifty-t:

I know a few of you have been given Pred, do these side effects sound normal and are the likely to fade away? :sign0085:

Thanks guys.
 
Hi Boosh Baby, welcome. There was just recently a thread asking similar questions about prednisone. Have a look:
http://www.crohnsforum.com/showthread.php?t=21475
With regard to some of the other things, you mentioned he takes a fiber drink daily. If he does have some form of IBD (Crohn's or Colitis), fiber can actually do more harm than good. And finally, may I just say that it is great to see a spouse of an undiagnosed person on here! We see a few spouses around the forum but I believe you're the first spouse I've seen in the Undiagnosed Club. I know it must be really difficult for you to try to care for him, not knowing exactly what's wrong. Hang in there, and I hope he can get some answers and proper treatment soon.

Star, I'm so glad to hear that the new GI seems kind and understanding! That's very promising and I hope he continues to be good. :D Sorry to hear that some of the test results STILL aren't back though, how frustrating! At the very least, you can cross celiac off the list of suspects, right? I was satisfied to cross that one off myself (I live on breads and pasta, especially in a flare). And that's excellent about you being able to have a phone appointment, that's excellent that you don't have to travel all that distance! I hope they're able to help you with diet suggestions - as long as they don't say high fiber, right? ;) What's next for you after the dietary appointment? You see your Rheumy next month, right? I certainly hope those test results are all back by that time!

Sunshine, it definitely sounds like Mayo clinic is the place to go! If your current GI wasn't even concerned about your unintentional weight loss, that sounds to me like he's just given up. My GI isn't the best, but he is always concerned when I've lost even something a small amount like 5 pounds. My weight steadily dropped for the first year of my illness, in spite of me trying my hardest to gain my weight back (on the days that I could eat, I could literally eat a big bag of potato chips every day and still was losing weight), and my GI was always concerned when I'd come in for an appointment and I had lost another few pounds. It's not normal (and it's not IBS) to lose weight unintentionally like that. Oh, and definitely get yourself some Ensure! It's got calories which will help you put some weight back on, and lots of nutrients. It's full of sugar too, but that's not all bad. If you're having a hard time eating, your blood sugar is probably a little low anyway so Ensure will help with that too. I have a chocolate Ensure for breakfast every morning since I have a hard time eating solid foods in the mornings.

Allie, if your insurance covers it, definitely try to get an appointment at the gastro hospital you mentioned! You're only in the US for a few months, right? Why not make the most of it and go to the best place you can while you're here! With all your symptoms I would think they'd have to take you seriously. You've had some unintentional weight loss too, right? And the pain and the warm spot you mentioned, they surely can't write those symptoms off as being IBS. That's serious stuff!

As for me, I'm doing so-so today. I sometimes get a bit depressed and wonder if I'm really in remission or not. Today's one of those days. I still have diarrhea, but not nearly as often. We're talking maybe once or twice per day, a few days per week. I still pass mucus about once per week too. I am really not sure what remission is or if this is normal for remission, or if I'm not quite there yet or what. I'm sure it's different for everyone - I've seen some threads where people talk about remission, and it sounds like some still have diarrhea but others don't, some can eat what they want but others can't. I may be one of the ones who still has d and has to avoid trigger foods. Or maybe I'm not in remission yet. I don't know. I feel good for the most part, I really do. I'm just depressed today. Part of the depression I think is that hubby's been letting me down a little bit, again. We've been not doing well financially and he's been looking for a job. But, he's been looking for a GOOD job in his field (art and animation) and there's not many jobs like that out there, and as a result he's applied for some jobs but has only had one interview (and that was for a one-time project rather than a full-time job). I have been asking him to get ANY job, at a store or whatever, just so that we can make ends meet and start paying off some debt, and that he can keep looking for a good job while he's working whatever paying job he can get. I don't know if it's his pride or what, but he won't do that. So we're still struggling and he's still making very little money (he does freelance work, currently the only work he has is teaching art classes a couple hours per week). Soooo, yeah. Confused about remission and stressed about finances, and a little depressed today. I'm hanging in there though. I hope everyone else is doing okay!
 
