Undiagnosed Club Support Group

Crohn's Disease Forum

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ChronsMom: I hope you get answers soon! How can something that hides so well cause sooo much pain? Have you done the pill cam?

Cat: Thanks, I actually had a little bump in the road today my stomach was hurting and when I went to the bathroom I just saw some mucus. I talked to my dad and he often gets this as well (has IBS) I have inherited a lot of his genes including this. My stomach was cramping so bad I thought I really have to use the bathroom and thought for sure I was going to have the big D and my stool was perfectly normal it didnt evenhave mucus. My body is so weird how the hell does that happen. I havent had diahhrea for over two months but I still get stomach pain. I have no idea what the heck is going on. I drank some fiber and it seemed to calm everything down. My hands are also aching. I told my doc about my fibro suspicion and he agreed ut said he wouldnt put the label of fibro because then i would be stuck on the fact that I have a chronic illness and instead told me that I should recover in a very short amount of time. I NEED an answer. I know most definilty I have IBS or something because my stomach acts up but I dont have Constipation or Diahhrhea and I rarely have gas. So what the hell is going on? I heard a lot of people with fibro have digestive issues but I just feel like I still need to pursue testing for chrons as well. I am so confused :confused2:

How are you doing Cat? I hope your doing good.

Nenet: I have never heard of that test I am going to look it up. I hope you get some answers!
 
I've had that just mucus thing before, is weird, someone on here described it as a "butt sneeze" which I thought was just perfect!.

Complaints service has by my reckoning until 2nd/3rd August to get back to me so a little while yet. I'll get a load of waffle, but as long as I get an independent case review and another GI I am not bothered.

Mum pointed one good thing about GI letter to GP which I hadn't thought of- they've now dx'ed me twice with IBS. When they finally figure out what is really wrong- all the worse for them, missing it not once but twice, and the second time round with many more red flag symptoms.

Had another painful flare last night, after a dinner of fishcakes and potato waffles, i'm beginning to wonder if I am cealic after all?! Also had a BM during which had the usual black bits, indicating blood. *sigh*
 
Hi, everyone! I found this last night, and thought of our undxed club here.

http://www.behcets.com/site/pp.aspx?c=bhJIJSOCJrH&b=260548

http://www.mayoclinic.com/health/behcets-disease/DS00822

There was a lady on another forum who had the results for her Prometheus IBD Serology test come back consistent with Crohn's (at least once, maybe twice), but this is what she ended up having. That's what piqued my curiosity. I don't think it fits in my case, but for those of you who are plagued with the mouth sores, that seems to be a big symptom for this.
 
Mayflower~ that is great info.. that is what my sores are like.. but i don't have any of the other symptoms.. but i will tuck that little fact away in the back of the brain if any other symptoms appear.. thanks for sharing!!!
 
Thanks for sharing Mayflower! Those sores are exactly what I get. The first link, the picture of the sore on the tongue is exactly what I had on my toungue, and it eventually ate through my tongue. YUCK!

I am going to see how this pill cam goes, but I am definitively going to keep this in mind.

Tracy, I'm glad your procedure went well!

Net, good luck with your ring procedure!

Omaklackey, welcome to the club. I had the same thing happen to me, my SBFT was too normal so they cancelled my pill cam a few months ago. I kept going to my GI month after month, showing him symptoms, gaining his trust, and he eventually went over my case in detail and decided to do the pill cam. I've found patience and a good caring GI really help when the tests don't show whats wrong. Don't give up!!

I'm starting to get really nervous about the pill cam! Not the test itself but what will happen because of it. I really didn't expect it, and they are urgent about it, so I'm wondering if it will change my plans. I think I might end up having to cancel my plans to go back to school because I will have a hard time with healthcare there. If the pill cam results in crohns (which is the best situation) I will have to figure out how to get treatment. I really wish this had happened months ago! >.<
 
Allie...is it possible that if your pill cam comes back showing CD, can you talk with your GI and discuss him prescribing 3 months worth of meds to take with you? This is about the length of time they like to give the meds to "kick in" anyhow? And then at least you have the meds with you for the states. Then if there were any "emergencies" you could always go the ER route ?
Just a thought :)
I sure hope the pill cam finally gives you some answers !
 
Yeah, the fun part is my flight is scheduled for 10 days after the test, and I know the results take about two weeks. My GI is military and he has to go somewhere the week I leave too..and I know he is the one who looks at the results, so again, I don't think I will get them very fast. He rushed me out of his office so fast last appt I didn't get it figured out with him, so I'm hoping he will either give the results to my husband or give them to me over the phone. If they are normal I will let off this for four months, and if they show crohns I am either hoping to get treated by a military doc in Atlanta, or yeah, I will go to the ER and say I have crohns and I need treatment. I think the only reason I am worried is because my GI didn't figure this out before and there are so many possibilities of how this could go!
 
Allie~ good luck.. i hope you can get results in time.. maybe if you call and give instructions on where to call you once the results come in.. i'm sure you already know this, but being in the health care industry, make sure your husband has permission with them to get test results.. they usually want something in writing due to hipaa laws!!

So on a lighter note~ i am engaged to be married. my oldest son is in the air force and is stationed in hawaii. we decided that sept 2012 we are gonna go visit him and get married while we are there. we are keeping things simple since the trip itself is going to be a pretty big expense.. long story short.. i found a dress i want to buy, it is perfect! the problem is, i have to order it by labor day this year as it will be going out of stock.. the problem is, i am currently a size 10 (down from a 14) and have lost 20lbs since january. i have no idea what size to order!! it is a whole year away!! it is a simple dress and pretty reasonably priced at $148... the lady at the dress shop said it would be easy to take in if i lost more weight because of the style.. i'm thinking ordering a size 8... any suggestions??

anyways.. hope you all have a great weekend and can destress a little!
 
Netnet- are you trying to lose weight or are you worried about the size because you are sick and you are inticipating losing more weight because of that? :frown: I am thinking maybe a size 10- you can always have more taken out but you can't always have material put in. That is my opinion. Congrats on your engagement!!! :ybiggrin: I lost my boyfriend of two years just last month because of my stupid illness :yfrown: It is nice to see that you are happy despite your illness. I hope to find a boyfriend who will love me despite my sweaty pajamas and the vomit in my hair:ytongue: Hehe.
 
Hi all,

i have only found this site today, and allie (thank you) told me about the undiagnosed club so thought id paste my story on to here.....

"I'm a newbie been reading lots of posts and although i got to the point about a month ago of complete frustration i've calmed down a bit now and just accepting that im getting nowhere fast, but despereatley want a diagnosis...

Over the last 10 years been told I have IBS linked to anxiety and stress and suffered from periods (although) short of diarrhoea then at the end of February 2011 I started with abdominal cramps, pain, diarrhoea, very swollen stomach after eating etc.

March went to see doctor - possibly celiac, stop eating wheat gluten, take Imodium, blood test, possibly IBS. Imodium did nothing, nor buscopan or not eating wheat. Blood test negative for celiac vvUrgency to go to the toilet getting worse, watery, extreme pain, swelling, started losing lots of weight, fatigue, vomiting, aching.

Went to and fro to the doctors had lots of blood tests to confirm no infection possibly ME, IBS, referral made to gastrointestinal consultant for colonoscopy - possibly IBD. Prescribed Lansasoprole for Gastro Oesophageal Reflux which got better with that medication.

22nd March went sick from work

All symptoms getting worse, lost around 2 stone in weight, struggled to eat anything

3rd April - admitted to Stafford Hospital for one week

Suspected IBD
Battery of blood tests
Normal abdominal x-ray
Kidney and Liver function normal
Low ESR
Very low B12 and B
Endoscopy normal and Colonoscopy normal
Biopsies taken

Given Morphine, Gaviscon, Buscopan, Imodium and referred for Barium Follow Through test and Ultrasound and discharged.

