Undiagnosed Club Support Group

Crohn's Disease Forum

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OK2look, welcome to the group and the forum. Sounds like you've been through pretty much every test available! I'm sorry to hear they weren't able to diagnose you, and frankly it seems weird to me that they actually found thickening and inflammation but still can't give you a diagnosis! Next time you're at the doctor, ask them what else besides IBD would cause thickening and inflammation. Get a second opinion from another doctor if you have to, that's just not right that they've seen evidence of the illness but you're still undiagnosed!

I'm not really religious (I would identify as atheist) but thanks for keeping us in your thoughts. And as far as vitamin D goes, I've been taking D3 daily since I first became ill. I take 2000 IU daily in the summer and 4000 in the winter. That seems to be a good amount for me, my bloods have never shown that I'm vit D deficient.

Speaking of bloodwork, my latest results are normal (who would have guessed? ;) ). CRP is 10 which my GI said is within the normal range (last time I had it done, it was 17 which my GP said was a bit higher than normal). So although I'm not headed in the right direction for a diagnosis, at least I feel like I'm getting closer and closer to remission. It's a good thing! It's not a diagnosis, but hey, I'll take it. :)

Star, best of luck at the complaints meeting! Keep us posted. I hope you get some satisfactory results from it. Do you know what kind of sedation you're getting for the upper endoscopy? Is it general anesthesia or that "twilight sedation" stuff? I had the twilight sedation for my c-scope and my upper endoscopy, supposedly you're minimally awake under that type of sedation and can respond to simple requests like if they ask you to turn over or whatever. But I have no memory of either scope, I felt like I was totally knocked out. The upper endoscopy was one of the easiest tests I've had, I hope it's easy for you too. I hope you feel better soon and are able to visit with your grandparents and of course the little kittens. :) In case you couldn't tell, I'm a cat person myself (although I do have a dog as well, I prefer cats, dogs are a bit too high-maintenance for me!).

May, I worked out in the gym for an hour yesterday and I also did a bit of yoga this morning - and I feel great! I've found that every conscious decision I make tends to revolve around my illness - everything I eat, do, everywhere I go, etc is based on, will this hurt, where are the bathrooms, am I going to pay for this later? My illness is always on my mind in some capacity. And I've found that, when I'm at the gym, I don't think about my illness! I feel normal! I lifted weights and ran on the treadmill and did the stationary bike and none of it hurt, it all felt great, and for an hour I didn't give one thought to my guts. I had some d last night and this morning again (I think that was due to not eating a very guts-friendly dinner) but otherwise I feel fantastic. I don't know if I'm on an endorphin high or what.

It's weird because before I became ill, I'd go to the gym 3x per week. But it was always something I had to do, not something I particularly wanted to do, you know? I found it boring and tedious and I didn't really enjoy it, but I wanted to be in shape and, like you said, lose some flab. Now that I know what it's like to lose my health and then slowly regain it, I suddenly LOVE to go to the gym! I get so excited and I feel wonderful the whole time! I feel sad when I have to leave. It's such a change for me. Being in the gym is when I feel the most normal and healthy. I find I don't really care about flab or looking good, now it's all about feeling well on the inside. I really hope I can keep this up and continue to feel great when I work out, regardless of my illness.
 
Hi Cat, yes it's twilight sedation, and the thought of that thing down my throat freaks me out totally, especially with this ulcer/mass there. I have read so many times about people waking up halfway and fighting the staff, i so do not want that to happen! I am going to make it clear to the staff that, if they feel I am coming round or I start to wake up, give me a second dose immediately.
 
I wouldn't be too worried about the upper endoscopy sedation, star. Yeah, it was really awful to gag in my hair, but it lasted maybe a couple seconds..they know to re-sedate you! I'm sure it happens often because they don't quite know how long the examination will take. Plus, even though I was awake, my eyes were taped shut so I never saw a thing, and I was still really out of it so the memory is really faint. I promise it isn't that bad!
 
Allie, I didn't even realize they tape the eyes shut during scopes - yeah, I was totally out of it during my scopes! Star, I recall being very nervous prior to my upper endoscopy too. Nobody likes the thought of a tube going down their throat, it's not pleasant to even think about! I had two great nurses who calmed me down a lot prior to that scope. The first one saw the look on my face and said that if I'm having a bad day now, it's about to get better because she was going to give me some great drugs! (She was totally right too.) And then, my GI was running late so I chatted with another nurse. She saw on my chart that I had been tested for Addison's which piqued her curiosity. She said she is also suspected of having Addison's but she had been on pred for over a year and had become steroid dependent, and you can't be on pred when you have the ACTH test or it'll skew the results. Since she couldn't get off the pred, she couldn't have the test and she was also stuck in undiagnosed limbo. So we talked about that stuff and it really made me feel better that the nurse knew some of what I was going through. Anyway, that was just my experience, I hope you have a good experience too!
 
my gi took blood for the prometious ibd seron 7 test.they agree with me that hemorroids are not the only problem i have.they have seen it in action.so the np in the gi office told me im a strange case for sure.the pill cam is so expensive that they would like to find this fiest if possible.to every one thanks for advice and posts i dont fell so crazy now.i try to pass on the incentive.someday !!!!!! things will be technoligicly faster and more accurate.i have freinds with crohn's.
one freind syas dmso with and without marijuana helps relive his flareups.ive seen dmso used alot for arthrtic problems.but any way take care to all.
 
phlips said:
my gi took blood for the prometious ibd seron 7 test.they agree with me that hemorroids are not the only problem i have.they have seen it in action.so the np in the gi office told me im a strange case for sure.the pill cam is so expensive that they would like to find this fiest if possible.to every one thanks for advice and posts i dont fell so crazy now.i try to pass on the incentive.someday !!!!!! things will be technoligicly faster and more accurate.i have freinds with crohn's.
one freind syas dmso with and without marijuana helps relive his flareups.ive seen dmso used alot for arthrtic problems.but any way take care to all.
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Yup, I had this test. It came back positive for Crohns, but nothing else showed up so no dx. If it comes back positive maybe they'll look that much harder.
 
Ah, crap. I knew it. I shouldn't have said the "R" word - in a post earlier today I said I felt like I'm nearing remission. What a difference a few hours can make! Suddenly at 10 PM I started having d (and it's the "pee out my butt" kind of d), awful nausea, and abdo pain. As the night has progressed I've had dizzy spells, weakness, and I'm shaking and pale. Acid reflux acting up badly too. Pretty sure I'm hitting a flare. I'll know for sure when I do eventually get to sleep - I always get night sweats in a flare. But I'm so nauseous right now I cannot lie down - when I lie down, the nausea gets even worse. My hands are shaking so badly it's hard to type. #$%*!!!
 
Just vomited. I usually do not vomit so that's worrying. I'm drinking Pedialyte and trying to replenish my fluids & electrolytes. Will probably end up going to urgent care in the morning if I'm still feeling like this, especially if I vomit again or if I am still dehydrated.

On a nice note, my brother was standing next to me when I puked (I was getting Pedialyte out of the cabinet when suddenly I needed to vomit, so I puked in the kitchen sink). He was nice and held my hair back while I vomited. But then he tried to convince me to eat some bread because that's what helped him whenever he would vomit - I tried to explain that his vomiting was due to drinking, in which case bread is good, as it soaks up some of the alcohol, but in my case any food whatsoever is NOT a good idea right now. He didn't seem to understand. Sigh.
 
i dont know if i have said here yet but my colon is very very unlarged i have been told its 3 times the size it should be i had my 3rd surgery for a diease i have at the end of april and the doc told me then my colon is very unlaraged i guess its even worse then it was when i had that surgery because when i had the scope done a few weeks ago the GI doc said my colon is very very unlarged and said its only IBS i say thats bulll :ymad: i think its crohn's making it so unlarged i have a diease called endometriosis thats why i had to have my 3rd surgery for it
 
Thanks MHC. I'm still kind of nauseous and not able to sleep. It's nearly 1 AM now. Pretty sure I'll be calling in sick to work tomorrow! I do feel slightly better since I vomited though. Not quite as nauseous as I was, but still not feeling well enough to try sleeping. When I feel like this, lying down makes me nauseous and being in a dark room also makes me nauseous, so for now I'm sitting up on the couch in a fully lit room. Watching awful mindless TV to try to take my mind off of things (I just watched 2 episodes of Hoarders and now I'm watching Toddlers and Tiaras... awful!).
 
I'm sorry to hear that you've been so sick, Cat. Like you, I only throw-up when I'm sick to the point of no return. I hope you are keeping yourself re-hydrated. If your head hurts or you feel very dizzy, you should probably head to the ER, you may be dehydrated, and need some IV fluids.

Don't worry about the upper endoscopy. When I had mine, they made sure to numb my tongue and throat pretty good with a spray numb. It taste nasty, but I didn't gag when the tube went in. I was also sedated fairly well. I think you'll be just fine. Hugs for you. Feel better soon.
 
I'm doing a bit better this morning. Haven't vomited since last night, although I haven't eaten anything either. I'm still really weak though, although I feel less dehydrated. I'm able to keep down water & pedialyte so I'm just going to do liquids for awhile. The d has finally mostly stopped too, again I think that's because I haven't eaten anything lately and there's nothing left in my guts to poo out! I'm just going to rest today, I called in sick to work. A bit depressed though because I had been planning on going to the gym today and to physical therapy tomorrow - both of those are obviously out now. I didn't have any night sweats when I managed to finally sleep for a bit, so not sure if this is a flare or just a stomach bug. Time will tell I guess! Thanks all for thinking of me, I hope everyone else is doing much much better than I am. :)

Edited to add: I feel less dehydrated this morning. Less dizzy and am doing lots of fluids and am able to pee, so I think I'll be okay. If I get worse or if I vomit again though I'll head straight to the urgent care clinic.
 
I'm glad you seem to be doing better Cat!