Yes I see Rheumy in 3 weeks, diet consult the day after and Pain Management in a month's time.

I know it's good to cross cealiac off the list, but despite loving Cheese Nips and Pizza Hut (when I have an appetite) I was really hoping that was the problem. Since a change of diet would have cured me :( And I could then live my life as normal and do all the things I wanted to do before I got sick. Actually have a life instead of exisiting from day to day like I am now. I hate the direction Rheumy testing is going in and I am very scared. I mean, with something like CD there are many treatments and you can go into remission. If I had a blood disease how the heck could I get over that you know?

At this point I would honestly be glad to have CD, it is beginning to look like my digestive problems may be caused as an off shoot of a much bigger illness.
 
In the middle of my prep for my colonoscopy and endoscopy tomorrow. Doctor called to say that my blood and stool tests came back normal. Yeesh. Hoping something shows!
 
Cat, yeah I don't know why he over looked my weight dropping, but maybe he didn't think that it was a big deal to him. but I was shocked! lol. I haven't had weight loss happening until recently like 1 month ago, so I don't know if I'll keep losing weight or if it's just a weird thing going on. Today was so embarrassing for me! My boyfriend and I went to eat lunch and as we were driving back "all of a sudden" with NO WORRIES as always... I had to yell to pull over so i could use the restroom. I ended up going in this tiny little place, and the bathroom was SO tiny and had NO AC! gosh, was I feeling bad :( Glad that's over with for sure!
 
So really weird thing happened today. Earlier I was watching tv and saw a crohns commercial which was very weird considering I've NEVER seen any type of stomach problem commercial. Then next when I got home I got an envelope in the mail and in the outside of it it said "open this for information that may make a difference". So, opened it up and it had 7 big really fancy cards that each said something about what I say to myself everyday. For example, "Is sitting near the restroom still a part of your routine?"... And other sayings like that. And it ended up being a pamphlet on crohns disease. I've never gotten anything in the mail like that. It was just. Crazy that I saw 2 different things for crohns that I've never seen before in my life. Coincidence much? Lol kinda creepy! Maybe it means something...

Just thought I'd share that with you all! :)

By the way... Gastritis STINKS!! :(
 
Sunshine, not to discount any deeper meaning behind anything, but the thing you got in the mail was probably due to all your researching Crohns on the Internet. Seriously, I guess it's spyware that various websites use, but in the past I have had pregnancy scares, and as soon as I start looking at those types of websites I start getting all kinds of baby stuff in the mail. Kind of creepy I think, the way the Internet tracks your every move.
Cannot explain the commercial. That is probably just a bizarre coincidence. I have noticed ads in magazines for Crohns meds since this all started for me. It could also be that you're more aware of that sort of thing of late. Again with the pregnancy thing, whenever I'm pregnant it seems like everyone is, but I thinks it's more likely I'm just paying more attention. But I have never seen a tv commercial for Crohns.
 
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Yeah you're probably right I just thought it was crazy! Haha the tv commercial was a great one. It had a lady sitting in a restaurant saying "what if I eat the wrong thing"... "what if I end the night early because of my upset stomach", and more "what ifs". They gave a website after too. I think it was. Knowcrohns.com/tv
 
Hey Everyone! I feel like I missed so much. My computer has been on the fritz. :/

Star, I'm sorry you seem disappointed in your appointment. It sounds like the GI has your best interest in mind! I know hearing IBS sucks though. Hopefully your Rheumy can figure this all out!

I agree with you guys, I should try and get an appointment at the digestive disease center at Saint Joseph's. I'm just waiting for those stupid pill cam results at this point! Once I have those results I will probably be going over there whether the pill cam comes back normal or not.

Boosh Baby, Welcome to the Club! I personally think that's great that his GP is trying a treatment instead of tons of tests. I personally don't have experience with Pred. Keep us posted on how he is doing!

Sunshine, that commercial is ridiculous! I saw it the other day and it made my jaw drop. I can't see Crohn's becoming the next "popular illness", like breast cancer or Autism... how can you make Crohn's cute and likable? :p

As for me, I'm really not doing good. I know its because I'm trying to do too much. I have gone right back into doing everything like I did before I got sick. My husband keeps telling me I have to back off...but it is really hard. I feel like I felt whenever I go on vacation with my husband...but this has no ending!
 