Got very depressed, anxious

April - Ultrasound

May - Barium Follow Through

15th May went back to work for 3 to 4 hours a day

9th June - results from colonic biopsies would diagnose Collagenous colitis, however, results from barium follow through not normal and would diagnose Crohn’s disease near the terminal ileum (indicative of separation of loops of the bowel and thickening near the terminal ileum although not seen on colonoscopy)

Referred for Barium Capsule for clarification of previous results

Prescribed Mesasaline which had no effect

16th June Prescribed Prednisolone which has had effect BM now only 3 - 4 a day and much more solid. till suffering from some previous symptoms and suffering from side effects of the preds - anxiety, nervousness, unable to sleep, manic, yet tired

Saw Occupational Health at work Ms Byrne at HMP Stafford, started going through history and broke down

24th June - went sick from work sleep deprived etc due to side effects of steroids prescribed diazepam at night to sleep

21st July - Pill Cam Capsule Endoscopy - waiting results

Diazepam has made me dead depressed and cry loads so just come off that and really had enough but going back to work in three weeks, sorry to go on and so much detail but becoming so obsessed with it all and frustrated!!!!


Any help/advice???????????????? Please!!! "
 
Just to let you know in case you have this specific thread bookmarked, there is now an "Undiagnosed Club" subforum this thread is a part of. You're all welcome to start your own personal threads in here or continue to post in this mega thread. It's up to you :)

Cat-a-Tonic has also been kind enough to accept the position of Forum Monitor of the new Undiagnosed Club. :thumleft:
 
Hi Vic, welcome to the club and I'm sorry to hear you've been suffering for so long. Your story sounds similar to mine - I definitely don't have celiac, I have dealt with a lot of depression over the course of my illness, and I also respond well to prednisone. My doctor told me that you don't respond to pred unless there's something inflammatory there for it to work on - so IBS wouldn't respond to pred, but Crohn's or colitis would. How long were you on pred? And what dosage were you on? Were you on it during the time that you had the pill cam?

You asked for advice - for now, my advice is to be patient. It can take about a month to get the results from the pill cam, so you probably won't hear back on that for a few more weeks. In the meantime, and I know this is much easier said than done, but try not to be too anxious or stressed. Stress can have a very bad effect on those of us with this type of illness, it tends to make our symptoms much worse, as you've most likely noticed! Do what you can to try to de-stress. I do deep-breathing and yoga to relieve stress, and sometimes even something simple like a long hot bath can be wonderful and relaxing too.

Good luck with the pill cam results. Please keep us posted. I hope you get some answers and can move forward with treatment and get some relief! And again, welcome. :)
 
I hope everyone is having a good weekend! I am off to Paris until friday, so i wont be on here much. I hope everyone has a good problem-free week!
 
The in-limbo part is the most frustrating thing ever
They finally came to the conclusion that I have ibdu - inflammatory bowel disease undetermined, ie. is it crohns or ulcerative colitis?
So annoying because it means a lot of trial medications and more testing so they can hopefully come to what seems to be an unreachable conclusion!
 
So, which one is the hardest?

Waiting to hear if you've been granted a test.
Waiting for said test once you have a date.
Waiting for results afterwards.

I am in 1 and 3 at the moment, I think 3 is the hardest right now!
 
Thanks guys on the congrats.. we have been together for 6yrs and engaged for 1yr.. he is very understanding but it can frustrate him sometimes.. it's hard when you can't help someone you love feel better!!

Shan~ i have been losing weight due to being sick... i am a stress eater.. before i was dx with Gastroperisis, when i would have really bad days i would stuff the bad feelings with sugary treats.. like cookies and cakes.. the more i had diarrhea, the more i had to refill by body!! i had gained 30+ lbs over a 4yr period.. since i have been dx i have been on a low fat, low fiber diet and have lost 20lbs since january.. i am 5ft tall and am currently weighing 153lbs (my high was 173lbs) it is awesome to be losing weight.. just wish it was under different circumstances.. i can't see myself ever being able to eat what i want cause it is rarely a curable condition... but who knows what the next year will bring.. i am debating between a size 10 and a size 8.. (and in all honesty, i would like to be in a size 6-8 for the wedding!!) :)
 
Hey everyone,
today has been one of those bad tummy days. :(

I feel exhausted, weak, and just really really weird. It's a strange feeling, like everything feels like jello. Going to try to eat something, but not sure how well that's going to help.

*Star- I totally understand! I think waiting for the results is the hardest! and of course waiting to get the tests done, because you're anxious and just wanna know if they can find something!

Hope everyone is doing well. <3
 
Star, that's an excellent question. Personally, I definitely think it's hardest waiting for a test result. I go back and forth in between hopeful (optimistic) and depressed (pessimistic or maybe just realistic!) while waiting for results. While waiting to have a test, I get jitters (especially if there is prep involved) but it's worse knowing that I did everything I could during the test and being worried that it'll still come back normal.

Allie, have fun in Paris! How cool it must be to live in Europe and take trips like that, didn't you just go to London a little while ago? I hope your health behaves and allows you to enjoy your trip to the fullest!

NetNet, congrats!! Very exciting! I got married in September too, it's a great month to get married. Not too hot but not cold out yet either. As far as the dress size goes, I agree with Shan, you can always take it in if it's too big, but there's not a whole lot you can do if it's too small. Who knows what your size will be a year from now, so you may just want to wait a little bit longer before buying the dress. I think I ordered my dress about 4 months before I got married, that way I was pretty sure my size wasn't going to change (that was years before I got sick anyway, so my weight didn't really fluctuate much back then). Anyway, congrats! Hawaii sounds like an awesome place to tie the knot! :)

CLF, welcome to the club. I'm glad you've got at least a partial diagnosis. My aunt (by marriage) has also been diagnosed with indeterminate IBD. What medications have they tried putting you on so far? Are you currently on something that works, or are you still looking for the right treatment?

Sunshine, sorry to hear you're having a bad day. :( If you're not sure about eating something solid, how about trying one of those Ensure or Boost type drinks? If you're going to eat something solid, do something bland and easy to digest. The BRAT diet is something I frequently do when I'm feeling really crappy. It stands for bananas, rice, applesauce, toast. Good luck with whatever you decide to eat, and I hope you have a better day tomorrow!

As for me, I'm doing well. Feeling a lot better since I've been off of the antibiotics that I was on for a UTI. Even though I was taking probiotics with the antibiotics, it still really upset my guts and I had a lot of cramping and some nausea. The last day of antibiotics was Thursday and I'm feeling pretty much back to my normal self today. Appetite is back, no more cramps (due to get my period soon though so I'm sure the cramps will be back in a day or two!). Had a really good day today, hubby took me to the farmer's market, bought me flowers, we went to a movie, then we cleaned our house - I actually had enough spoons to do all that! I have a headache now but otherwise am feeling pretty well.
 
Cat- Thanks! I ate some toast and was feeling better. :) Not feeling as run down as I was earlier. thank goodness! Thanks for the advice about what to eat! Also, Glad you are feeling better, and you had some energy to go to a movie and hangout with the hubby! :) That's so exciting!

Having my colonoscopy done a week from Monday!! (anxious, nervous, hopeful,etc.)
 
Sunshine, good luck for your scope, and more importantly, your prep!

Had a letter from GI in response to complaint. Tests were done to rule out CD and not confirm IBS as I suspected.

As of 25th May bizarrely my CRP was 11 so normal. But he ignored a reading of 36 since it was a one-off and went back to 20's, which I agreed with, so no reason why this one can't be discounted also. Since I think years of it being raised every single time counts for something! Had it done again last week anyway.

Amylase came back high (don't know when, possibly A&E visit?) after being normal in the past so he's asked GP to do a feceal elastase to rule out pancreas problems (not heard anything from them, he could have sent me a test envelope surely!). I see the pancreas joins the small bowel so maybe something there? But more likely, if this was the A&E visit, it was something do to with the horrid pain I had then, like maybe the organ was irritated on that occasion, which would not surprise me.

Bacteria test came back normal so Small Bowel Bacteria Overgrowth has been ruled out. Still think specific bacteria testing might be worth pursuing.

Oh and he's discharged me back to Rheumy, so nice of him to meet with me and explain this!

Had a horrible painful flare again last night. Told myself if I wasn't asleep by 2am, then 1:30 am, I would wake Mum and go to A&E. But I slept and woke up with no pain anywhere which was such a relief. But since waking up it's come back, better than earlier but worse than it is on a normal day :( I am so sick of this, really I am. Last one was a few days ago.

Going to have a nap and see if I can then get up and on with my day- don't want to do much, just a shower/ hair wash, post my rental dvd back and a little game time on the PC downstairs!

See Rheumy on the 12th September and pain management has come thorugh for the 15th. May change the latter as afternoons are better and Hospital twice in one week is not only really tiring it is expensive in terms of travel now I can't use the bus as often as I used to be able to.
 