I myself am not doing good either. Its always a slow decline when I'm in a flare, and this time I was fighting through it. I was pretty much ignoring it actually. I'm at the point where my pain is always at an 8 or a 9, and I am always tired and weak. I'm going on a liquid diet to try and nip it in the bud (I've never done the liquid diet before, but I really want to be better before this weekend... independence day! :().

I should have asked for more tramadol at my last appointment, because I'm going to run out before I see my GI. I'm hoping my GP will do a refill when I see her next week for my "well woman exam"..woohoo ~.~.

Hubby wants me to move up my GI exam, but I don't see what good it will do since there isn't much they can do since I have all normal test results. I am hoping my new GI will have new ideas on how to get a diagnosis, but I don't want to get my hopes up.
 
I'm sorry Cat and Alienwonder that you all are feeling bad :(
I hope you both start to feel better quickly !
 
I'm doing a bit better now. Still haven't eaten any solid food today, although I did have an Ensure a few hours ago and that didn't exacerbate my symptoms. I think I'm going to try a bit of plain white rice in an hour or two. Other than that, I'm still sipping on water and pedialyte, and have taken several naps today.

Allie, I know what you mean about wanting to be feeling better by Independence day. There's a huge fireworks show here on Saturday night. My friend (who is a crohnie) and I were planning to have a picnic together and then watch the fireworks - I was really looking forward to it, so I'm going to take it as easy as I can and hopefully I'll still be able to go. I hope you're feeling better in the next couple of days too!
 
I know this is the undiagnosed club, but I do read posts here off and on. I was in your shoes for many years. I hope you don't mind if I pay some visits. I sincerely hope that you are all doing well, and on your way to a diagnosis or some sort, and better health.
 
The complaints service meeting went really well, the lady we met with was so nice! We've asked for another Dr and an independent review of my case, they're not sure if it can be done outside the Hospital but they will get one as independent as possible.

Been a rough few days, had a mini bad attack Tuesday (thought A&E again), but I napped and managed to get rid of the pain, felt like i'd been hit by a truck though after. Kittens visit has been cancelled by the other end as one of them is poorly with a chest infection. Nasty abdo pains this morning and the throat ulcer/mass is driving me nuts!
 
AndiGirl, thanks for the support! I know a lot of us here (including me) love to hear others say they understand what we are going through and they finally got answers. Personally, it helps me realize that I am not crazy, this is not in my head, and there will be an end at some point!

Star, I'm glad your meeting went well. Hopefully the new GI will offer a different perspective and hopefully you will either get on the road to recovery or at least get a diagnosis.

I just made my next GI appointment (new GI...woohoo..the last one was the first doctor I stuck by for as long as I did! :(). July 19th. So, I will hopefully get some more pain meds before my trip to Paris, so I don't feel as bad taking my pain meds..I am in terrible pain, and I feel guilty with the tramadol, but I know this is its purpose.

I have been talking to the author of "The Fowl Bowel" on twitter and he said something to me that I wanted to share with you guys. "Still no resolution to a diagnosis? You'll be in medical textbooks at this rate". Its always good to know others can see you are very ill and that you aren't a loony. :p If he only knew how many people I know in the same boat as me...I wish we all had the normal road of getting sick and doctors figuring it out quickly! :(

I hope everyone has a good day!
 
Andi, I agree with what Allie said 100%! It is nice to know that others have been in the same boat and have eventually gotten a diagnosis. Not that I'm happy you had to be in this situation, but like Allie said, nice to know that I'm not crazy. :)

Allie, I hope the new GI is good! Keep us posted. I hope your GP appointment goes well too. I picked up a hint of sarcasm when you said it's a "well woman exam". Yeah, "well" except for that silly little undiagnosed autoimmune illness. ;) Hope you're doing better today.

Star, so glad to hear the complaints meeting went well! When do you find out about getting a new GI and an appointment with him/her? I hope the independent review is truly independent too and isn't done by hospital staff. Here in the US, every so often you'll see in the news that a police officer shot someone who maybe shouldn't have been shot or whatever, and the review is always done internally. That kind of thing always bugged me - the police shouldn't be policing the police, you know? And I don't think the hospital should be policing itself either, especially the way you've been treated, so I hope they get someone truly independent to do the review.

Well, I'm doing somewhat better today. My husband thinks I had a stomach virus, as my flares usually last at least a week, I get night sweats during a flare, and I normally do not vomit when I flare. Whatever I've had going on for the past couple of days, it didn't quite fit the pattern of my usual flares. Also, my d & nausea didn't respond at all to Lomotil or Zofran, and those usually work at least somewhat during a flare. Anyway, I am on the mend. I am alternating drinking gatorade, tea, and water, and I've been nibbling on animal crackers and so far so good. Last night I had a few bites of plain white rice for dinner, and that kind of hurt, so I'm taking it REALLY easy with food. Kind of depressed because I was planning on going on a picnic tomorrow, but I'm sure my body wouldn't be able to handle that right now, so I'm going to stay in. The friend I was going to picnic with is a crohnie, so I know she'll understand. I've got a 3-day weekend coming up so I'm just going to rest and recover as much as I can.
 
Hello all. Sorry for not being on here. I have been swamped with legislative changes at work. Lots more work for me now! I will go back and look at how everyone is doing. I miss you all.

I do not have Crohn's. I accept this. My doc and I talked Tuesday. The Hyomax is working, although 2 a day constipates me. He said that, the fact that I am not losing weight, and all the normal tests indicate severe IBS. And since I have fibromyaligia too, he is confident that I don't have CD. I accept that. I didn't at first, but our appointment went well and I am comfortable with that. The vitamin deficiencies are still puzzling, but I am going to look into endocrinologists to see if there is a metabolic disorder. He has also prescribed pancreatic enzymes. He thinks I don't metabolize fat properly. They seem to be working but it is 6 pills a day and they are expensive. Everything is covered now as I have hit my out of pocket, but if I need to stay on them it will be bad.

The real thing that I think is going on, pain wise, is endometriosis. I had a total hysterectomy in 2002, with removal of my right ovary. During the pathology, they discovered endometriosis. That is the only place I really have pain, except when my bowels are full and working hard. This last week, and especially the last 24 hours, the pain has been intense. I am at work with a heating pad on high. I have made an appointment with my gyne to do an ultrasound. It can recur and I fear it has. This would be my period week if I still had them. I worry its in my tubes. It can cause fatigue and d too. So, as my gastro said Tuesday, he doesn't know what is causing this but he thinks its multiple things. I definitely remember this pain from 10 years ago, and it is not fun. I could theoretically go to the ER right now. I'll be on vicodins this weekend for sure.

I will still haunt this place, as my doc said I may have to have crohns meds in the future. Can I be an honorary undiagnosed clubee? Apparently, I do have "severe" IBS.

Have a great weekend all and I'll post again soon.
 
Hey, Quirky,

I'm glad you're in a better place than you were after your upper endo. I was kind of in a similar boat last year; I wasn't sure I had CD or anything autoimmune but I sure did wonder even after the really reliable tests came back normal. I finally decided that I most likely did not have CD and I would trust the results of said tests. Yeah, while some people on here likely do have IBD and are undiagnosed, maybe there is something else going on with some of us as well. It can be very frustrating to box yourself into a diagnosis corner when everything test-wise says "no you do not have this disease." Then you may miss noticing something else that may actually be the root of the problem.

Sounds like your team of doctors wants to get you all sorted out. I hope they will. I read a lot about endometriosis, and if the endos are on your intestines many of the symptoms are IBD-like. So seeing that you've had that diagnosed before, maybe that's what's going on with you. I'm sure your docs will sort it out.

I don't think of myself as an undiagnosed IBDer. Really, I don't even know if I had IBS, but I've been nearly problem-free since a couple of rounds of Xifaxan that ended 7 months ago, so I definitely thank my doctor for that. Anyway, so we will both be crashers, and support the others on their treks to diagnoses. ;)

xx
May
 
Holey moley guacamole, there was a lot that happened while I was away.

Cat, I am sooooooo glad this isn't a flare. I hope you only continue to improve and can do a little something fun. Hugs.

MHC, good luck to you! That's a lot to deal with and stay sane.

Allie, yay for a tongue that is healing. I hope you feel better.

Starr, I'm glad your meeting went well. Good luck.

Sheesh, I'm forgetting the other shout outs I was going to make.
 
Allie (and others), you are not crazy or looney! Don't ever let any medical professional make you think or feel this. I have felt that way many times before my diagnosis. I was told that if I wanted to feel better and be happy, I just needed to change my attitude. I was called a hypochondriac. I kept looking for answers because feeling sick most of the time is not normal. Normal digestion should never hurt. God bless you all in your attempts to seek out medical help and with all your diagnostics.
 
This throat ulcer is drving me in-sane! Since it is here I have decided it may as well show up on the upper endoscopy (unless it heals in the meantime), although it may be that it's healed and just left a whole load of junk behind, hard to tell. Last night when I swallowed or breathed really deeply I was getting chest pains. Sure am glad in a way having this test! Also been getting pains under my ribs which I read somewhere was a sign of gastric ulcers.

But once my test is over I will go and see GP for hopefully some antibiotics to get rid of it.
 
Sorry star! Hopefully that will go away, or at least show something on your endoscopy.

AndiGirl, I completely agree. I have been told it was all in my head before, by a nurse practitioner who checked my symptoms on her iphone. ~.~ She told me to take some Zoloft and my pain would just disappear! Thank god she got me a referral to my GI, even though he is a good 3.5 hour drive away. He has been a blessing the past 6 months. He tells me every appointment that I'm not crazy! I completely understand that he can't do much with so many normal tests. That's why I'm waiting for some time and then trying the tests again - I know it can take time for this to actually show up.

Meg, I completely understand the trying to reply to so much you missed, it can get confusing. :p Thanks. The bacteria killing mouthwash did exactly what he wanted it to! There is a reason you can't get it without a prescription! O.O
 
Allie, I am glad your mouthwash helped, I know what a misery those ulcers can be, and yours was a nasty one!