Well I had my colon/endoscopies today. Now that I'm thinking more clearly I can update. My GI saw some indicators of crohn's in my terminal ileum. He ordered another blood test and I should be getting a call tomorrow with a Pill Cam date.
I was really hoping something showed, but now that it has I'm afraid. But I am glad for the care I seem to be getting so far. Hopefully I will even get treatment soon, the pain is getting worse, but I am not taking any drugs yet.
Trying to live by the spoon theory now.
Hope everyone is doing okay and that we all get diagnosed soon!
(thanks to this forum, I already knew what a Pill Cam was, so that I didn't have to pay too close attention with my fuzzy brain as my doc was explaining it)
 
That's great that your colonoscopy showed an issue! I'm sorry it might be crohn's though. :( Hopefully the pill cam will show in detail whats going on so that you can get on the right treatment!
 
WOW Dahlface, that's great that your doctor actually KNOWS what's going on basically!! You're very lucky to know and I'm glad that you are going to get treatment soon! :) I know you are so afraid right now, but finding what is wrong is half the battle. Just think, you will be feeling much better soon. And we are all here for you through it all. :)
 
Allie, I'm glad to hear that you want to go to that hospital you're talking about. I really hope you feel better, sorry that it's been rough for you. I wish we all lived closer so we could all have a Undiagnosed Club in person! We could all hangout, and if we don't feel well, we ALL UNDERSTAND! :) wouldn't that be wonderful.
 
Dahlface, that's great that you're getting near some answers. I know it's scary to think that you could have Crohn's, but at least if you know what you're dealing with then you can treat it and feel better! And with the forum you've already got a support system and advice/info at your disposal, so hopefully it's not too scary. A few of us have already had pill cams so feel free to ask if you have any questions about it - it's a pretty easy test, although you may (or may not) have to do prep beforehand.

Sunshine, I haven't seen that particular commercial (I don't watch a lot of regular TV - we don't have cable and mostly watch shows on Hulu or Netflix). I do recall seeing a commercial a few years back for a Crohn's med (might have been Humira?) and it was soooo vague. This was before I became ill, and I really didn't know much about Crohn's at all. I had heard of it but didn't know what the symptoms were or anything like that. So the actors in this commercial said things like, "The pain is bad" or "I had to miss my friend's wedding". But they didn't say where the pain was or what kind of pain other than "bad", and they didn't say why they had to miss the wedding! And of course they said nothing at all about being stuck in the bathroom all the time or any mention of the "gross" symptoms. To top it all off, the people in the commercial were obviously actors. The woman saying she had to miss the wedding was in full makeup and looked very nice - a real Crohnie who had to miss a wedding would have been in something like sweatpants and definitely no makeup!

Allie, as hard as it is, it sounds like you need to slow down a little bit! You can't be superwoman in a flare, it's just not possible. Do what needs to be done, like your schoolwork. Other stuff, like sorority stuff, might have to be delegated out so that you can concentrate on your health a bit more. I know, it's super difficult to make yourself not do everything, especially if there's a lot of stuff that seems like it needs to be done. When I flare, the house gets to be a mess and the laundry doesn't get done and it drives me crazy!! But I have to force myself to rest instead and get better. Stuff like that will wait, it'll be there for you whenever you're feeling well enough to tackle it! Sorority stuff was fine without you while you were in Germany, and it'll be fine if you can't handle it all now as well. Same for whatever other obligations besides school (and even that will wait if you are really feeling horrible). Take a breather, slow down, let yourself rest and heal as much as you can. Believe me, I've been the same way in a flare, trying to do too much, and you'll only make yourself feel worse and more run-down. So, relax! :)

Star, I hope you don't have some other illness on top of or causing your bowel issues. As bad as Crohn's is, I know there's worse things out there (I remember our discussion about Lupus a while back, that one sounds horrible). I hope your Rheumy's blood testing kick ends up ruling out the scary ones and points you back towards less scary (although still obviously not wonderful) stuff like IBD. And, yum! You mentioned Pizza Hut which got my mouth watering. Hubby's making homemade pizza for us tonight (I'm lactose intolerant, but we use goat cheese for my pizza which doesn't make me ill the way that cow's dairy does). Drool! I can't wait! I hope you're able to have some pizza soon too, it's a rare treat for me since the grease and the sauce sometimes affect either my guts and/or my acid reflux, so I don't do it very often. (Plus the fact that goat cheese is really expensive!) Hope you're doing okay today!