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Well I did nap for about 10 minutes until i was woken by the phone lol, seeing a new GI on the 22nd August. So now not sure who to contact about biopsy results, old or new GI. If I waited for it to go to the right person and their secretary to write to GP, that would be a long time, longer than I want to wait. Last time I phoned to see if they were in and had them faxed there and then to GP. Even if it's a normal result I want to find out asap. And if it goes to GP I have no way of knowing when that has happened without calling them several times, which can be a hassle getting someone to answer (and if it's normal they won't contact me). Will have to have a good think about that one!

I really don't want to wait until I see new GI for them but I might have to it seems.
 
star and sunshine~ i hope your week goes better.. i am back to work this week.. we will see how it goes.. it's an never ending circle for me.. i stress myself out over my circumstances and then it gets even worse than it was.. then i am off a few days, can relax a little and then i start to get some relief.. i reallly miss normal food!! gonna get tired of a soft and liquid diet!! oh well, gotta do what you gotta do!!

ttys!!
 
Star- Thanks! I'm nervous about the prep for the colonoscopy, because 2 years ago when I did the prep, I ended up throwing up. But that was before I knew I had chronic gastritis. So I'm hoping since i have been on medicine to help the gastritis that maybe my stomach won't be as sensitive to the prep! Sorry you haven't been feeling well, I hope your day gets better!

NetNet- Good luck with work this week! I can't imagine the stress you're under going to work with stomach pain. You're very strong to be able to get through it, and keep up with the good work on your soft & liquid diet! It's hard to not get tired of eating soft foods or liquid, because of course when you're doing liquid diet, a commercial comes on TV and shows a big juicy burger or something, and you're like wow, great! Wish I could eat that!
 
Star, Im sorry you arent feeling too well. I hope the new gi helps you get in the right direction. How long do your flares usually last? I hope you start to feel better soon!

Cat, that sounds like an awesome day! :) yeah we are very lucky to get to go all over Europe! We took a train here from our home in Germany and we ended up going through brussels, and that was cool too. I hope your time of the month doesnt make you feel too bad!

Sunshine, good luck with your scope! Remember, the prep is the worst part. The procedure itself is a breeze!

Jeannette, i hope you feel better soon! Stress always makes my symptoms worse so i completely understand.

Paris has been great so far. :) Health wise I did terrible at the beginning, but it is getting somewhat better. I am still in full flare, so we are having to take that into account. I was flaring during London too though, and every night we wouls get to the hotel and i would immediatly fall asleep from exhaustion. Yesterday morning when we were getting ready to leave my guts decided i would need to stay in the bathroom, so that wasnt fun. We were on a train most of the day so I had d several times there (which sucks) and then when i got to the hotel. This was after taking tramadol, and that usually stops me up. My pain is right under my left rib, and lately when i am in a full flare it feels like my ribs are bothering whats in pain, like my small intestine is inflamed and against my rib bc there is no room. So weird! Im eating an unrestricted diet to help with the pill cam, and tonight i had a real french meal: raw beef with a salad and fries. It was basically a raw hamburger pattie. Surprisingly it wasnt bad! Still wondering how my intestines will take it though!
 
Glad you've had a nice trip, must be nice to get right away from things.

The painful flares usually last a few hours but sometimes more. Usually they are so painful I go to bed because I can't focus on anything else. It's no fun on top of my normal symptoms! Never had 2 so close together before.

If new GI helps then that is good, but honestly the more I think about it, the more I would be happy under Rheumy only, he is wonderful.
 
Allie, I've never had d on a train, but back in April I did on an airplane, and you're right - it's definitely not fun to be in a moving vehicle like that and have to run to the bathroom! The flight was VERY turbulent too, so I was holding myself onto the seat for dear life and there were a number of times when I was afraid I'd be barfing (I get bad motion sickness) and have d at the same time. Fortuntately the Zofran kicked in pretty quickly and took just enough edge off of the nausea that I didn't vomit, but it was really miserable. I just wanted off that damn plane! So I feel for you! I hope the raw hamburger (you are SO brave to even attempt to eat that!) is easy on your tummy. With regards to the rib pain, have you ever been checked for costochondritis? I believe David and Crohn's Mom have both mentioned that they have it, and I sometimes wonder if I have it too. I get pain in the left ribcage, although I can't tell if it's under my ribs or if it's the ribs themselves that are painful. Costochondritis is inflammation in or around the ribs, sternum or ribcage - I don't know that much about it but if you google it I'm sure you'll get better info than I can give. Anyway, just thought I'd mention that as it's something I'd recently found out about. My usual gut pain is in the LRQ but I do get rib pain in the upper left sometimes too, not sure if the two are related or not.

Star, is the GI's response the end result of the complaint process, or is there more that's going to happen with that besides him responding to the complaint? It sounds like he just gave you a cop-out response (and he still sounds like a huge jerk!). I hope the new GI is so much better! And in the meantime, I hope your GP or rheumy can get you the biopsy and CRP results sooner than your GI appointment. A month is a long time to wait for results! And how odd that your CRP went down to 11 when you're still obviously not feeling well! The past two times my CRP was done, it was 17 and then 10. So a bit high and then normal. Hopefully that means I am indeed heading toward remission, although clearly that's not the case with you so that's puzzling. I agree, if your old GI can ignore a high CRP, then you are definitely allowed to ignore a low one! As far as I'm concerned, you are absolutely allowed to ignore ALL normal test results - after all, you know your body and you know you're not well, so normal test results should be the ones to ignore!

NetNet, good luck with going back to work! May I ask, what kind of a job do you have? Hopefully it's something where you can take a lot of breaks if you need to and you're not on your feet all day or not doing a lot of physical labor. I work an office job which seems to be pretty ideal for someone with this type of illness. I can use the bathroom when I need to, I sit all day and don't do anything strenuous, and there usually isn't a ton of stress involved. I hope you are able to ease back into working and that it doesn't stress your tummy too much!

Sunshine, what prep are you doing for your upcoming colonoscopy? If you don't already have a prescription for anti-nausea meds such as Zofran, you may want to ask your doctor for something like that. I was told I could take as much Zofran as I needed when I did c-scope prep. I vomited the first time I did prep (I had no Zofran then) and the second time I didn't vomit (I took probably 5 or 6 Zofrans then!). I did the Gatorade and Miralax prep both times, although I wouldn't recommend that one if you're at all prone to dehydration. I am very prone to dehydration, and although the Gatorade & Miralax was pretty easy to get down, it made me very dehydrated both times I did it and I ended up on IV fluids both times. If you're not prone to dehydration, Gatorade & Miralax is much more palatable than most of the other preps out there so you might want to check with your doctor and see if that one would be acceptable (if so, they should be able to send you the instructions for it). Good luck, I hope this prep goes smoothly for you with no vomiting (and no dehydration either). Keep us posted!

I found out some semi-exciting news. I've probably already mentioned that my best friend is a diagnosed crohnie. She and I often discuss our meds, symptoms, frustrations, etc. I recently found out that a girl I recently became acquainted with, who has UC (and 4 or 5 other autoimmune illnesses) is moving to my city very soon. So I'm going to try to put together a small informal IBD support group with my friend and my acquaintance. Wish me luck! My bestie and my new acquaintance haven't formally met yet so I'm hoping we all become friends. The new acquaintance is going through a divorce which is the reason for her move, and she doesn't know a lot of people here, so I'm going to do my best to be supportive, and that's when I got the idea of a little support group. So, here's hoping that everything goes smoothly and we all get along!
 
Cat- Yes I have Zofran as well for nausea! Last time I didn't have ANY nausea medicine, so this time Zofran should kick in and help with that. I will be on the Miralax prep. I'm glad it doesn't have a taste to it! Last time it didn't have a taste to it but then i threw it up, so i had to take this awful tasting lemon stuff! eww! Glad I don't have to do that this time, thank goodness!

By the way, i was doing the gluten free diet to see if it was helping because he saw some irritation in my small intestine, and thought maybe it was from celiac. BUT, i feel like it has actually made me worse! I went back to eating things with gluten like bread, and I still was bloated but I didn't have the urge to race to the restroom. So, I don't believe it's celiac.