That time of the month soon which is when my depression is always worse. No different this month with the added stress of the upper endo next week, and not having anything concrete booked for afterwards.

It's so nice to talk on here to other undiagnosed folks who understand. I just can't take the waiting anymore. I don't mean "omg can't wait for my new iphone!!!!", I mean I can't wait any longer for a diagnosis or to actually start having a life. At this rate I will end up the crazy, spinster cat lady who has been sick for decades, and I ain't kidding. :rof: Everything that my friends take for granted, and think of as normal, I don't get, and it's been that way my whole life (ie i've never had a birthday party, had a parent with a car as a kid, never was any money/ transport to do dance lessons/ out of school clubs, sports etc, now I can't do anything that is normal for a 24 year old). Even with that philosophy I never, ever in my worst nightmare thought my life would turn out like this.

Going to have an early night, one of those times when all I can do to cope is to go to bed and shut the world out.
 
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Hi all

I've only just found this forum, read a few things but not taken too much in. You are all a lifeline.

On Friday I saw my GP. (I was called in by the surgery which is never a good sign - if the NHS works the way it's supposed to, you know you're in trouble!) She told me that my consultant says I had bile acid malabsorption and had to have these sachets to help with it (colestyraimine? They taste disgusting anyway) but she has to do a medicine review because of my Crohn's. When I said I don't have Crohn's, that it was ruled out following a colonoscopy, she just looked sad and asked me when I was next due to see the consultant. I have just had a SehCAT, I know that can identify the bile acid thing but not Crohn's???!!! So I feel I am in more in limbo than ever and I have been imagining all kinds of terrible things. I am frustrated that I am weeks from seeing my consultant again and in the mean time all I have is an unofficial diagnosis that seems to be pretty arbitrary. At the same time I am relieved in a stupid kind of way. I am relieved that it is not any of the things I have been told at various times:

* That I am crazy. I thought I was, for years
* Hypochondria. Doctors thought I was, for years
* Psychosomatic illness (Combination of crazy and hypochondria?!)
* Neurosis (all of the above?)
* Depression (all of the above?)
* Ovarian cysts (this doctor claims to have seen them on ultrasound and everything. Maybe he was the crazy one?)
* Women's problems, that I will just have to learn to deal with like everyone else (yes, that doctor was a man, obviously)
* Cancer (they thought I might at one stage, family history)
* Irritable bowel syndrome. Can't tell you how many times this was diagnosed - including by the doctor who now thinks it is Crohn's.
* Food intolorence. I can't tell you how many elimination diets and prickle tests I have done.

I feel more alone than ever, because what if it's just GP supposition and I'm no nearer to getting an answer? And my other half, employers etc seem to think well, you have a diagnosis and some medication, isn't this enough now? Sorry if I'm rambling and not explaining myself, I just have over a decade of pent-up feelings to vent...
 
No, we completely understand how you feel, we have all been through the same at one point or another! At my latest GI appointment I too got told "go away, tell yourself Dr Idiot said tests are normal*, and you will be fine".

I know how slowly things move in the NHS. How about contacting your Consultants office and asking to be put on the cancellation list? I have had a few tests sooner that way. And at least you are trying to get things sorted, does help with the frustration sometimes. Or, how about asking your GP to see if she can get you seen any sooner?

And you mention CD being ruled out after a colonoscopy, that happened to me too, one test is never, ever enough to confirm IBS or rule out CD as it can occur from mouth to anus (apoligies if you have had more).

Good luck and keep us updated!

*when they are not all normal!
 
Hi Sock Monkey and welcome to the club. I concur 100% with what Star said, one c-scope is not enough to rule out Crohn's. Have you had any other tests done - things like upper endoscopy, CT scan, MRI, pill cam, small bowel follow-thru? If not, push your doctor to order some of those tests. Like Star said, Crohn's can manifest anywhere from mouth to anus, and it most commonly appears in the small intestine, so if they've only looked at your colon then they've not been very thorough and they've certainly not ruled out Crohn's!


Star, sorry to hear you're so down. I really hope the upper endoscopy gives you some answers, or that the new GI can get you a diagnosis. You said you don't have anything booked after the upper endoscopy - when do you find out about your new GI? I would imagine you'd get an appointment booked with him/her as soon as the referral goes through?

I'm not doing so well today myself. Most of you probably remember that I was very ill Wed night/Thurs morning with horrible nausea, d, vomiting, etc. It wasn't a flare as I didn't get night sweats. I felt okay Friday and Saturday and eased back into eating. But Sunday I felt nauseous again and nearly vomited, and had more d again. I haven't been feeling well since then. I am puzzled because Zofran isn't really helping much with the nausea, and it usually works really well for me. So then I remembered, my GI put me on that hyoscyamine medicine about 2 weeks ago, and I've been ill for about one week - so it's my thought that this new med is making me ill. I stopped taking it yesterday and I put in a call to my GI's office first thing this morning, am waiting on a call back. I was upset already that he put me on what is essentially an IBS med, and now it's likely made me feel worse! I'm so angry!

If it's not the hyoscyamine that's doing this, then my other thought is something like a stricture or partial blockage. That would explain the vomiting, the pain, the d - I didn't have d this morning but I had those pencil-thin "skinny poos" which I believe can mean narrowing, inflammation, or stricture. I can drink Ensure, tea, water, etc just fine, but it's when I eat solid food that I start to feel nauseous. So again that makes sense that it could be something like a stricture. In a way I hope it is something like that, because that would show up on a test for sure. But in the meantime, I'm feeling kind of awful and am just barely holding in there while waiting for my GI to return my call.

I hope everyone else is doing better than I am today!
 
Oh dear Cat I am sorry to hear that :(

I see Rheumy on 20th but unless he is willing to order more testing I don't think there will be any outcome from that since am not ready to decide on the immunosuppressant trial.

Hospital have 25 working days to sort my issues, they can ask for more time but I have to agree. If they do I will say no since I think been going on long enough and a review/ allocating me a new GI should not take any longer than that time frame. But yes I assume once that has been done I will be contacted with an appointment, i've learnt in the past with medical issues, once you complain once, they are super keen not to give you any more cause for complaint so they suddenly become helpful. Here's hoping!
 
Cat how are you doing? Have you heard from your GI? Are you running a fever? I'm sure you would have said if you did...just still wondering if you've got some sort of bug?

Sure you've googled the side effects for hyomax...but in case not, here ya go:

http://www.drugs.com/sfx/hyoscyamine-side-effects.html

Nauseau is in there...so maybe it's SE from the med...gads, who knows? Hopefully your GI will have some pearls of wisdom for you.
 
May, thanks for that link - when I first started taking Hyoscyamine, I did glance at the potential side effects, but it seemed like the standard list of side effects that comes with most drugs, so I didn't really pay too much attention to it. And then when I got the nausea, vomiting etc I thought it was a virus, as it came on so quickly and didn't feel like a flare. It was only when my symptoms came back after a couple of days that I realized it's not a flare nor a virus - I was afraid it might be a stricture or partial blockage and I didn't think that side effects from an IBS med would be that severe or would hit me after I had been on the med for a week (and I already had one side effect from Hyoscyamine, dry mouth, right away - so I kind of figured I wasn't going to get any other side effects). But I looked again at the side effects, and sure enough! I think it's definitely side effects of the Hyoscyamine - nausea, vomiting, diarrhea are all listed. And I noticed a few days ago, while looking in the mirror, that my pupils seemed oddly too large - now I see that in the side effects, enlarged pupils are one of the more common side effects as well. I'm going to stay off of the hyoscyamine! Seriously, I had less side effects when I was on PRED! Grr!

To answer your other questions, no, I have no fever. I rarely have fevers, in fact I never do even when I flare. The only time in the past 2 years that I've had a fever was when I had the flu. I get chills in a flare but oddly my temp is always normal or a little below normal. Oh, and my GI hasn't called me back yet! I'm super angry about that. I called his office at 8 AM and it's 3 PM now. His nurse called me around 9 AM to clarify some details about my symptoms and she said either she or the doctor would call me back "soon." 7 hours is not "soon" especially when the patient in question is suffering from nausea and vomiting! I'm so upset. I'm thinking about asking my GP for a referral to a new GI. The worst that can happen is that the new GI sucks and I go back to my old GI, right? When you get a referral to a new GI, you can still go back to the old one, correct? I don't know. On one hand my current GI doesn't seem like he's in any hurry to diagnose me, but on the other hand he does think I likely have IBD and he's been willing to prescribe Entocort and pred although clearly my current symptoms don't seem to worry him. What would you guys do? Stick with the current GI or get a new one? Further complicating things, a new GI would probably want to re-do a lot of the tests I've already had, and I can't really afford a ton of tests. Urgh. I wish the medical system worked better than this, you know?
 
I meant to add: I see that another potential side effect of Hyoscyamine is "an exaggerated sense of well-being". Why can't I get THAT side effect??
 
That's a tough-call, Cat. Yeah, if you go to another doc, he may very well want a full work-up on you esp since it's been almost a year since most of your tests were done. But if you're not happy with your doc or his office procedures, or his staff, you certainly have the freedom to go to someone else. I don't think you get black-listed if you go see another doctor. I don't think docs get mad if you cheat on them. :) Plus we all deserve docs whom we feel comfortable with and/or trust. ((shrug)) Like I said, tough-call...Maybe you can look around and find one online who advertises that their specialty is IBD?

That time I had the UTI I called both my GPs office early in the morning and then when they didn't call me right back (b/c when you're suffering time is of the essence), then I called my GYN. He got the script called in, and my GP's nurse didn't even call me until the next day!! I know that there is a difference of night and day b/t those two offices, so I don't feel like I need to dump my GP or anything - I was just a victim of the hustle and bustle of that office. It was a Monday, too, so I'm sure they were swamped. In my GYN's office, he's the only doc, so it's just a matter of getting him a message. So maybe a smaller practice might also be of benefit to you? Don't know, but I feel you should feel absolutely comfortable with anyone poking anything down around where GIs poke around. ;)
 
May, my GI's office definitely is hustle and bustle. And I think that the timing might just have been bad, what with yesterday being a holiday and all. So I guess I should cut him a little slack. But still, I told the nurse about the nausea and vomiting - I've kept my cell phone on me all day, I've even brought it into the bathroom with me so that I wouldn't miss it if they called (I hate bringing my phone in the bathroom, I've got this irrational fear that I'm going to drop it in the toilet!). My cell service isn't the greatest and sometimes (even when I've got good reception) my phone doesn't ring and calls go right to voicemail, but I haven't gotten a voicemail yet either.