May, how are you doing today? How's anybody I may have missed? Did you guys feel that earthquake yesterday? I felt it here, it was crazy! I was at work on the 3rd floor, and felt the building shake for maybe 15 or 20 seconds. I didn't think that was possible to feel an earthquake from so far away but the local news confirmed that yes, we did feel it here in WI. And now there's a hurricane headed towards the east coast as well?? For anybody who's near the coast (Allie? May?), I hope you're able to avoid the hurricane! Sounds like the east coast is just taking a battering lately!
 
My husband felt it. I've had better days, truthfully. I had some loose bowels this morning and then after that, just general abdominal uneasiness. I actually have had cramps with D a couple of times here in the last few days. I hope that isn't a sign of things to come.

Looks like we're going to be spared the hurricane's wrath this time. But we'll still probably get some nasty wind and rain bands. I think the west side is the worst? I can't ever remember. But if it hit NYC, that would be insane!!

My husband felt the earthquake, but I didn't. He was sitting in his office and I was walking around the house. Don't know if that had anything to do with it. Crazy.

Hope everyone is feeling well soon.
 
Thanks guys for the kind words. I completely agree, I need to slow down. I'm dropping everything not required for the rest of the week. There is still a ton of stuff that I will have to do because of sorority recruitment (they would kill me if I didn't show up to events) and class. On my other thread (I was so frustrated last night...I needed to vent!) they are urging me to go to the ER...I really don't know what to do. I'm hoping rest, ensure, and lots of Gatorade will get me to feeling better, on top of the tramadol. You guys know just as well as I do that ER docs really don't take us seriously...my husband thinks I should just tell them I have crohns so that I don't get judged. I don't think I could fib like that since I don't have the proper diagnosis yet!

Sunshine, it would be awesome if we all lived in the same area. I know I am SO much closer than before (we are only a state away from each other)! It would be cool if some point down the road we could all meet at an IBD event or something. :)

The earthquake yesterday was crazy! I was on the phone with my husband in Target when it hit. I didn't feel much, because I didn't even notice. And now the hurricane...what a week! It looks like it will miss us here in Georgia though. Thank goodness! I wouldn't mind if the temps went down though...my cars AC is out (my dad really didn't keep my car in check), so whenever I drive I'm sweating like crazy. YUCK! I'm trying to stay out of my car to keep my hydration as best as possible.
 
Allie, I'm horridly sick today, and I've failed multiple times at responding to your other post because of it (and everyone else's posts! sorry! ugh)

1. go to the ER
2. tell them you have Crohn's
3. tell them what you think is wrong
4. tell them you need fluids


I don't take my tramadol every single day anymore which means spending most of every day in pain, but the tramadol works better for when I absolutely can't handle it. (I live on a 6-8 daily depending on pain killers and stuff)

I wish a couple of you lived near me!

I feel like I'm going to die today. I can deal with most things, but I think my nausea has to be the.worst.thing.ever. Especially being in work.

also Allie, set some boundaries with the Sorority. You can't do everything you did last year. You've been away for a year and you're sick! Maybe it'll help if you try to put it in terms of how they have felt in the past with strep, the flu, etc. "so remember how absolutely shitty you felt and how you couldn't move? it's like that but 20 times worse"
 
Allie, I think we should all try to meet up someday!! That'd be so great! Can't believe you are only a state away!