Does anyone find it very frustrating when you eat if your out with your friends or something, and then your in the car ride home, and the urge to use the restroom is like IMMEDIATE, there is NO warning signs, it's just like BAM! you better get to the restroom ASAP! It's soo scary! My boyfriend feels so bad when that happens (which is like everyday) and he's like I don't like that your tummy doesn't give you any warning. He's usually driving, so he'll be going faster just to get me to the nearest bathroom. It's crazy! But i'm so happy that he understands what's happening with me.
 
OH! and it's weird, it doesnt matter what I eat, it irritates my stomach. I could eat something one day and it's ok, and then if i eat it the next day its like a nightmare. There's not really a pattern to why my stomach gets diarrhea... :/ Not fair. Is that how everyone else is too????
 
Cat~ i too have a desk job.. however, it is a call center environment so i wear a headset and answer phone calls.. so it is not a strenuous job, but it can get very stressful when i start to get twinges and can't get off of my call to run to the restroom! i do not sell anything as it's with an dental insurance company. so i answer claims and eligibility questions. but you are timed on your calls and your production counts towards your reviews and everytime i have to stop to run, it hurts my production.

Thanks for all the positive thoughts today... i am sooooo very tired.. started with the D around 9:30am... luckily it only lasted till around 1pm... then my stomach bloated and i had to sit with my pants unbuttoned the rest of the day! i hate that my clothes can be loose when i leave for work and not fit my waist when i come home!! didn't take enough to eat today.. need to take some soup for lunch i guess. not a big fan of soup in the summer... tomorrow i go for my xrays to see if the rings are still in my system.. kinda hoping they still are cause then i will get some response from people.. but it isn't the right kind i want.. as they told me it could mean surgery and a "bag" if they are still in there! also wondering if i will give a false negative because you are not allowed to take any kind of miralax or anything that helps your digestive system and on wednesday i was still taking miralax and had some side effects for it on thursday when they started the test.. hoping my stomach kept the pill in it long enough to let the miralax get out of my system.. but we will see.. i vote that the waiting for results is the hardest part.. cause you never know when you should call the dr to get them or if they are going to let you know..

Sunshine~ i don't get D soon after i eat cause of the gastroperisis.. it takes a long time for the food to pass thru my stomach.. at least 12hrs and sometimes 24hrs... but as soon as it does, it seems to pass quickly and i have very little warning for needing a bathroom! and it is very stressful.. i know where all the bathrooms are no matter where i go and is usually the first thing i do when i get there!!! you are definitely not alone!!!!!

Cat~ good news on the support group... i often think about starting a blog or a local group cause there are sooo many ppl out there that suffer in silence!!! best of luck and have fun with it!!!

Allie~ try to relax and enjoy your trip!!! must be awesome to travel europe! my ex was in the army for 4yrs and the only place we went was to oklahoma! lol be safe with your eating!! don't want you to get tooo sick.. that isn't good either!
 
Hi Cat, yes that is quite bizarre about my CRP, but then I suppose there will be a bilp from time to time, after 5 years of it being high every time I am not too worried about it.

I've gotten a new GI which is one thing I asked for in the complaint, the other thing was an independent review, of which I haven't heard anything yet.

Going to GP tomorrow to pick up stool test forms, not sure when it'll go back for testing as samples need to be at the Surgery by 10am to go that day. So may be Thursday or Friday it's taken back by Mum on her way to work (I can't do it this time for various reasons), depending on the *ahem* timing of production.

I've also figured out I should contact new GI about biopsy results, and say something like "Dr y ordered but he's discharged me and now I am your patient". Will be another 2 weeks at least before they get back though, they take so long in the UK.
 
Sunshine, sorry to hear that going gluten-free didn't work for you, but at least now you know it's definitely not celiac. What foods were you eating in place of gluten, were you doing a lot of corn? From what I've read, a lot of crohnies can't handle corn. It's hard to digest even for healthy people (comes out looking the same as when it went in!). Unfortunately corn seems to be one of the most common wheat replacements in GF diets but to me corn is harder to handle than wheat! I've never had a problem with gluten thankfully, I don't think I could go gluten-free if I tried.

NetNet, I used to work in a couple different call centers so I understand completely that kind of stress! It's not terribly stressful but there's definitely pressure involved to answer a lot of calls and to meet your targets. And I also totally understand the pants fitting in the morning but not in the evening thing! I get bloated throughout the course of most days too. I start out with a flat stomach and I gradually bloat out more and more every time I eat or drink anything. As soon as I get home from work I put on my loose comfy sweatpants! I've tried stuff like Tums and drinking water with a teaspoon of baking soda in it, as those things are supposed to reduce bloat, but those don't seem to do much for me. I'm currently trying to cut down on my sodium intake to see if that helps, although I'm being careful about it because I have a bit of a sodium deficiency (although the last time I had my blood work done, my sodium was finally up in the normal range). Let us know if you figure out anything to help reduce the bloating!
 
Cat, Yeah a lot of the stuff I was replacing was corn! Hmmm, that's very interesting. Im curious though, because if it's not celiac then what would be causing my small intestine to show up with some irritation? But it can't be celiac because it didn't help at all, it kinda made it worse! So maybe it's a sign of something else. My gastro doctor said I had a little inflammation in my sigmoid colon when I did my sigmoidoscopy but sent the biopsies off and it was fine. So, hopefully when I do the colonoscopy they can see something, instead of my body showing nothing!

But, I have realized that 2 years ago when i had a colonoscopy (they didn't check ileum) and I had my endoscopy, the dr didn't find ANYTHING. but this time, I was diagnosed with Gastritis, and now he's seeing some irritation in the small intestine, and a little inflammation in the sigmoid colon.. so things are slowly showing up, so I hope things will show up in my terminal ileum for the dr on monday. *crosses fingers!
 
Star, I seemed to miss your post entirely when I wrote my previous post earlier. I seem to be missing a lot of posts lately! Wish I had pred brain or something like that that I could blame it on - I think I must be going senile or something. Anyway, good luck with the stool samples. I remember when I did stool samples (and I did 5 or 6 of them), I was thinking that this has GOT to be the easiest test ever! If there's one thing I can do reliably, it's poo! Ha ha. So hopefully "production", as you put it, will be an easy task for you as well. ;) Good luck too with the biopsy results, I hope the new GI can get them to you relatively quickly. Here in the US I think it takes about a week, but you said it takes longer there in the UK. But you've already been waiting awhile, so hopefully soon? I know we already discussed this both here and in the other thread, but waiting for results is the worst in my opinion! I feel for you and I hope you get them back very soon (and of course I hope that they reveal something useful, which isn't ignored by your doctors!).

Sunshine, if you have something like Crohn's then what you've said would make sense. There might not have been enough inflammation/damage (it wasn't severe enough, or you hadn't been ill long enough) to show up on your first c-scope, but of course left untreated it will eventually worsen and inflammation will become more obvious. And you said they already found gastritis, so that's certainly a sign that things are worse now than they were a couple of years ago. Not that it's good that things are worse, but hopefully it leads to a diagnosis which would mean proper treatment and relief. Fingers crossed for you that the c-scope on Monday gets you some answers! Wishing you lots of luck and hoping the prep goes well too! Keep us posted, we'll be thinking of you. :)
 
No worries Cat, sometimes things move fast on this thread! Yes I agree, one of the easiest tests to do, got some great pointers on here to make it easier too.

I hope the biopsy results come soon too, but I don't think they will even be back from the lab for another 1-2 weeks. So slow here. Had 2 lots of biopsies before and is always around 3 weeks from lab.
 
Cat, Thank you! :) And I know it's not good that I've gotten worse, but at the same time I'm like, ok, at least things are starting to finally show up for the doctors. So, it's given me some hope that maybe he can find something on Monday. I will definitely keep you guys posted!! The prep is going to be the worst part, so just gotta get through that on Sunday! My doctor is putting me on Miralax AND I have to take 5 laxative pills with it. What they obviously don't realize is that even if I wasn't on laxatives I think I could clean myself out just fine! lol
 
Star, 3 weeks for biopsies?? That's a really long time! I can't imagine how long something like pill cam results would take over there if that's the usual wait for biopsies! I've said many times that I'm jealous of the NHS and the fact that it's free, but I will admit there are a few benefits to our (horribly broken) health system here and one of them is that I can (usually) get test results back pretty quickly. Still, given the choice, I think I'd rather wait a bit longer and not have to make monthly payments on my stack of medical bills... Anyway, I hope it takes less than 3 weeks to get those results, that seems like a ridiculously long wait to me!