I think I'm going to ask my GP if he can recommend a good GI. I trust my GP's opinion, I'm just afraid that he'll say my current GI is a good one and it's just that I'm a complex case. I'll check the CCFA's website too to see if I can find an IBD-knowledgeable GI that's covered by my insurance. If I find one that sounds promising, I'll ask for a referral. Yeah, it has been over a year since many of my tests - my c-scope was in April 2010. CT scan was, I think, in June 2010. So it wouldn't be awful to have those re-done I guess.
 
Starr: I know exactly how you feel. I often find myself taking my anxiety pill because I know it can knock me out and I can sleep and forget about all of this. I am having it pretty hard as I have joint pain that is migratory so I can be massaging my hands and all of a sudden my knee decides it wants to join in. I like you never imagined myself to be in this position. I thought I had HIV and got the clear and was sooooo relieved I wanted to kiss the ground only to later on have to deal with some kind of autoimmune disease. I admit I have asked why me? or said how unfair this is but then I come on this board and it helps to not feel so alone. I also have pelvic pain and rectal pain which is constant. My doctor basically told me that if they didnt find anything they would eventually just tell me I have fibromyalgia or to keep testing for lupus and RA until something shows up....I cried for two days straight as I am at my wits end. My doctor thinks I dont have chrons but this all started with stomach issues which I dont have at the time but i still get cramping (she says ibs). My other doctor (one of many) said I had some kind of virus for a month and now I am dealing with reactive arthrits which should clear in a matter of months. I am not buying this. How does a virus last for a whole month with random diahhrhea and blood? He gave me a shot which did nothing but make my arm feel sore. I went to see another GI doc and he said he would do the pill cam to rule out chrons because he highly doubts it as well. Then why the hell does my arse hurt? and why have i lost so much weight and why am I in so much pain and why is my hair falling out in chunks : ( he said he is 100% sure it will come back negative. I have that scheduled for tomorrow but I am starting to give up. I have had to quit my job my school and my boyfriend has broken down in front of me which he has never done. I dont think this is lupus or RA and i for sure as hell dont want to be told i just have fibro because thats like being told i have ibs and basically live with it. I had to crawl to the bathroom today and have my boyfriend stand by while I pooped in case I passed out(very embarrassing by the way). How is this normal? I pray that one day I will wake up and feel better and that all of this will magically dissapear but I know it most likely wont. I want my life back.

Out of curiosity, has anyone ever just felt maybe this is something else and started to to believe the test results?

I am starting to think I have cancer, wouldn't that have shown up on my blood work or CT scan?

The steroids I took also didnt work but maybe because it was a low dose.

Cat: I hope your feeling better today! I would go with the full work up if I had the choice. After a year I believe it would be warranted as you still have symptoms.
 
Cancer would I am pretty sure have shown up in some way by now- either by blood or a CT, that's what I keep telling myself anyway, lol!

Dayz, I am so glad you are getting a Pill Cam, it is a very, very good test. Some do remain undiagnosed after the test, but I have seen several on here be diagnosed through it after all the other tests came back normal and missed it.

At least, if the test does come back normal, that might make you think it's more of an auto-immune condition, and you can push a Rheumy for testing in that area. Could be a way to resolve things in your mind so to speak.

I 100% understand your feelings, I have no faith really that my upper endo will find anything, and I will be like this forever!

I had a Pill Cam booked myself but it was withdrawn. Health Authority will only fund if biopsies come back CD (upper endo next week, fingers crossed!) or if you are aneamic through a suspected small bowel bleed. I have my FBC checked alot in case and Cat here put me onto Ferretin so I am getting Rheumy to test that week after next. (apparently if that is low then technically you are aneamic).

I have accepted I will not get the test without one of those two happening, however a girl can still hope! Because if I got it and it came back normal, I would seriously review my thoughts as to what was causing this, even though CD is such a good fit for my symptoms.

Cat, I know you like your GI but I have to say when you saw him last and he decided on a "wait and see" approach I didn't think that was very helpful. I understand not wanting to leave one who is considering IBD though.
 
Star, I have low ferritin but I am not anemic. The thing is, if your ferritin (iron stores or pre-iron) is low, then this can contribute to anemia but it doesn mean you are anemic That's how it was explained to me by my GP and dermatologist. Trying to get it up is hard...I was checked twice last year and was at 14 and then 17 a few months later. I'm going in for bloodwork tomorrow and hope it'll be checked as I'd like to know where I am. The nomal range is something like 20-300 and I forget the units...but they say 70 is minimal for healthy hair growth. That's why I want mine up so my hair will hopefully stop shedding so badly, among other reasons, like avoiding anemia in the future.
 
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Well if my ferretin comes back low I shall argue my best that I have a form of aneamia and therefore qualify for a Pill Cam! Or it's more ammunition for me that something more than IBS is wrong.

Anyway I have decided if am no further in a few months then I will approach PCT about it again, asking for a special exception to be made in my case. As when it was turned down before I had been passing dark blood but had not realized it. Passing blood 1-3 times a week right now, had an attack that landed me in A&E and so bad was given oral morphine, plus 2 mini ones since that. So, although I still do not fit their criteria the clinical situation has changed and I am worse.

(For those not in the UK, a PCT is a Primary Care Trust which is a local health authority, not affiliated with any particuar hospital etc. They hold the money bag and have final say over say a GP or GI about a test).
 
Dayz, I'm glad your doctor at least believes it's something autoimmune rather than just saying it's IBS. Try not to worry about cancer, Star is right - if it were there, it would have made itself known already. Are you having the pill cam done today? Best of luck with it! I had the pill cam done back in Sept and unfortunately mine came back normal, but Star is correct that it is a test with a fairly high rate of success in getting a diagnosis when all other tests have failed to find the source of the illness. Keep us posted on how it goes and when you get the results (in case you haven't already been told, the results can take about a month, as it's very time-consuming for your doctor to look at each image because tens of thousands of images are taken by the capsule).

Star, I know the feeling, I had no faith in my upper endoscopy either. My pain is usually in the lower-right so I didn't think the upper endoscopy would find anything, and it didn't. But it did rule out celiac disease, so at least I got to cross that off my list. That's interesting about the PCT thing, it certainly sounds to me like you've got a compelling enough case to make an exception. I hope that if it comes down to that, they let you have the pill cam. Especially since you've had some blood, obviously the blood has to come from somewhere, and the pill cam would be able to see exactly what and where is bleeding.

As for me, I still haven't heard back from my GI. Didn't get a call back yesterday so I called his office again this morning and spoke with a different nurse. She took all the information, again. She said that my GI is out today but will be back tomorrow, so worst case scenario I'll hear back from him tomorrow. She did say that she's going to try to get some answers for me today. In the meantime, I'm still nauseous and not feeling well. I had to get up in the middle of the night to poo, which is usually only something that happens during a flare. Had horrible cramps too. When I got up this morning, I felt mostly okay and I tried to do a few of my physical therapy exercises. But by the 2nd exercise, I started getting stomach pain, and when I tried to do the 3rd exercise I got so nauseous I nearly vomited onto my yoga mat. So I'm still not doing very well.
 
Hey, Cat, sorry you haven't heard back from anyone. That sucks. I hope this nurse can help you out somehow or that this goes away soon. If it really is from that med, I wonder how long it would take to get out of your system?
 
That's crazy you haven't been called back Cat! o_O I really hope they get back to you soon. If they think its IBD, they need to get it into control. I know how frustrating it can be for your GI to go "this really looks like IBD" and then they go "ok just take these pills for awhile and we will see".

My husband actually said the other day, "what if we just went to an ER and said you had crohns and your symptoms were getting out of your control?" I know I would never actually do that, but just thinking about it...hopefully one day I can say that with proof!
 
Cat: Iam sorry you dont feel well. That is really annoying when you really need to talk to someone and they push it off until the next day. I hope your feeling better!

I wasnt able to swallow the pill cam : ( I was soooo nervous and the two nurses were getting very impatient. I am so mad at myslf but I simply could not swallow the darn thing. The doctor came in and sat me down and I cried my eyes out I told him that I really wanted to try again (after 20 min) and he told me that he really does not think I have chrons as I have already had colonscopy and ct scan. I told him that I would like to try again but he said that I can but another day. I was also given a refferal to see a psychologist :ywow: I cried all the way home. I am so frustrated I know I am letting my nerves get the best of me but as much as I try to let go the pain reminds me that something is horribly wrong. My dad believes me that this is not me and that something is wrong but he wants me to take a break from testing...I cant I need to get tested because I feel there is something terribly wrong. I cant believe this I am so upset at myself and now the doctor officially thinks I am nuts and on top of that I now have diarrhea from the stupid prep. I am but because of all of this. I need a drink....make that a whole bottle of tequila.
 
I'm so sorry Daz...that sounds awful! They should have let you try again...its already paid for since you put it in your mouth, right?

Don't ever think its all in your head. Don't let them think your crazy!
 
Perhaps Dayz it's time for a new set of Drs or another Hospital. There are members on here who had every single, numerous test come back normal, until they had a Pill Cam which found CD.

When you have another go, have all the medical staff leave the room, and make it clear you need to take your time and be alone, or maybe have a family member with you. YOU are the one calling the shots here, don't let them bully you.

I remember seeing you were considering a Hospital in Mexico? And by no means do you need to accept the referral to a Psychologist, no-one can force you to go. I would be changing Drs asap after that!!