Carrie, sorry you are feeling Sooo bad today! :( I hope the nausea settles down too. :(
 
If I'm not better by Friday morning, I'm going to the ER. I really don't want to just say straight up Crohn's, but at this point I don't know what else to do! If my GI hadn't just left me hanging like this I wouldn't be in this weird limbo. If I do end up going, I'm wondering what the difference will be from the German hospital. They admitted me within a matter of minutes..I know that wont happen with the American ER. A couple weeks ago Samantha (25Times) went to the ER and they just gave her a bowel prep and sent her on her way! And she has a diagnosis!

If I did end up getting admitted, I would miss recruitment entirely AND a ton of class. :( I just can't even imagine that happening right now. That's why I dropped everything to focus on my health...why the heck did doctors just let me suffer for months and months, when that would have been the best time to get tests, treatment, and get everything worked out? I had no obligations, NOTHING. Now focusing on my health makes it where I will miss critical events and have lots of catching up to do in my schoolwork. I could even get "fired" from my capstone team to where I don't graduate. And our first meeting has to be by Friday! There is seriously no time to be sick right now.

I agree with explaining to my sisters. My husband even suggested pulling out spoons just like the spoon theory. :) I love helping them though, it makes me emotionally happy and satisfied. Its going to be a struggle getting into a routine with balancing this nasty chronic illness and being a busy college student.
 
I would also like to add that I'm watching Mystery Diagnosis...and its just making me frustrated! So many people seem to get turned away for so long because of stupid normal test results. I just can't wait to have my happy ending. I know all of you cannot wait for that day too.
 
A real life meeting of the Undiagnosed Club? That would be awesome if we weren't all so far away from each other. If you all want to road trip here, I propose we could meet in Kohler, Wisconsin. The birthplace of Kohler toilets! Seriously, they even have a toilet museum there. :D What better place for a bunch of probably-Crohnies to get together!

Allie, I know just what you mean, it's so hard to balance real life with this stupid illness. Last year, before Entocort when my illness was out of control, I had a few bad flares in a row and I had to call in sick to work a lot. I didn't have Family Medical Leave at the time and I was afraid I was going to lose my job. My husband only does freelance work right now (he's been applying for "real" jobs lately) so it was all on my shoulders to stay employed so that we could pay our bills! I had nightmares about losing my job, losing our house, and becoming homeless. I do not think I could handle being homeless and having this illness, honestly I would probably kill myself if it came down to that. It was a really, really rough time. But I had to call in sick - there was just no way that I was going to be able to work and deal with a flare, so I chose to heal and get myself out of the flare and then I could get back to work. It sounds like your situation is similar, you're afraid that you're not going to graduate and then you won't have your degree and what will you do? I'm telling you, get through the flare first, the other stuff can come later. If you don't graduate, what's the worst thing that will happen? You won't become homeless, you will still have your hubby working to support you, you can still go to school online or take time later on to finish your classes - right? I know it's panic-inducing to think your illness is forcing you to possibly make major life changes, but you have to take care of your health first. You can always do the other, less-important stuff later. And I'm telling you, sorority stuff and even classes are less important than your health. Take care of yourself and the rest will fall into place later. Take it from me - I can't remember the last time I called in sick to work! :)
 
Afraid balancing life with the illness is easy for me, as I am too ill to have a life, so just the illness to deal with!

Allie, I hope you feel better soon (((hugs))) :soledance: You could tell the ER staff it is looking like CD, when I went I said there was some dispute over what I had, but asked them to keep an open mind, it seemed to work.

Cat, I hope it isn't anything else either. But I think tissue biopsies are the next stage. Frankly as long as I am numb/sleepy/asleep during and don't require and laxatives before, I don't care what they do to me.
 
Hey everyone, my name is Kylee and I'm a 22 year old college student studying music education. I'm thinking that Chron's is what I have... the symptoms are there--soft stool, blood in stool, abdominal cramps. My brother has Chron's, although he's three years younger. He was a plump boy, but all of a sudden had a huge weight loss, which is how we found out. I have always been skinny, though. I went to a physician on campus (who happens to have colitis) and I'm being referred to a specialist for a colonoscopy... yay. The outlook doesn't look good, and to be honest I'm flipping out. The fact that I could have this disease, and most likely do, is really earth-shattering to me. Because my doctor visits have all happened in the past two weeks I'm still in the "omg my life is going to end" mode. And unfortunately the sources online are just telling me it's going to get worse until I die.