Sunshine, I completely agree, prep is by FAR the worst part of the whole thing. If you haven't already, my advice is to stock up now on anything & everything you'll need, so that you're as comfortable as possible. Wet wipes, butt cream (Calmoseptine is my favorite, you can get it at Walgreens - they usually keep it behind the pharmacy counter), jell-o and whatever other liquids you're going to drink, etc. The last time I did prep, my hubby made me homemade broth by stewing chicken in the crock pot for hours. Clear broth was allowed and it was really yummy - not as yummy as solid food would have been, of course, but I think it was just about the best thing I could have had on a liquid diet. Oh, and get yourself some entertainment too, load up some games or movies on your laptop if you have one, or get some good books, stuff like that to keep you entertained during your many trips to the bathroom during prep! I find prep goes by a lot easier if I'm distracted. I have one of those little portable DVD players and I got some funny DVDs (Mr. Bean!) and watched those last time I prepped. Good luck, I hope it goes by easily and uneventfully with no vomiting. :)
 
Thanks for the helpful tips!! I will definitely load some funny movies onto my laptop! Great idea! :) I will keep you updated! :) And thanks again for the luck!
 
wow, there is a lot of testing going on for everyone!! hope everyone gets the answers they need.. the videos are a great idea for prep! we have netflicks that i could watch on the computer.. thanks for sharing.. will def keep that in mind next time!!

I have some good news! well, first the not so good news.... i went in today for the xray to the sitz marker test. the xray tech told me there were still some rings left in my system but didn't tell me how many.... from what i can tell, if there are less than 20% left in my system then it is a normal result.. so i am hoping for 4 or less... i have a call into my gp for the results and am hoping he calls tomorrow with the results! GOOD NEWS!!!!~ i have scheduled my appt w/ the gi dr at the university of pennsylvania hospital in philadelphia today. and.... drum roll..... they made me an appt for monday aug 1st at 1pm!!!!!! woo hoo!! do not have to wait months for the appt.. small prayers are answered!!! i am sooo excited.. only downside is that my fiance cannot get off work to go with me.. :( we were actually going to visit some friends of ours in philly this weekend (who are both professors at penn college (not the hospital) so i can get the lay of the land while there on sat and know where i am going on monday!! doing my happy dance!!!! :dance:

sunshine~ thanks for the song.. it was very fitting for this club!
 
Yes the NHS has it's faults but overall it's okay. I have had thoughts creeping back in lately though, that if I was still living in the States I would probably have some kind of good health insurance through my Dad's work (VA Hospital, so a Government job), and wondering what the different outcome(s) would have been. Like, I think 5 years ago they would have done more tests than bloods and a flexi-sig!.

Have to say I am trying not to, but kind of freaking out about this pancreas issue. I always wondered if there would be any additional problems due to being undiagnosed/ untreated for so long, and then this pops up.

But hopefully I can do a sample before tomorrow morning in time for Mum (who has kindly said she will take it straight to path lab at Hospital) to drop it off, but it maybe that I can't time it right and it ends up going on Friday morning.

But I will ring my GP Mon/Tues pm when hopefully the results will be in so not a long time to wait and find out.
 
Sunshine, I will watch that video when I get home tonight (currently at work and youtube is blocked from here).

NetNet, how exciting to get an appointment so quickly! Less than a week away, I think that's a new record. My GI can't even see me that quickly when I flare! I hope it goes well, please keep us posted. I hope the test results give you good news too!

Star, that's an interesting point about if you were still in the US. My parents both worked at the US post office so we always had government insurance when I was growing up, and I remember my parents frequently complaining about their out-of-pocket costs for things like emergency room visits (one example that springs to mind is that they decided not to take me to the ER when I broke my nose at age 11 - it was their thought that it would cost too much and the doctors wouldn't be able to do much for me. So, my nose wasn't set properly and healed wrong, and to this day I have a crooked nose, a deviated septum, and myriad sinus issues because of that.) So government insurance isn't necessarily the best here, at least that was my experience! (Or possibly it wasn't all that bad but my parents were just too poor/cheap. I was a kid so I don't really know a lot of the specifics.)
 
Sample will be going into the Hospital path lab tomorrow morning *grins*, so will ring GP Monday afternoon to see if test results are in.

I found the clingfilm method... interesting. First piece fell out so I had another go which worked. I do think though there is a small chance that there was some urine on the film but I didn't realize that until afterwards, if they can't use it i'll just do another one with my old method (a sterilised old plastic container which I can angle to avoid urine better). I did take the sample off the top though.

I just have never gotten the hang of doing only one at a time, sometimes it's easy and sometimes I just cannot do it. Had to do a 24 hour urine collection once and that was hard in the morning when I got up and desperately needed to do number ones and number twos!

Haha. I love I can talk about these things here.
 
SunshineSmile said:
Star, CONGRATS on such a fast appointment!!! :) Good luck with everything!!
Click to expand...

Nah not an appointment, I can ring up after 2pm for standard test results such as blood/ specimens, which the receptionist will give me over the phone, I am hoping they will be back then but no guarantee.

Thanks :) I am really worried about this. It would be so ironic if my ex GI is the one who picked up this problem (if it is one)!! :voodoo: :ywow:
 
i was shocked too the appointment was so quick.. they must have had a cancellation and i called just at the right time..

my appointment came back clear.. no rings found at all in my system.. so i passed that test.. as far as i can tell, that was used in diagnosing ibs and chronic constipation.. i could have told them i don't have ibs!!! oh well, i will be able to go over everything at my first appointment on monday..

hope everyone has a wonderful day tomorrow...
 
Star, Good luck with it! I hope they can figure out what's going on with the results they find! :) and that would be very funny if your ex GI found the problem lol. But as long as someone finds out what's going on with you, then I guess it doesn't matter exactly who, just as long as they can fix you!

NetNet, that's good that you had the chance to do that ring test and that they found that you don't have IBS, considering most people don't even get any tests to prove that, most doctor's just blame GI problems on IBS. Which I don't understand, because it's kind of like a way of saying we don't know what's wrong and your tests are coming back normal, so you must have IBS. It's a little frustrating to all of us! Hope your appointment goes well on Monday and good results come your way! :)
 
SunshineSmile said:
Star, Good luck with it! I hope they can figure out what's going on with the results they find! :) and that would be very funny if your ex GI found the problem lol. But as long as someone finds out what's going on with you, then I guess it doesn't matter exactly who, just as long as they can fix you!
Click to expand...

Thanks :) It's a new problem (if it is one) as the blood test that came back abnormal has always been normal in the past. So, I would see it as a consequence of being ill and untreated for so long, sadly not the master answer so to speak. But maybe that would get me more prompt help fto dx GI issues. We shall have to wait and see!
 
Star, that's good though that what normally comes back normal came back ABnormal because the problem is starting to show up. That's what's been going on with me too. 2 years ago I got normal for everything. Now, little things are showing up and the doctors are realizing it's not just something i'm making up (which why would i? lol). I have a colonoscopy monday! :(
 
Star, am I understanding this right? For the stool test, they didn't give you something to go in that would collect your stool? You just had to figure out a way to collect it on your own?? When I had my stool tests they gave me this thing which fitted over the toilet bowl and collected the poo and kept the urine out. It was big and I had to give them like 6 stool samples so I had to use it several times, which meant I had to wash it out after each use (gross), but all in all it worked pretty well. I can't believe they expect you to figure out on your own how to collect a stool sample and keep urine away from it too! That just sounds ridiculous to me. Glad you got it worked out though, and I hope you get a good result.

NetNet, good luck with the appointment on Monday! Sunshine, good luck with your scope on Monday too! And Star, good luck with the test results on Monday! Sounds like Monday is a big busy day around the club - I'll be looking forward to your updates and hoping for good results for everyone!