Cat, I am disgusted that you haven't been called back yet. As you said yesterday was the day after a holiday, I would allow the morning for GI to catch up with any urgent business and then I would have been expecting him to call in the afternoon since the matter was serious. And you've still not been called at the end of the next day!

I've got to ring the Complaints service Friday, over a week later and have heard nothing. No written confirmation that the complaint is being dealt with or any contact from the person looking at my issues. Unless there is a darn good reason I will refuse any request for extra time, 25 working days is more than enough to have a review conducted of my case and allocate me a new GI. Had a mini flare again yesterday evening, thought i'd have to go to A&E again but luckily it passed.
 
Dayz- I am so sorry- my heart aches for you. Stupid doctors. They just don't get it. They just really don't care how sick we are!

Cat- I hope you are feeling better- have you heard from you GI yet?

Well, I have my upper endoscopy tomorrow. I had by CT scan two weeks ago- drank 1 cup of barium, but because of my vomiting problem, it came right back up. The tech said, no problem, here is another cup- drink up! Then I had to drink 2 more- ugh. Diahhrea from that was not fun. The test showed pressure in my gut and swelling but nothing else, so the doctor said, looks like IBS-D. NO I don't think so- do you vomit daily with IBS? It doesn't make since. Plus I have lost 20 lbs total and I have read that you don't lose a lot of weight with IBS- so I just don't know.

So I have an upper endoscopy at 11:00 in the morning- I have one hour to finish my Slurpee. I am going to be SO thirsty!! I am hoping they find my problem, whatever it is, in my tummy. Maybe an ulser? I have had one before and I used to vomit with that one, so I am hoping, because at least that would be an easy fix. I used to take Zegerid for that ulser and I found out that it comes in a pill now so I wouldn't have to drink the fizzy stuff. I would still have the D and the abdo pain, but at least I could stop vomiting!!!
 
^^^Good luck, have you already had colonoscopy done? I do hope they find something up there that is causing you to vomit. My boyfriend had what i call a spell of vomiting for two months. It was random so it wasnt a virus. He went to a doctor for natural medicine from Mexico and he has been fine ever since. I will ask him what the medicine is called and what exactly the doctor told him. Hopefully you get some answers. Let us know what happens.

I was reading through this thread from the beginning and its like reading a novel, because you find out all of these peoples test results and what has happened and you read to find out what the doctors have said and who is feeling better lol its our undiagnosed saga. Seriously I am going to tell both of my GI's to read this whole thread- or better yet the whole website:ybatty:
 
Dayz- You're right about our saga- we could be our own soap opera. :tongue:
Yes, I have had a colonoscopy- other than some diverticulosis, it was normal. Normal- ugh. I hate that word. Nothing that any of us goes thru every day is NORMAL :yrolleyes:
 
Dayz, that's just awful that they wouldn't let you try again to swallow the pill cam! That capsule is pretty big, to be honest I was completely surprised that I managed to swallow mine on the first try, and I could easily see how it'd be very difficult to swallow it especially if the staff is acting impatient and making you nervous. It doesn't sound like the doctor or nurses treated you with a lot of empathy. And I cannot believe that they kicked you out without letting you try again after you had gone through prep!! That is unbelievable, and if it were me I'd be calling up or writing and making a complaint! That kind of treatment is just unacceptable! Did the doctor at least give you a date of when you can go back and try again??

Speaking of making complaints and unacceptable treatment by doctors, guess what - my GI *still* has not called me back. It's past 4 PM and I was promised a call back by today at the very latest. I am going to call tomorrow morning and throw a fit and complain to whoever will listen. At this point, my nausea is pretty much gone, but that doesn't mean that I don't still want answers from my GI - I still have questions regarding if there's another (not IBS-specific!) med that I should try instead, was it safe to stop taking the Hyoscyamine cold-turkey, etc. And I want to make sure that they note in my file that I'm not to be given Hyoscyamine again. So tomorrow I'm going to call, complain, and try to get my GI to respond to my questions. And then I'm going to start doing research into other GI doctors in my area and see if my GP will do a referral. I am just so done with being treated like I'm not important by my current GI! Him not responding to my calls for 3 straight days, that's the last straw.

Shan, it seems I'm a little late to the party - I hope your upper endoscopy went well and that you're home resting now! You said you vomit daily (to answer your question, NO, you absolutely do not vomit daily with IBS!) - I would imagine that the upper endoscopy might be able to find the cause in your case. I had pretty much zero faith in my upper endoscopy, because my pain is lower (where the upper scope wouldn't be able to reach) and I rarely vomit, so I was pretty sure I didn't have active illness anywhere in my stomach or the upper part of my small intestine. But with frequent vomiting, I think that would indicate something like stomach/duodenum/jeujunum involvement. Keep us posted, fingers crossed for you that this leads to some answers!

Allie, in regards to what your husband said about going to the ER and saying that you have Crohn's - I believe Astra (Joan) has actually suggested that in the past. She said something like, if you just say you have Crohn's, they'll do more tests and treat you with more urgency, and you can always clarify later and say well, it's a long story but I probably have Crohn's... So anyway, it's actually not a terrible idea, especially if you're having really awful symptoms and are in dire need of help.

Star, I guess we're all getting inexcusably bad treatment lately! I can't believe the complaints people haven't even given you a status update yet! I hope that when you call them tomorrow, they don't ask for extra time or have forgotten about you or anything like that. Maybe they're just so very busy digging up dirt on your bad GI that they didn't have a spare moment to call? Ha ha, yeah, and maybe my GI has been so busy worrying about me that he couldn't bear to call lest I vomit into the phone. ;) Sorry to hear you had another mini-flare, that's perplexing that you've had so many lately. I hope you get your new GI soon and that they can get to the bottom of all this. Keep us posted on what you find out when you call the complaints people tomorrow!
 
I am just so done with being treated like I'm not important by my current GI! Him not responding to my calls for 3 straight days, that's the last straw.
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Good for you Cat ~ I hope you do just that ! You deserve better !
 
Results- yea! An answer!!

Finally!!!
Had my upper endoscopy today, and they found that I have moderate gastritis and LOTS and LOTS of tiny little pin-sized ulcers all along the lining of my gastric body, gastric antrum, pre-pyloric stomach and the 2nd portion of my duodenum. The answer to my constant and persistent nausea and vomiting!! And also that weird burning nauseous pain I was having right under my breast bone and around my belly button. I am awaiting the pathology tests on the biopsies they took and also on the Helicobacter pylori tests. :wink:

As far as the dirrhea every time I eat and those abdo pains and cramping- the doctor is STILL sticking to the IBS thing. I guess I will have to try to learn to live with that. :stinks: At least I can stop vomiting eventually once I begin the medication to help heal my stomach! Yea!! :ylol2:
 
How about finding a more open minded Dr? It is not a coincedence surely you have all that in your digestive system plus the bowel issues.

I find some Drs will not change their minds no matter what the evidence, I think they don't want to admit they made a mistake/were narrow minded.

Heck, my (soon to be ex) GI thinks bleeding and night attacks are part and parcel of IBS, since they don't want to admit they made a mistake in 2007!

Hope you get to start the meds soon :)
 
Good for you that they found the cause of your upper GI problems, Shan! That hopefully means treatment which will bring you relief.
 
Thats great news Shan! However, they should not say IBS now that they have found something...~.~. I would get a GI to give a second opinion on that one. Hopefully the biopsies will show why this is going on, and I hope you are on the mend soon!

Cat, thats really interesting! I would feel so guilty in lying, or almost lying, but I might do it if it gets bad enough. I just didn't explain my history of "IBS" when I went to the ER in April and they went "ok, we feel the inflammation by hand, you have IBD"..but then I explained my history, the test results came back ok (only a upper endo and ultrasound), and they gave up. >.< I am so sorry your GI never called you back..that is awful. I hope you get answers real soon.

I had a "well woman exam" today and it was not fun. ~.~ It was with my primary care, so I was able to update her on everything after she did a breast exam, pelvic exam, and pap smear. Yuck! She refilled my tramadol (three months worth - woohoo!) and told me to keep on going with the GI's and hopefully they will find something soon. The last thing she said was "keep yourself healthy, ok?" I laughed once I got out of her office...its hard to keep myself healthy when I have all this going on and doctors are saying everything is ok! >.<

Another thing that made me laugh is I was flipping channels on the tv yesterday and Dr. Oz was doing a "health quiz", saying if you got a certain amount of points from the questions you need to see a doctor because you are a "ticking time bomb". Well, I did the quiz online for giggles and I got a 63...10 points was considered unhealthy. With all the yes's to the fainting, abdominal pain, and unitentional weight loss...I just think its hilarious that his quiz means I am sick yet my GI is just waiting to see the "time bomb" go off. Crazy!
 
I've been thinking of asking new GI for food intolerance testing and more detailed bacteria investigations (my previous test measured the amount, wasn't looking for a type). What does everyone think?
 
Okayyy, this is weird. My phone rang last night at around 9 PM. I didn't recognize the caller's number, and personally I feel that it's a bit rude to call someone that late (I am usually in bed by or before 10 at the latest) so I didn't answer it. I was in kind of a grumpy mood and didn't really want to talk to anyone anyway, and I assumed it was a wrong # since I didn't recognize the number. So the caller left a voicemail - it was my GI!! He must have called me from his home which is why I didn't recognize the number (I pretty much have his office # memorized by now!). But, in his voicemail he didn't answer my questions. And of course I wasn't able to reach him back - tried calling his office again this morning too, I was put on hold for awhile and then the call got cut off. I don't have my GI's email address so I guess I'll try calling, again, in a little while. Annoying! At least he finally made the effort to call me back though! I was feeling very ignored and I'm still pretty mad - what kind of a doctor calls their patient, who they know hasn't been feeling well, at night like that? (I'm tempted to call him back and say, that call woke me up and the stress made my nausea worse! Ha ha, that would be kind of mean, but it'd get the point across that you shouldn't call sick people when it's late!)