Can I have any positive encouragement... anything positive so I can stop having a nervous breakdown? I'm really stressing out about the bills (because I don't have insurance), and I just think that if I am formerly diagnosed I will just collapse.
 
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Hello everyone,

I have been reading for several weeks and finally decided to register and ask you all a question: How do you deal with the pain and get enough sleep? I haven't had a decent sleep since June and I work over 40 hours per week. I can't take codeine and be able to do my job, but it's getting hard to hold it together on 4 hours of sleep per night. I always feel like someone's doing surgery on me without anaesthetic while I try to sleep.

--
Colleeny
 
Allie, gosh I totally understand where you are coming from. It's so difficult trying to be a college student and be so sick :( I hate this. And it makes me really upset to know that there are so many people that are sick and no one knows what's wrong. The ER doctors usually aren't any help and it is very frustrating. Why don't they take any of us seriously?? I hope your GI doctor contacts you soon, it's ridiculous how long he's made you wait when he knows how bad of shape your in. :( I'm praying for you.

Ent, welcome to the club! There's a lot of support and kind words in this group of people! I am sorry you're not feeling well :( I'm a college student too and I totally agree it's so hard to deal with school and tummy issues. Honestly this forum has been the best help for me. Because as we all know, having people not know what's wrong is emotionally draining and it's hard to think positive sometimes. But venting and talking with people in this forum really makes you feel more comfortable because we all understand. It's a great support system. Everyone is always there for each other. :) I hope that makes you feel a little better.

Colleny, welcome! :) and as far as sleep goes it's definitely a challenge sometimes. I have gastritis so a lot of times that keeps me up. I just usually sit pillows up on my bed and sit up straight and eventually I just fall asleep. I've been up till 630 in the morning before because of tummy issues. So I totally understand. Do you get nauseous? Sometimes I take Emetrol which is an over the counter nausea syrup and sometimes it helps settle my stomach and I can relax better to fall asleep. Hope you feel better. We are all here for everyone if you ever want to vent or talk. :)
 
Hi Entwined, welcome! I know it's really scary to think you could have an illness like this. Try not to focus on some of the horror stories you've read - there are a lot of success stories as well. I consider myself to be something of a success story. I'm near or in remission right now and I feel great! I still have a little diarrhea now and then but that's about it. I have my strength back and I feel good most of the time. I'm able to exercise, work, and make plans. My life is pretty normal and I'm doing well. Even if you have something like Crohn's, it's not a death sentence. Yes, your life will change, and you'll have to learn how to live with a chronic illness. But the illness can be controlled quite well in a lot of cases. I hope that gives you some hope. And as for medical bills, try applying for financial aid through your hospital - I did last year, and I was approved and my medical debt went down to zero! Worst case scenario, you can always set up a payment plan. I have more bills this year and they're letting me pay $50 per month. It's not too bad, it's definitely manageable. I hope that helps!

Colleeny, welcome! I agree with what Sunshine said, when I have a bad flare I need to sit up to sleep. For some reason, keeping all the lights on helps the nausea not be so bad either. It's not the most comfortable thing in the world to sleep upright with bright lights on, but that seems to work best for me when I'd otherwise be awake and feeling miserable. I work full-time too so I feel for you! Have you tried any mild sleep aids? I used to take Trazodone and now I take Amitriptyline. Both are anti-depressants in high doses, but in low doses they act as sleep aids. Amitriptyline, in low doses (25 mg or less), also helps prevent headaches and can calm the bowels in some cases (it seems to work better for IBS than for Crohn's or colitis though). You might want to ask your doctor for something like that. Both Amitriptyline and Trazodone are non habit-forming and won't make you sleepwalk or anything like that, so it's safe to take them long-term.
 