My update is that I'm feeling a little bit crappy again. I've noticed my acid reflux hasn't been as well controlled lately. My stomach has also been pretty distended lately, even more than usual - I look like I have a beer gut or a pregnant belly! I'm wondering if the reflux is aggravating the gastritis and making my stomach swell up. I've been meaning to make a GP appointment, and I think I'll make that next week and see if he could up my dosage of Omeprazole (generic Prilosec) again. That worked really well when my gastritis was previously giving me trouble. As it is I've been popping Tums like they're candy just so I can do things like exercise and sleep. I went to the gym today (after taking about 5 Tums) and had a little nausea and stomach pain the entire time. But I pushed myself, and I do feel good for it even though I also feel bad, if that makes sense! Also, I didn't feel hungry, but somehow I wolfed down my lunch when I wasn't really paying attention to it. So it's been a little weird like this lately, I'm hungry but I'm not, I feel crappy but also okay or even good... it's hard to describe! It's like my body has dual personalities, ha ha. I don't get it. But I don't have a GI appointment until late Sept, so I figure it can't hurt to talk about this stuff with my GP in the meantime. At least he should be able to help with my reflux issues which should in turn get the gastritis under control too.
 
I was wondering the same thing about the stool sample testing w/ Star! Recently when I had to do mine, I asked the lab tech for the "urine collection hats" that they use in the hospitals. Those things that fit under the toilet seat..you just have to push it to the back of the seat to avoid getting urine mixed in. That must have been horrid trying to figure it out any other way...and with saran wrap?? OH MY ! :shifty-t:

Cat...could you possibly just ring your GP and ask about he Omeprazole ? My GI has me taking double the normal dose for Nexium because of the extreme heartburn/acid, so I am assuming that is a "norm". Maybe just a phone call could answer that for you so you don't have to wait and hurt more before your appointment ? I hope you start feeling better soon! I am all too familiar with the "hungry but not" "feeling good but not really" scenarios...I may not explain it any better than you, but I get it! :)

Net..good luck at your appointment Monday..hope you get some kind of answers !
 
Tracy, I've been amassing a long list of stuff to ask my GP about (besides the reflux/gastritis thing, I also want to ask about whether I might have costochondritis, a few questions regarding my migraines and whether he might prescribe Imitrex for me, to follow up with him regarding the progress I've made in physical therapy for my hip arthritis, to ask if he knows anything about mast cells/mastocytosis, and also to ask about a test he wants me to have, some kind of lipid test, but I want to ask about it and to know what exactly that test is for), so I've been meaning to make an appointment with him for several weeks now, and I definitely think I should have an appointment rather than ask my laundry list of questions over the phone! My list of questions seems to get longer by the day and it's been a few months since I've seen my GP anyway, so an appointment is definitely in order.
 
Oh yes ! LOL you definitely need to ask all of those questions in person! :)
I wasn't suggesting that you not see him or make an appointment, only that you could possibly ask that one question when you call to make the appt, or whatever. Man o man, you poor thing...you deserve some answers !! And, I really hope the answer to the costochondritis is a no for your sake and it's something much milder and treatable! Costo is another chronic inflammatory condition that I wouldn't wish on my worst enemy! I know you've read up on it some since David posted about it, so I'm sure you have some idea of how bad it can get. I hope your GP gets you in quickly :)
 
Monday is the big day for a lot of us in the club!! Good luck to everyone!! :) By the way, I'm super happy because my doctor said I could take Zofran to help with the nausea while i'm doing the prep, so I feel better about it now. Praying that I don't get sick and let's all get some results!!

Cat, aww I'm sorry that the gastritis and reflux is kicking in again! I had a problem with it the other night too. It was weird, doesn't usually bother me, but it had me up til 7:30 in the morning the other night, didn't sleep at all. I'm sure you can definitely relate with that. I hope it gets under control for you, Cat.

I think that we should all get diagnosed soon so then we can all be in a, "YAY we're diagnosed club". :) But until then, it's nice to know that we all can support each other and hep.
 
Cat, if you happen to remember the name of that device I would sure be interested! Have been looking online for like a disability aid but not found what I had in mind yet. Found a good device for urine collection though!

Yes I didn't get anything apart from a sample pot, so had to figure it out. My old method of a plastic tub usually works well but wanted to try the clingfilm method. I just have a problem as I said not peeing at the same time.
 
:medal1: wow cat~ you really described how i feel most days.. frustrated and miserable, but still in a good mood.. it's like your body is feeling crappy but your mind still thinks ur body is just fine!! i am the kind of person who is always in a good mood.. one of those people who sing first thing in the morning that most people just don't wanna be around cause they are tooo happy that early... so people don't realize how much i am suffering cause i don't show it.. today was a little difficult to keep up that smile.. i ate very little (and that can make me cranky cause i love food) i had a yogurt, a small cup of canned pears, tomato soup, and jello all by 2pm and around 2:30 i looked like i was prego and had to unbutton my pants again at work.... i get so tired of that.. my stomach is still distended.... but why???????? i can't seem to put a rhyme or reason to it.. thought it was something i was eating before.. but i'm eating what i'm supposed to.. soft foods that are low fat and low fiber.. you asked if i have found some relief for the bloating, and i have been trying a generic version of gas x... it helps sometimes but not always.. but i will keep trying.. lol anything for relief!!

monday is a big day for a lot of us! hoping our appts and test go good.. i did a little research on the gi dr i am seeing monday and she specializes in IBD!!! that was really exciting to find out.. hopefully that means she will be more sympathetic to my symptoms and try to get to the bottom of what is going on.. i have my guard up though.. cause i just can't believe it is going this easy... when will the other shoe drop and everything go wrong.. things just don't fall into place for me like this.. think about it... 1. to have a top 7 gastro dept in the area, 2. to get an appointment in 5 days and 3. with someone who specializes in IBD in their dept just seems impossible to do.. i must have been a good girl recently!! :worthy: lol anyways.. sorry i get long winded.. no one around me really wants to hear about it anymore and they really don't understand anyway.. so i find i can vent in the evenings on here to let it out and relieve the stress and then sleep! really glad i found you guys!! :wub:

i'm going out of town for the weekend, but will try and check in.. hope you all can have a great relaxing, stress free weekend!!
 
I'm home! Woot! Paris was a blast but I'm so glad I'm home!

So it turned out that my intestines hated me beef tartar (aka raw hamburger pattie) that I ate on Monday. >.< Slowly but surely I got worse and worse as the trip went, and it was harder and harder to get up at 7-8ish in the morning to run around Paris all day. Wednesday night I ordered a "twisted macncheese" at Hard Rock and it ended up being a macncheese made with spicy red peppers and very spicy cheese. Of course I ate it, thinking I would tough it out if it hurt. I haven't eaten spicy food like that since before all of this started, so 7 years! o_O It ended up causing terrible pain...which really dampened yesterday, which was our last day in Paris. We tried to do what we planned, which was Versailles, shopping, and going up the Eiffel tower, but I was crying in public, on tramadol, so we had to give up. Overall the trip was really good though!

Now to try and catch up with all that happened while I was gone! ;)

Star, I can't believe they didn't give you anything for the collection! I know here in Europe they have some toilets that have a flat part before the water, so when I was in the hospital I didn't need a device, but in the US I was given a basket like thing that went in the back part. I lived in a sorority house at the time, and it was so embarrassing to walk up greek row with my plastic poop collector! >.<

Jeannette, thats great that your new GI specializes in IBD! Either way I hope she helps you figure out exactly what is making you feel so bad, whether it is IBD or not.

Sunshine and Cat, that is a great idea to take zofran while prepping! I rarely vomit (I dry heave a lot when I am nauseous tho), and both preps so far I have vomited many times, last time every time I tried to drink more prep! I will have to keep zofran on hand for this prep!

Sunshine, good luck with the colonoscopy!

Cat, I'm sorry you are feeling bad! :( I understand what you mean with the dual personalities. It can be confusing!

My pill cam is in 5 days, prep in 4!! O.O I'm still in disbelief! With the way I ate on the trip, and keeping active, I'm definitely in full flare. I have 5 ulcers along my tongue (tiny but painful!) that have been there about a week, and one giant ulcer the size of my thumb nail that has been around for about a week and a half. My pain is very high and my stomach is back to being warm to the touch and physically swollen where I am in pain! So I have a feeling that this pill cam will show something (a rhuemy of a friend of mine's, one of the best in Atlanta, told my friend that if you have mouth ulcers you have them somewhere else in your body at the same time). I'm still completely clueless as how things will go if I get diagnosed since I am going home, but I'm not dwelling on it since I know I will be devastated if it comes back normal, so I'm trying to not think about it too much!

I hope everyone has a good weekend!
 