Shan, I'm glad the endoscopy found something! I agree with everyone else, I would still question the IBS diagnosis. But at any rate, I'm glad you'll soon be getting some relief from the nausea & vomiting. Vomiting is my #1 least favorite symptom and nausea would probably be #2, it's just so miserable. I'll be interested to find out what the biopsies find (if the biopsies indicate Crohn's, then surely your doctors won't be able to say that your diarrhea is caused by IBS, right?). Keep us posted!

Allie, do you have the link for that quiz? It sounds interesting, I'm guessing most if not all of us here would score much higher than a 10. I don't watch Dr. Oz although I did happen to see an episode once - I was getting some work done on my car and that show was playing on the TV in the waiting room at the mechanic's. The episode I saw was actually interesting for a very short amount of time. At the beginning, Dr. Oz was like, "Have you had unexplained abdominal pain, diarrhea, nausea, weight loss?" And I was like, "YES!" And Dr. Oz said, "If you answered yes, then you probably have Celiac disease!" And I was like, "NO! Dammit!" I was so disappointed, I was sure it was going to be an episode about IBD. At the time I already knew for sure that I didn't have celiac. Disappointing! But that quiz sounds interesting.
 
Star, you must have posted at the same time I did. I think that a test like that can't hurt and the worst it'll do is come back with another "normal" result, right? I know you mentioned that certain foods give you horrible symptoms so I would definitely go for it. I saw a study posted on the forum recently that said something to the effect of, people with IBD have significantly different types (and possibly amounts?) of bacteria in their guts than non IBD people have. So that could potentially give you answers, I say go for it!
 
That might be a good idea. Hmm I've never thought of doing that myself. I was tested as a child due to seizures, and found I am allergic to caffeine. In a book I read called "Whats wrong with me?", they suggest food intolerance testing since food allergies can cause the same symptoms as IBS/IBD.

The only reason I haven't done anything like that is because of the pattern of what makes me sicker...at 16/17ish a high fiber diet helped. I ate fiber bars and cereal daily. When it all turned nasty and different a year ago, fiber became my enemy. Fresh fruit/veggies as well. Which really sucks, because I used to eat mostly fresh fruits/veggies. :( I hurt myself at times because I hate eating "processed" foods. I'll give in and eat an apple, or grapes...and I totally pay for it later. Especially if I am flaring! >.< I don't think food intolerance is my issue because of the change in symptoms and how it matches the foods that irritate IBD.
 
StarGirrrrl said:
I've been thinking of asking new GI for food intolerance testing and more detailed bacteria investigations (my previous test measured the amount, wasn't looking for a type). What does everyone think?
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Yeah, I agree with Cat, it can't hurt, and if everything comes back normal, at least you've eliminated allergies/intolerances as the source of your problems. How do they test for types of bacteria? I know there is a breath test that is supposed to look for SIBO, but I don't know if that is qualitative or quantitative.
 
Yeah Cat I don't normally watch him either. He never does much on issues that pertain to IBD...he did one on constipation vs. blockage that was helpful, but other than that he loves to talk about "miracle foods" and weight loss. You know, stuff that pertains to people without undiagnosed mystery illnesses. ;)

Mayflower, if its the same scoring system as the quiz on the show, its above a ten that he thinks you need to visit a doctor. I completely agree though, he can be dramatic over the weirdest things...very dramatic!
 
allieinwonder said:
That might be a good idea. Hmm I've never thought of doing that myself. I was tested as a child due to seizures, and found I am allergic to caffeine. In a book I read called "Whats wrong with me?", they suggest food intolerance testing since food allergies can cause the same symptoms as IBS/IBD.

The only reason I haven't done anything like that is because of the pattern of what makes me sicker...at 16/17ish a high fiber diet helped. I ate fiber bars and cereal daily. When it all turned nasty and different a year ago, fiber became my enemy. Fresh fruit/veggies as well. Which really sucks, because I used to eat mostly fresh fruits/veggies. :( I hurt myself at times because I hate eating "processed" foods. I'll give in and eat an apple, or grapes...and I totally pay for it later. Especially if I am flaring! >.< I don't think food intolerance is my issue because of the change in symptoms and how it matches the foods that irritate IBD.
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I'm not saying you should or should not do the food testing, but I know that things you're allergic/intolerant to can change over time. I used to get hayfever as a child and teenager, but as an adult I do not. Also, my husband developed a severe shrimp intolerance at about age 25 out of the blue. His sister developed an almost identical problem at around the same age, only broccoli is her enemy. I myself have become intolerant of high amounts of fat in meals (although not the good fats like nuts, and avocados, and stuff like that), and possibly milk gives me issues. That is really recent, the milk thing. Just to throw that out there...
 
allieinwonder said:
Mayflower, if its the same scoring system as the quiz on the show, its above a ten that he thinks you need to visit a doctor. I completely agree though, he can be dramatic over the weirdest things...very dramatic!
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Yeah, it said over 10 is problematic. I read his article in the paper. Mostly it has good points, esp about weight loss and stuff. I think anyone on a TV talk-show is going to have to use drama to cater to the audience at times.
 
It was the SIBO test I had, had to breathe into a little gadget over the course of the morning. It was measuring levels of bacteria, so a numbers test so to speak. The special drink you have to have had a prep-like effect on me shall we say. Not got the results yet but they did say halfway through it looked okay.

Think I will ask for those tests. There are several things like crispy potatoes which I used to be okay with, (but things like mash and potato waffles are fine), tortilla chips, grain crackers, some potato chips etc which really upset me. But I am fine with white bread and all other crackers, and alot of potato chips etc. It makes no sense. If it was one ingredient then there would be many more things in those lines I could not eat! Oh and fresh pineapple kills me!
 
Star, I wonder if it could be MSG that's been bothering you? I know that a lot, but not all, potato chips have MSG in them. I've heard others on the forum say that they can't do Chinese food because the MSG kills them and someone mentioned that potato chips also often contain MSG. Sure enough, I started looking at labels, and many (especially the flavored ones) do have that as an ingredient. It doesn't seem to bother me but now that I'm aware of it, I do try to keep my MSG intake to a minimum. That stuff isn't good even for healthy people.

Edited to add: I just looked at the label of my can of Pringles, and it's listed as Monosodium Glutamate on there. So I guess it may be listed as that or just as MSG.
 
Mayflower537 said:
I'm not saying you should or should not do the food testing, but I know that things you're allergic/intolerant to can change over time. I used to get hayfever as a child and teenager, but as an adult I do not. Also, my husband developed a severe shrimp intolerance at about age 25 out of the blue. His sister developed an almost identical problem at around the same age, only broccoli is her enemy. I myself have become intolerant of high amounts of fat in meals (although not the good fats like nuts, and avocados, and stuff like that), and possibly milk gives me issues. That is really recent, the milk thing. Just to throw that out there...
Click to expand...

Hmm, interesting! I didn't know that. I know my allergy to caffeine slowly got better as I got better (I didn't have my first piece of chocolate until I was 13), and now the allergy is getting worse again. It really sucks because I am addicted to Starbucks coffee! >.<

Thanks for pointing that out! I might talk to my doctor about it too.
 
Shan: I am soooo glad they found something. I asked my boyfriend what the doctor gave him for his vomiting episodes and he said it was called threelac just in case you wanted to try it because he said it has helped regulate his bowels.

Cat: I think that is a bit rude that the doctor left you hanging all those days and then calls you out of the blue. I am such a wimp at telling doctors stuff but I am sure you can set him straight ; )

I tried the Dr Oz quiz and at this rate I should be dead:yfaint:
Its funny because Dr. Oz had a quiz not that long ago on stress levels and health and I passed that with flying colors. I had no medical or stress problems and now I am a stressed out and sick person in just two months.

I went to my primary doc who by the way has a lot of experience with chrons disease which is why I chose him. I told him I had a rash on my bottom and that my pelvic bone hurts and that I am convinced I have a fistula. He reassured me that it wasnt and will and do an anascope soon. I hate being prodded down there and I am scared it will be something awful like herpes because it hurts when I walk. I will take herpes though, I will take anything! I also have gained weight and my joint pain is completly gone he saif I have reiters syndrome. It took the shots a couple of days to kick in but when it did I felt great. I have more energy and I actually have an appetite. I really doubt I had some kind of virus as my symptoms just dont match any kind of infection/virus. My stomach hasnt been an issue. I actually have less problems than before all this started because I have changed my diet dramatically. I pray and hope I continue to feel better. My family thinks I am crazy but I am going to go for the pill cam anyway because i need that reassurance. The only weird symptom i am left with is random muscle twictches all over my body. My buttocks in my legs, face, and in my arms. Its soooo irritating. I also got a perscrition for depression and i hope it kicks in soon because I have been pretty down on the dumps- actually very down on the dumps. I havent even answered anyones phone calls and havent even cared about anything lately.

I hope everyone is doing well!
 
I tried taking the Dr. Oz quiz but it wouldn't give me my results. The final page wouldn't load, it just sat on the "we're calculating your results" screen. :( I'm sure I didn't do very well though.

Allie, can I ask what type of allergic reaction you have to caffeine? My mom has a caffeine allergy, she's had it since her early 20s I guess - she told me that she suddenly started getting cysts on her breasts/nipples. Her doctor said it's just cysts, nothing to really worry about, but that she should try giving up caffeine and see if that helps. So she gave up caffeine and the cysts went away. That always freaked me out, I didn't want to have the same reaction so I've always been pretty careful about my caffeine intake. I don't drink any soda nor coffee since I've been ill since caffeine just goes right through me nowadays anyway. Both my mom and I are crazy for chocolate though so that's our one caffeine indulgence.