Woke up sick today. again. It's so miserable getting up, having mad D, struggling to get ready in nausea and exhaustion, then to get stuck in traffic while I'm clenching my butt as tight as I can!! It's days like today that I get so upset and frustrated about it all. I just want to sleep and have the pain in my entire torso/abdomen let up just a tiny bit. I almost cried on my way to work today simply because I had to drag myself there worrying the whole way if I would have an accident. (bathroom accident, not car accident)

Then there is walking to/from the bathroom with a trash bucket in front of my body. "Nauseous?" why yes.. how did you know? :p

just complaining.. carry on.
 
Carrie, I feel for you :( I hate when that happens! And of course the traffic is always the slowest when there are no bathrooms or buildings around, so you start freaking out even more because you're like "what if I need to use the bathroom RIGHT NOW". ughh I hope it's gotten better since you got to work, or atleast let up a little bit. :( My mom and I have a joke we always say when my stomach's really bad. I always say, mom can't we just get a another digestive system on Ebay or something? lol. Wish it was that easy!! Hope you're doing better, Carrie.
 
Entwined, welcome! Sorry you are having to go through this as well. :( Crohn's does suck, but it is possible to get into remission and live a normal life! And a proper diagnosis would help you get there. Good luck with your doctors and let us know how the colonoscopy goes!

Colleeny, welcome as well! I have trouble sleeping through my pain too. I don't know if others do this, but I have used sleeping aids in the past. I'm not using them right now, but I am so exhausted by the time I get into bed I pretty much pass out! When I can't sleep through the pain I general use Tylenol PM or Unisom to pretty much force my body to get rest...because rest is really important when your body isn't doing too well!
 
Hi everyone! I have been gone for so long and I wanted to update everyone on what has been going on.

For the new members out there I started to get sick in May with the D. Then I had horrible stomach cramping for three days straight. In June I woke up with pain everywhere in my body. I had colonscopy, Cat scan, blood tests, upper endoscopy and nothing.

Since the beginning of all of this I have been see a psychologist about my anxiety and depression. I was giving lexapro which has been a life saver. I have been recently diagnosed with somatization disorder by three doctors who have all agreed on my diagnosis. For those who do not know what it is I have copied the info below.

Somatization disorder

Somatization disorder is a long-term (chronic) condition in which a person has physical symptoms that involve more than one part of the body, but no physical cause can be found.

The pain and other symptoms people with this disorder feel are real, and are not created or faked on purpose (malingering).
Causes

The disorder usually begins before age 30 and occurs more often in women than in men. The disorder is more common in people with irritable bowel syndrome and chronic pain.

In the past, this disorder was thought to be related to emotional stress. The pain was dismissed as being "all in their head."

However, patients who have a somatization disorder seem to experience pain or other symptoms in a way that increases the level of pain. Pain and worry create a cycle that is hard to break.

People who have a history of physical or sexual abuse are more likely to have this disorder. However, not every person with a somatization disorder has a history of abuse.

As researchers study the connections between the brain and body, there is more evidence that emotional well-being affects the way in which people perceive pain and other symptoms.
Symptoms

People with this disorder have many physical complaints that last for years. Most often, the complaints involve chronic pain and problems with the digestive system, nervous system, and reproductive system.

The symptoms often interfere with work and relationships, and lead to many visits to different health care providers.

Stress often worsens the symptoms.

Some of the many symptoms that can occur with somatization disorder include:

* Abdominal pain
* Amnesia
* Back pain
* Bloating
* Chest pain
* Diarrhea
* Difficulty swallowing
* Dizziness
* Headaches
* Impotence
* Joint pain
* Nausea and sometimes vomiting
* Pain during intercourse
* Pain during urination
* Painful menstruation
* Pain in the legs or arms
* Palpitations
* Paralysis or muscle weakness
* Sexual apathy
* Shortness of breath
* Vision changes

Exams and Tests

A thorough physical examination and diagnostic tests are performed to identify physical causes. The types of tests that are done depend on what symptoms you have.

A psychological evaluation is performed to identify related disorders.

If, after you have a thorough evaluation, no physical cause is found to explain the symptoms, somatization disorder may be diagnosed.
Treatment

The goal of treatment is to help you learn to control your symptoms.

Having a supportive relationship with a health care provider is the most important part of treatment.