Star, if/when I do stool tests again, I will make sure to find out the name of the thing they gave me! Allie seems to be describing the same thing, it was like a bucket/basket thing that went in the back part of the toilet bowl and collected the poo but it was only the back part of the toilet bowl so the urine didn't go in. I didn't have to specially ask for one, it just came with the 6ish jars that I had to fill with samples. The jars also had a nice scooper thing attached to the inside of the lid so that you could just scoop up your sample and put it right in the jar easily. The only messy part was cleaning the collection thing after using it, that was gross.

Allie, that spicy mac & cheese sounds so painful! I can do mac & cheese but only if it's the kind that comes in a box with the fake powdered cheese. Real dairy and spicy foods both just kill me! I hope all this dangerous eating pays off for you with the pill cam. It sounds like France was fun when you were able to enjoy it. Did you make it up the Eiffel Tower? My grandmother always tells a story about how she barfed at the Eiffel Tower. When my grandparents were first married in the early '50s, my grandpa was in the army and got stationed in France. My grandmother went with him, and she was pregnant with my dad at the time. They went to the Eiffel Tower one day, but apparently even the thought of going up that high while pregnant didn't sit right with her and she barfed then and there! So needless to say they didn't go up the tower. ;) And that's always what I think of whenever anyone mentioned the Eiffel tower, ha ha. And my grandma isn't even a crohnie!

NetNet, I may have found the cure for bloating! Or at least I may have found a way to cut back on it. My reflux was acting up a bit yesterday and I took a ton of Tums. The bottle says not to exceed 10 in 24 hours but I probably took more than that yesterday. I was so bloated yesterday that I didn't think the Tums were helping - but today, I'm way less bloated! Not sure if it's a coincidence or if the Tums actually helped.

Speaking of taking too much medication, I don't know if you guys have seen the Microscopic Colitis Club that David started in the "General" part of the forum (I know Tracy has seen and posted in there). David mentioned that he's going to try to take "high doses" (I'm not sure how high though) of Pepto Bismol for a month or two, as apparently it's very safe to take Pepto daily even in high doses, and apparently it has some anti-inflammatory properties that can help with things like microscopic colitis. My GI has mentioned that microscopic colitis is a possibility for me (it has similar symptoms to Crohn's and also responds to Entocort), so that interested me. I'm going to be following that thread with interest and I may try it myself if he has any luck with it. I'll be on a diet of Tums and Pepto! ;) I thought it was valid to mention here, since we're all undiagnosed it's possible some of us could have microscopic colitis and the Pepto thing may work for some of us. Personally I want to see if David has luck with it first.

Sunshine, I can definitely relate to being kept awake due to reflux being awful. Sometimes I can't even lie down, even with my head propped up, it just gets too bad! The worst was a couple months ago, I was asleep and had a dream that my reflux was just terrible and I was nauseous and felt so crappy. I suddenly awoke and realized, oh no, it wasn't just a dream! My reflux actually influenced my dream and then woke me up. I was up half the night with a bucket next to me (didn't need to use it fortunately, but came very close a few times) and my heating pad on my stomach, waiting for my Prilosec and Zofran to kick in. That was another night that I was popping Tums like they were candy! So not fun. And of course when the reflux acts up, the gastritis gets worse too and that's really awful when it gets painful. Do you get pain like 2 inches above your bellybutton when the gastritis acts up? My usual Crohn's-like pain is in the lower-right, near where the appendix is, but my gastritis pain is upper middle abdomen. Not fun! I'm hoping the Tums is keeping the gastritis at bay though. I had gastritis pain yesterday but none today so hopefully it won't get bad again.

My update is that I am doing better today than I was yesterday. "That time of the month" is in full force and I'm having some cramping and a bit of d because of it, but nothing too awful. The bloating is way down and I'm not in pain like I was yesterday. I went to physical therapy today for my hip arthritis, and my therapist said I'm making good progress. Also, I'm kind of happy because I get to keep seeing my physical therapist for at least another month or so. My physical therapist is VERY pregnant. At the first appointment I had with her, I assumed she was about 8 months along because she was pretty big then, although I never asked about it until today. That was a couple of months ago that I first saw her. She's SUPER huge now and I asked her today when she is due - she said early September! So she's only about 8 months along now, I can't imagine how big she'll be in another month! (She says she's only having one kid but I would bet money that it's twins, I don't think you get this huge with only one baby in there!) But, I'm kind of glad that I get to have another couple of appointments with her before she has her kid(s), because she is a very good therapist and I do feel like my hip is improving. So, yay! Hopefully by the time she is out on maternity leave, I'll have enough exercises in my repertoire to be able to continue improving while she is out.
 
Allie, thanks, i will need the luck to get through the prep!! lol

Cat, I know EXACTLY how you feel. that's exactly how I feel when my gastritis acts up. I have to sit at like a 90 degree angle lol and my dream did the same thing to me the other night, it was so weird. It was like my stomach was telling my dream to wake me up so that I could sit up and feel better lol. And of course i'ts never an easy fix. Tums hardly works I pop them like candy as well lol. And then everyone else in the world is sleeping, and I'm like I wish I could sleep! But I'm glad you weren't have gastritis pain today, that's great. I do get the same kind of pain, it's more of a cramp, but that might be because I had my gallbladder out, so maybe the scar gets sore sometimes when my tummy is in full motion. I don't really know though.

Today, I couldn't believe it. I went to the bathroom 12 times... :( I haven't been that bad in a little while. I didn't even eat either. My time of the month is coming up soon though so that's no fun either. I'm hoping that the day of my prep i don't have my monthly gift... :( that would be very bad... that would just make everything bad. the nausea, cramps, bloating...etc.
 
Cat, thats hilarious about the Eiffel tower! Unfortunately we didn't make it to go to the top. :( I was completely wiped out by then..we had bought tickets for 9:30pm. I was crying from pain by 11am, so there was just no way I could have made it by then. We went to the tower on Monday, but the line was so long to get tickets, so we decided we would buy them online and come back later. I'm not too upset that we didn't go up, we went up the 360 tower at night and that was a beautiful view, and I am still kinda shocked I just got to stand under the Eiffel Tower!! :)

I'm sorry your time of the month is giving you trouble! I was suppose to have my time of the month this week too, but I decided to skip it by skipping the brown pills in my birth control. I was in enough pain, and I was already super tired, so if I had to add my period on top of it would not be fun! The Pepto thing is interesting...I've never taken immodium or pepto actually...when my body started this crappy D 10 times a day routine I was just happy it wasn't the chronic constipation I dealt with for years. Better out than in, right? ;) I think I am also going to look into microscopic colitis a little more too. I hope David gets some good results and maybe the rest of us can try it as well!

Sunshine, I'm sorry you are going so much! Just think though, your prep Sunday wont be as bad, right? My prep is Tuesday and I am already taking some of my miralax I keep on hand to try and make the actual day of prep not as bad, since the tramadol can constipate me!
 
Allie, that's so exciting that you got to see the Eiffel Tower in person!! I want to go to Paris one day! And i totally agree with you, to me i think it's better to get everything out then keep it in you with constipation! I'm getting nervous about the prep... tomorrow's the day of the prep!

I just got my time of the month gift, and it's hurting me pretty bad, so I'm just hoping that maybe I won't notice it as much with everything else that is going on with the prep tomorrow. And then Monday morning is the big day!! And then your prep is Tuesday! I'm so happy for you about your pill cam, Allie! Seems like that's the test that is the best! :)

All of our tests seem to be all around each other... maybe all the stars are lining up? Signs of good luck and results maybe? :)
 
Hey guys I'm a little worried. Just noticed about 3 inches left above my belly button there's a spot that is very sore only when I press on it. Feels like there's tension in that spot and it's a sharp pain when pressed on. Does anyone else have that or know what that is???
 
Is it still there? Did it go away? Sometimes I can feel what I figure is a gas bubble in there. But it feels like a pocket of trapped air and it is a little painful to the touch. Hope you are alright this morning.
 
It didn't go away, and I'm really nauseous. Today is the day of my prep for the colonoscopy and I'm already feeling nauseous by myself without any prep in my body. Ahhh :(
 
I'm sorry about the pain sunshine. :( I get pain like that all the time, but unfortunately I have no idea what it is from. My doctor has said it might be tenderness from cramping, or trapped gas. Of course this was when he was thinking it was severe IBS, so I'm not really sure. If it is trapped gas, or stool, hopefully the prep will help you out a bit. Make sure to take the zofran! Do whatever makes the prep a little easier: tv, movies, internet, a good book, etc! When I prep on Tuesday I'm going to eat Jello (not red jello of course), drink a ton of sprite, and have fun with the cable TV and find tons of hilarious stuff on the internet.