Dayz, I'm glad you've gotten some relief, but I agree that it's good you're still going to go for the pill cam. Definitely better safe than sorry, and the pill cam is really thorough so it's a good one to have. I'm not familiar with Reiter's syndrome but it's good that your joint pain is gone. With regards to the twitches, are you getting enough fluids? When I get too dehydrated, my hands and feet start to twitch. When I did my colonoscopy prep, I got so dehydrated that my entire arm was twitching and I couldn't stop it (I eventually ended up on IV fluids). And just last week, when I had that bad episode of vomiting and d, I started getting dehydrated and my feet started twitching. I made myself drink a full container of Pedialyte and the twitching stopped. Try drinking more water or an electrolyte drink and see if that helps any (see if you can find something better than Gatorade or Pedialyte, those are unfortunately both full of sugar).
 
Dayz, I think I have brain drain today. I wanted to add that I think we all know the feeling of depression, you're not alone. I've felt less down since I've been on Amitriptyline and have gotten my symptom somewhat under control. Do you know what anti-depressant they're putting you on? I've been on Amitrip and also Trazodone, low doses of each. In low doses they both cause drowsiness, which was good - helps me get a full night's sleep, which I definitely wasn't getting when I wasn't on any meds. Amitriptyline also (supposedly) helps calm the bowels, although I think that effect is more for people with IBS. I haven't really noticed any difference there. The other benefit of Amitrip is that it helps control headaches. I had chronic headaches for awhile as a side effect of Entocort, and I also used to get migraines on about a monthly basis. I've only had one migraine in the past 9 or so months that I've been on Amitrip, and that one was only because my GI changed my dose from 25 mg to 40 (he changed it back to 25 so hopefully no more migraines). Anyway, I hope that helps some, and just wanted to let you know that you're not alone and that there's no shame in taking anti-depressants - a lot of us take them and are glad for them! And it doesn't mean that your symptoms are all in your mind or are a result of depression, so don't let your doctors or family tell you otherwise.
 
Dayz- do you definitely have Reiter's Syndrome, and is this something acute or chronic? Is this something you will have to deal with permantly? I hope you get some relief soon and find out what is causing the twitching. Keep us posted.:hug:

Cat- are you feeling any better? Have you ever gotten a hold of your GI? I just don't have that problem and can't imagine. My GI calls me back within 10-15 minutes of my call, even if he is off work- he sometimes calls me from his home. Good luck and I hope you are better now.

My stomach is killing me today- I guess it is from the endoscopy yesterday. I can't wait to start taking my stomach meds- hope my test results for H-pylori come back soon!! Hope you guys have a great weekend!!!

Thank you everyone who gave me such great advice. I appreciate it!!! :rosette2:
 
Shan, I was initially put on the Hyoscyamine because I was pretty bloated and was having sort of prickly abdominal pains - different from my usual LRQ pain, I think this was more like gas pains. Now that I've been off the Hyo for a bit and the side effects are finally going away, I'm back to about where I was before - still bloated, having some stomach pains, but I can deal with it. Not really nauseous anymore, but don't really have much of an appetite either, so I'm not completely back to my usual self just yet.

I'm sorry to hear that your stomach is hurting so badly, I would imagine maybe it's either irritated from the endoscopy or maybe it's hurting because they took biopsies? I had a lot of pain the day after my colonoscopy and I think it was because they took a lot of biopsies. But I felt better the day after that, so I hope that's the case for you too and you're feeling better soon. Keep us posted on the H pylori results and biopsy results and everything else!
 
Cat-Yeah, I am probably just irrated from my EGD test- I feel like I've been punched in the stomach- very sore and really crampy- but that is OK. I am so happy they found something. I wanted to say, "Ha, in your face" to my GI, but I didn't, I was good. I really had to push him for his test and I'm glad he did it, and also that he knows I wasn't making it up! :ymad:

I know that bloated feeling. After I eat, I look like I am about 5 months pregnant and I feel SO fat- and really crampy. That's even if I just drink chicken broth :eek2: Oh well- I am so sorry you are having problems. I really hope they can figure this out for you- makes me so sad that you are STILL dealing with this and a GI who doesn't seem to care :(

Sometimes I wish we could make them feel as sick as we do, even if it is for just one day :rof: I know that isn't very Christian of me to think like that, but sometimes it's the way I feel. I guess they hear it so much they just become immune to it.
 
Cat: Yeah it could very well be that because i have had several urine tests that show I am dehydrated. I should take in more water. I also found a link between my chest pain and being dehydrated. My doctor wants me to start lexapro as well as amytriptiline at night. I hope it helps because lately ive only been on xanax.

Shan: I looked up reiters syndrome it is supposed to resolve on its own but about 10% of people have it permanetly. I am not sure if I definitley have it but the shot seemed to work. It is so strange because my symptoms match chrons - severe stomach cramping, loose stools, blood, anemic, joint pain, and weight loss- loss of appetite. My doctor wants me to do the pill cam as well and he told me that he wants to rule that out. I am still worried that they are missing something serious and I have always doubted doctors.
Keep us updated on your recovery!:ghug:
 
Cat, that's really interesting about the cysts! When I was a baby my parents gave my some oreos and I actually had a seizure due to the caffeine in the chocolate. They did allergy tests to make sure since they really didn't want it to happen again. I seemed to grow out of it (which they predicted), but it has slowly come back since I got sick. Now I just get really shakey, and I have to be careful because it seems like either my blood sugar goes out of whack or something else, because I get really faint/dizzy a few hours after having caffeine. Eating sugar seems to help. It also makes my tummy issues much worse, esp. the d. I've learned to limit my caffiene intake and if I do have an energy drink or starbucks coffee, its a small, I drink it slowly, and I eat something along with it!

Dayz, I'm glad you are feeling better (except the twitching of course)! Thats great news that it should heal on its own. I hope you continue to feel better and that the pill cam shows that nothing else is wrong, and that you can go back to being healthy!

Shan, I'm sorry you feel so bad! My last upper endoscopy left me feeling that way too. It sucks! :(
 
Well I finally have an update for you all. Not able to get an answer to phone calls so a letter has gone to the complaints service saying I thought to hear something by now.

Heard back from Rheumy today, his view is still we should accept a final diagnosis of IBS after talking to GI. It is not Rheumy's fault he has this view, as he is listening to the "expert". Oh and apparently GI has written to GP to saying it's IBS and suggesting how it might be treated which I am very, very angry about and is news to me. If he thinks it's IBS why then hell did I have more tests after our last consult?? How dare he is all I can say. We did not reach an agreement over a diagnosis in any shape or form. So glad now I have asked to change GI's. I will write to GP to say I dispute this letter, they can put a note on my file.

However Rheumy has now applied for a PET scan (see, I knew I only had a standard CT last time), and will speak to an endocrinologist because over the course of the year and a bit some of my Cortisol tests came back high, some normal etc.

Feel a bit better now I know what the future plans are. As long as there is something next it means that they have not given up on me.

I am also a bit cross since, when my GP left I emailed Rheumy, GI and sent a letter to Patient Records, naming my new one. Guess none of that worked since the letter went to my old one! It won't matter really but it's annoying all the same.
 
Wow, I can't believe your GI convinced your other doctors its IBS. I personally think thats rude and uncalled for! I'm glad you are feeling good about where you are headed though.

All my doctors are connected due to them all being military doctors, but they don't actually take advantage of that and communicate and work as a team to figure me out. The two GP's I have seen both think its crohns, one of them saying "IBS wouldn't cause d 8-12 times a day, is your GI crazy?" (lol), the other giving me pain meds saying "you need this, you are very sick". It still really gets to me that my GI keeps saying "dang this looks like crohns" yet he wont do a pill cam or test pred out for a short time. Hoping I can stand up for myself at my GI and say "look, something is really wrong, and I just seem to be getting worse being a sitting duck. The pain has spread too, which really sucks. I know redoing the colonoscopy wont help me, so I'm really hoping they will do the pill cam and it would show the trouble in my small intestine. The only good part about that SBFT is that he showed me what organs were where my pain is..and it is..you guessed it..a giant mass of small intestine! lol :p

Have any of you guys feel mentally out of whack during a bad flare? The longer this one gets, the more weak and feeling weird I get. This morning when I woke up I felt like my brain had been replaced by cotton balls. ~.~ I was feeling better yesterday and I did a lot of work bc of it, and now I'm regretting it!
 
Shan, have you noticed your bloating getting worse as the day goes on? It seems that when I wake up, my stomach is flat, and as the day progresses it gets more distended and I feel more bloated/fat/full in the evenings. And you said even broth makes it worse - I'm the same! Even drinking water or Ensure seems to bloat me out more. I try to burp and pass gas as often as I can, but I can never seem to get the bloat to go down. Sleeping is the only thing that helps, and I have no idea why that is! I've tried various things, like eating foods that don't produce gas (avoiding beans, eggs, etc) and I've tried eating smaller meals more often as that's supposed to help, but nothing really seems to make a difference. Have you found anything that helps with the bloat?

Allie, your post reminded me - I used to have small seizures as a baby as well! My parents and the doctors never really figured out why it happened, and it went away after a little while. I don't remember it at all, I think it went away by my first birthday, but I guess my jaw would clench and I'd just shake for a little bit. How weird that we both had that kind of thing happening when we were babies, I wonder if there's any connection between that and IBD or autoimmune illnesses!

Star, that's interesting that your cortisol levels are high. Have you ever been checked for Cushing's? I don't know much about it, but I did a little bit of reading up on it when I was being checked for Addison's, because Cushings is kind of the opposite of Addison's - Addison's is too little cortisol and Cushing's is too much, in a nutshell. And if I'm remembering correctly, weight gain or inability to lose weight is another symptom of Cushing's. I believe you said you haven't lost much weight even though you're barely eating and are having a lot of d. You might want to look into Cushing's, it sounds like you've got at least a couple symptoms of it.

I'm doing okay today - nausea gone, but appetite still not back. I went to Subway for lunch, usually I love Subway and can eat it even when I'm not feeling great. But I am having a hard time eating even that. I had Ensure at every meal yesterday and I'm afraid today is shaping up to be similar. I don't like this, I wish I could eat. I'm already feeling full and bloated and it's not even noon yet.
 
Huh, that is weird Cat! It only happened to me the one time (it was scary enough for my parents lol), but I wonder if it is connected.