* You should have only one primary care provider, to avoid having too many tests and procedures.
* Schedule regular appointments to review your symptoms and how you are coping. The health care provider should explain any test results.

Finding a mental health provider who has experience treating somatization disorders with talk therapy (psychotherapy) can be helpful. Cognitive behavioral therapy (CBT), a kind of talk therapy, can help you deal with your pain. During therapy, you will learn:

* To recognize what seems to make the pain worse
* To develop methods of coping with the symptoms
* To keep yourself more active, even if you still have pain

If you have depression or an anxiety disorder, it may respond to antidepressant medications.

You should not be told that your symptoms are imaginary. Many health care providers now recognize that real physical symptoms can result from psychological stress.

There it is, I have had chest pain for almost 6 yrs and have not found an answer after many doctor visits. I was diagnosed with undifferentiated somatization disorder at the time and was given the choice to start treatment with antidepressants and seeing a psychologist. I refused to accept this diagnosis and now have gone on to develop the disorder and all of the wonderful symptoms. It does not affect my life to a large degree but when it hits I worry and the more worry the more pain. It is very hard to cope with and understand and even harder to accept because the pain is not in my head. Anxiety and depression run in my family and instead of feeling intense emotions I feel physical pain. I want to thank everyone on here who gave me advice and who was there to understand and believe me about the pain, it made a world of difference and has helped me recover. I still struggle with my depression but I have a very good support system to help me through. I will still be active on the boards as I feel that you are the only people who can relate to my pain, even though what I have is a mental disorder I find it hard to relate to those with mental disorders. This is such a wonderful community!
 
Thanks for the welcome, everyone.

Sunshine, I am not having tons of nausea this flare, but when it happens I use gravol. I have been eating ginger chews lately when I get the first sign of nausea. I will try propping myself up tonight and see if that helps with the pain.

Cat-a-Tonic, I've tried those anti-depressant-class drugs and none of them has helped. I know what you mean about horrible nausea - not lately, but I have found that sleeping in the buff with no blankets or sheets touching any part of me helps - even having a sheet on my thighs feels like it's putting pressure on my belly when I'm that queasy.

Allie, I do take gravol or benadryl to sleep occasionally, but I took a bit last night and still didn't sleep, so I spent today feeling like a hung-over zombie.

Tonight I think I'll just try taking a full dose of gravol and guzzling coffee tomorrow (I can be up late tomorrow night, I don't have to get up at 6:30 on Saturday). Thanks for your ideas and support :)
 
Welcome Coleeny! So sorry the nausea gets that bad for you. My upper arm/shoulder gives me hell, and when it's at it's worst, even a thin nightgown strap is too much so I understand where you're coming from. I have these vests with one strap, leaving my bad side free, and I love wearing those!
 
Colleeny, I also have ridiculous nausea. I haven't been able to wear my bra for a week now. I tried a few times, but the pressure is so bad I have to remove it. I feel really weird double shirting it at work, but I don't know what else to do! I need to start taking phenergen again. It was making me have uncomfortable tingles in my extremities sometimes before, but maybe it won't this time.
 
Allie, Carrie, and Sunshine - I'm currently at work, and facebook is blocked from here, but I'll friend you guys when I get home tonight if that's cool. My real name is Jamie. :)

Dayz, I'm glad you got some answers and can hopefully get some relief from your symptoms now! I've never heard of Somatization disorder before so thank you for posting the info about it. I have a lot of those symptoms as well but I'm still pretty sure I have some form of IBD (since I respond to steroids so well and have had a raised CRP, I've definitely had inflammation going on). Yes, please do stick around the forum and feel free to continue hanging around the club, we're happy to hear from you and give you support!

Colleeny, I love ginger for anti-nausea as well. I take ginger capsules whenever I go on a boat ride, as I get seasick very easily, and ginger seems to really help with that. I have Zofran too for bad nausea but ginger helps for milder nausea and seems a little easier on my system than Zofran (Zofran tends to constipate me sometimes which is also no fun). Where do you get ginger chews? I haven't seen those, I usually just get ginger capsules or I drink ginger tea.
 

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