I'm glad you are feeling better, but I hope you are able to eat soon. Liquid diets are no fun!

I have the same issues with the bloating! I'm the same way, my stomach is flattest in the morning, then as the day goes by, the bigger it gets. I think it gets better overnight because we don't eat for a good long while, and everything gets processed and taken care of. That's my theory anyways, lol. I hate it though because I hate looking pregnant when it is at its worst! >.<
 
Well Cushings was looked into after some of the blood cortisol readings came back high. So I did a 24 hour urine collection, and was told if that was high I would be sent to the endocrinologist. I never heard anything after that so am assuming that one was normal and ruled it out. Then the WBC scan came back positive and seemed to answer things.

And, as far as I know, Cushings does not cause bowel issues.

I honestly don't think there is anything new to test me for!
 
Thanks, Allie. I did eat a normal dinner last night so my appetite is coming back somewhat. I think part of the problem is that I'm super stressed right now. Long story, but basically - my husband is a fan of this one particular series of scifi/fantasy books. He and some other geeks decided to put on a convention for fans of these books and the author. He underestimated the amount of time, work, money and stress that would go into putting on an event like this. He's been incredibly stressed (the convention has been going on this weekend) and I'm stressed too. For one thing, this has essentially been an unpaid full-time job for him for about a year now. He works freelance/part-time... lately he's been doing paid work for only about 3 hours per week! Meanwhile, I'm the ill one and I've been working full time because SOMEBODY has to pay the bills so that we don't lose our house! So I'm really stressed and kind of resentful because of that. He's apologized a million times and says he will get a real, paid full-time job when this is all over with, but for now it's like this weekend is the culmination of a year of stress and financial problems. I hate, hate, hate this convention and I can't wait for it to be over with! Plus, hubby isn't really the guy in charge, he's like 2nd in command and the girl in charge is a massive b****. She doesn't do any work (hubby does most of the work and then she sees all his mistakes and yells at him but doesn't bother to fix them or help), she just stands around and flirts (not with hubby but with pretty much everybody else) and makes dumb comments like, "hold on, I can't do this, remember I'm a girl!" I want to punch her in the face, I really do! Sooo, I think this stuff is a big part of why I have no appetite - just pure stress! I've been having way more stomach pains than usual since this convention started, too. It is over on Monday although hubby still has to help with the clean-up on Tuesday... so Wednesday can't come soon enough for me!

Star, that's frustrating, I didn't realize you'd already been tested for Cushing's and had hit another dead end. I am also not sure if Cushing's can cause bowel symptoms or not - I know that Addison's can, so it seems like it would make sense that Cushing's could as well. I don't know though.
 
CAT: I hope your feeling better. I have been having the bloating since yesterday and again today I hate it! I hope you can get off those ensure shakes soon, I used to drink them all the time to gain weight and now I cant even look at them.

Star: I am so mad they are saying this is IBS. What is a PET scan? I hope that you get answers soon.

went to the emergency room yesterday. I have been feeling like i have a low grade fever for almost a week and this was confirmed when I went to the Drs and m temp was 101. I was like oh my lord that is the first time I actually had proof of something! I knew that i should go to the ER because a fever for a week is not good. I also went to go pee and there was sooo much blood on the toilet I almost fainted. I litteraly felt my legs go numb. The doctor was realy thorough and when I explained my symptoms he asked me right away if I have had a colonscopy I told him yes and it came back normal. He ordered a CT scan immediatley and I was on fluids because i am so dehydrated. I also have low pottasium which I have always had no matter how much bananas I eat. I was really hoping the CT scan would come back normal but at the same time I feel so lost and sick again. It came back normal and when he did the rectal exam it showed external hemmerhoids that have popped. The blood was also on my undies. I never thought hemmerhoids could cause so much pain and blood! I went pee again and there wasnt any blood. I am so sick of this crap! I also had horrible gas pains and was given morphine, I still was in pain and when I came home holey moley I could have filled up an eighteen wheeler with the gas I had. My urine also had alot of bacter and skin tissue and blood! I was like WTF this is just getting better and better. So they stuck a catheter inside of me and let me tell you that was the worst. That urine sample came back fine and they said my original must have been contaminated because the urine caught some blood from the hemmerhoids. The doctor mentioned i might have a salmonella infection that doesent want to leave my body and wants to do a stool sample. So thats my next step. Lately I have been having really bad muscle twitching and ringing in my ears. I am starting to think I have lyme disease. And when I went in they said I didnt have a fever eventhough i feel like i do. They checked again and said I was at 96. I feel like I am going crazy. That stool sample better show something!
 
Sorry to hear things are so rough for you :(

From what I can tell, a PET scan involves an injection of radioactive glucose which will then be attracted to areas of inflammation/tissue changes. So similar to the WBC scan I had which came back positive. It's like a super detailed CT/MRI I think, not quite sure. Hope I get it, I bloody better!!
 
I looked it up and it sounds like a good test. I hope you get it too. Why havent they done the pill cam. I saw in your signature that they booked it and then pulled it. I thought I was going to have to beg for mine but they gave it to me pretty quickly.

If the pill cam or Pet scan came back normal would you still pursue testing?

I pray that we all get better- aww how I remember those healthy days:frown:

Update: I dont have a fever anymore:thumleft: but my hemmerhoids are causing me pain :mad2: I have to do a sitz bath and stick a suppository up there. No more joint pain and no stomach pain. I feel really weak but thankful I dont have the twitching anymore. My immune system is going crazy I think those damn chickens in m backyard are making me so sick because they are all sickly looking hmmm
 
Oh my goodness dayz, what an ordeal! I am so sorry! :( At first my thoughts were, "great, the doctors see something is wrong, maybe her mystery is finally solved"...that really sucks that the hemmeroids caused all of that. Did they cause the fever as well? I have one external hemmeroid that has enlarged significantly over the past two weeks, but I have been flaring really badly. I can't imagine how much it would hurt for it to pop. :( I hope you get some rest and recover!

Cat, thats crazy with your husband! I haven't been working since I got this sick a year ago (I was working at PetSmart, and when they misdiagnosed me with a hernia we thought it was from the hard labor I was doing there). I completely understand wanting to pursue your hobbies, but IMO there has to be a balance. Now that the convention's over maybe things will calm down!

I had the WORST night last night. As my hubby and I were going to bed I starting having ripping/stabbing pains in my lower abdomen, the kind of pains that make me know that I am going to have awful D. Well, I fought through it and tried to go to sleep because I was determined to have a productive day today. I woke up about thirty minutes later with worse pain and awful gurgerly noises from my stomach. I tried to go to the bathroom, and all I passed was gas! I was so upset because I knew that wasn't what was causing the pain. I ended up having to try for 2.5 hours, then finally went. I figured out that the day prior I had taken tramadol and hadn't drank much, which causes constipation/dry stools. So basicaly I had a partial blockage from that, so my D couldn't pass, and my body freaked out and I was in the worst pain. I woke my husband up about an hour through in a panic and he got up, gave me a tramadol for the pain (which I didn't want to take because I can't sleep on it), and then we talked and decided I would go to the ER or the clinic in the morning if the pain continues and I still can't pass anything. Thank god I was patient and kept trying. I went back to bed and woke up 2 hours later, and had to run back to the bathroom. Now its 6am and I have almost pulled an allnighter. Yuck! I'm determined to still be productive today, but my hopes for it are very low. :(
 
Allie: :rosette2: for you! Your a fighter and i know you will get through this one! Like Cat says we have to keep telling ourselves "Iam a touch chick!" I say this to myself when the pain comes. I hope your day is productive and that you kick this flare ups butt!

Hemmerhoids are no joke when the doctor saw how much blood I had in my underwear he told me that these were the worst hemorrhoids he had seen in a young person.
 
Dayz, basically someone at the Hospital screwed up. They booked me in for the test without getting the funding permission. Then when the No answer came back they had to cancel it. As it is expensive it needs approval by the Primary Care Trust (which I explained about in this thread), and they will only fund if the patient is aneamic through a suspected small bowel bleed or biopsies from a scope come back positive for CD. Even though CD is a disease that is not a "check list" of signs and symptoms so to speak. I think we all know that on here lol! Even my useless (soon to be ex) GI said it was a shame I couldn't have it.

If I got a Pill Cam (which is unlikely but I am going to try again for a special exception in a couple of months if no further), to me it would be the most definitive test I could get. If it came back clear, the testing and my mindset would then switch to auto-immune problems. Also I can't help but be reminded of the people on here who have had all the tests come back normal, then the Pill Cam which found CD, so all the other tests missed it.

If the PET scan comes back negative I don't know what to do. Still not keen on the immunosuppressant trial which is the only other option currently. All i know is that I can't stay in this state for much longer. But what the answer is I don't!

Upper endoscopy tomorrow and i'm terrified :( And to add to everything my period is really playing up, one of those bad ones we all get now and then. When I got the appointment I thought "well, 5/6 days in, i'll be fine". I just would rather not have to deal with that on top.
 
aww thanks Dayz ^.^. I never feel like I really stand up to this stuff, but this flare has gotten so long that my brain is starting to go mad from not being able to do much physically. I bet those hemmeroids were some of the worse, they sound awful!

Star, good luck on your upper endoscopy tomorrow! I hope they see or get biopsies that show whats wrong. Don't be scared, they give you great meds! :p I understand what you mean with the pill cam...I think I am also one of the ones that would get diagnosed if they hadn't decided I was a waste of money. ~.~ Hoping my new GI will try a different route than "here are some antidepressants, lets see what happens". >.<

I tried eating solid food a little while ago, and that was the worst idea...not even twenty minutes later, it came right back out, covered in blood/ fleshy looking stuff. Not fun. So it looks like ensure for me for at least the rest of the day. I also don't want to go out (I was going to run some errands and go to a coffee shop and study) because I am afraid I will be running for a public bathroom...and if I'm not on base, they don't exist. If they do exist, you have to pay to use them...even in Mcdonalds! Not an IBD/IBS friendly country at all!
 

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