As for me....I am feeling really pitiful right now. Since I got back from Paris, everyday my pain gets worse than the day before, and it has never been this painful before. I just feel like I'm completely deteriorating. I'm getting really scared of what the pill cam might show, or if it somehow shows nothing even though I feel like I am being stabbed over and over. My BM's are covered in bright yellow mucous as well. I was on Tramadol to be able to survive the trip, so now its not very effective....which REALLY sucks. I'm on 100mg and my pain is still an 8. I'm really frustrated that it has gotten to this....and I'm so afraid its not over, because I can't keep going like this for much longer. I have a feeling this flare will keep going until someone realizes its crohns and treats me...this flare has lasted over 2 months already, and it is my longest flare yet. I'm at the end of my rope here! :(
 
Allie, the pain is weird, right? and it also seemed to feel kinda throbbed and shot pain around to my back too. Do you get that as well?? I could just be gas or stool, so I guess I'll see about that once I take the laxative pills and the Miralax for the prep.

I'm so sorry your flare is lasting for SO long... that's crazy! 2 months! :( You poor thing... that sounds terrible. At least your pill cam is almost here!! Then hopefully they will see whats happening and give you treatment asap! Sometimes I find it kinda ridiculous that the doctors can't figure out what's going on with us. I know that there's a lot of stuff that cause all the same symptoms, but they are doctors, ya know? lol just is weird to me. If you have red flag symptoms, like inflammation, bloating, diarrhea and blood, they should be able to know okay it's probably kinda serious. Oh well, hopefully soon all this craziness for us will come down to a diagnoses.

I WISH THIS NAUSEA WOULD GO AWAY :( I took the nausea pills but it's not really working. Doesn't help though that it's that time of the month. My puppies are my medicine. I have two dogs, and whenever i'm not feeling well, it's like they know that. So, they sit next to me and keep me company. :)

I have a question also, sometimes I'll be eating and like RUN to the bathroom, and sometimes I get bloated and stuff but then I don't have to go to the bathroom right away... do you think that if there was inflammation and maybe it was blocking the stool from getting through that that would happen? Like, i wouldn't have to go right away because it got stuck a little, and then later on if I eat something else it triggers it and pushes it through the narrow opening? I don't know, just a thought. I will know tomorrow if that's happening. If the doctor comes back and says everything looks fine, i'm going to freak out lol. How does someone have all these symptoms and feel terrible for years and have nothing show up. But, I'm going to be hopeful :)
 
My pain doesn't shoot to my back, but it can be sharp and sudden. Most of the time its a stabbing like pain that comes in waves, but not sudden.

I just took another 50mg tramadol out of desperation...its a really bad day. I have never been like this with my meds, I usually don't take it thinking I might need it some other time...right now I need it more than ever...this really sucks. I feel really awful for taking it, but I just don't know what else to do. I'm crying and just overall freaking out over the amount of pain I'm in! :(

I would most definitely be going to the ER if I was in the states right now...I could use some decent pain meds and I am scared that something is really wrong! But the German ER has a language barrier, and they don't give pain meds...so there is no use in going there. I'm really hoping I will get some help on Wednesday at the hospital, or even on Tuesday if I walk in early out of desperation.

I have a dog too! She has been by my side all day since she knows I'm not feeling good. She even follows me to the bathroom, its actually kind of cute. :)

I have had the same thing happen with the urgency. I also think there is inflammation that is causing it. I think my colon towards the very end is inflamed, because sometimes even D is hard to get out, like I am almost swollen shut. I have learned to not rush to the bathroom, and to give it as much time before I go to the bathroom, or I will be sitting on the toilet for awhile waiting.

I'm sorry the nausea pills didn't help. :( But the prep you have is very easy! You shouldn't vomit on miralax, you can't even taste it. :) I wish I was doing a miralax prep..it was my miracle drug when I had chronic constipation as a teenager!

Here to both of us feeling better soon and getting some answers during out tests this week!!
 
Allie, I love dogs! :) they always know how to cheer me up! Mine follow me to the bathroom too haha! SO cute!

I think you have a good theory with thinking you may have inflammation in your end of the colon. Definitely makes sense. i really hope you get answers, no one should go through flares for that long. But maybe having it so bad, will be a good thing with the results!

I did a colonoscopy 2 years ago and took miralax and threw up with it before, but i'm really hoping all is well with it today. I've been praying and thinking good thoughts! :)

I think it's good luck that we are doing our tests the same week! The stars are lining up, we will get fixed soon!!
 
Allie..just sending healing thoughts and hugs your way!
I'm sorry you are feeling so terrible right now :(
I hope you're right and the problems show on your pill cam..you deserve some definitive answers already!

Hang in there :)
xoxoxo
~T~
 
Thanks Tracy! I kinda glad my test is Wednesday, hopefully being in a bad flare when the test actually is will finally show whats going on!
 
Had the worst day and night ever from the prep for my colonoscopy... :( Went in this morning for the procedure and was so nauseous they gave me medicine through my IV, thank goodness. Went in for the colonoscopy and the doctor said everything looked fine... :( He took biopsies, but he said he wants me to schedule a Pill Cam soon. He said maybe something is wrong with my small intestine. I'm really upset because I had hope for this test... :( but I guess I'll have to hope that the Pill Cam can show something... I just don't understand how all of my symptoms and weird pains that directly are from IBD are there, but yet nothing is showing up. I have no idea what's wrong :(

Hope your Pill Cam goes well Allie! Best of luck!
 
I'm sorry your colonoscopy didn't show the problem. :( I was extremely upset after mine last December, so I completely know how you feel. The good news is, nothing is seriously wrong with your colon! And that is great news that they want to do a pill cam. A lot of us here have had to fight for a pill cam, and some still haven't been able to get them. In my case it took 8 months after my colonoscopy for them to decide I needed more tests, which in my opinion is insane.

Out of curiosity, where are your pains located? Have you had any tests at all indicate something? I know you have been struggling with this for about the same amount of time as me..I understand that it can get frustrating really easily!

Don't give up! Just keep trying until they figure it out!

Thanks for the well wishes btw. :) I just ate my "last meal" a little while ago so...the fun begins lol! My hubby stopped on his way home today and got me tons of approved liquids to drink tomorrow on my way to the hotel at the hospital, as well as a lemonade mix they suggested to add to the prep to make it easier to drink. :) This should be much easier than what I'm used to!
 
Sunshine, sorry to hear the c-scope didn't see anything. They took biopsies though, right? Did they get into the terminal ileum and take biopsies from there? I hope the biopsies show something, or that if you have the pill cam that it shows something! My c-scope also came back normal when I had mine in April 2010, and my GI said that he did get into my TI also and did take biopsies from there. Biopsies came back normal too. So frustrating! I really feel for you, it's tough to feel so ill and then to put yourself through the hell that is prep, just to be told that it all looks fine and normal. You know you are ill, so don't give up fighting for answers!

NetNet, you're having a test today too, right? Good luck and keep us posted! I hope all goes well!

Allie, good luck with the prep and of course with the pill cam itself. Did you ever find out if they'll let you leave the hospital during the 8ish hours that you have to wear the belt? Either way, I hope the prep and test go well and of course keep us posted! Got my fingers crossed for you and will be thinking happy thoughts for you on Wednesday!

Star, how are you doing today? Did you get any results back from the stool samples or the biopsies or whatever else you're waiting on?

I'm doing suspiciously well today. I can never fully appreciate good days, I keep waiting for things to start going wrong or hurting again. But, my reflux seems mostly controlled today and my gastritis has been pretty quiet for the most part, my period is mostly over so the cramping has stopped and my guts are fine and I'm back to having normal formed stools again, and I actually have energy and feel pretty good. I'm just about to hit the gym, I'm going to attempt to go 3 days this week instead of the 2 days per week that I've been doing. Wish me luck! I'm hoping my body can handle it and that the added stress of more exercise doesn't cause my guts to go haywire. I really want to get as fit as I can while I'm feeling okay, not sure if it will impact future flares but I'm hoping it can't hurt... much! ;)
 
Allie, yes that's good that nothing is wrong with my colon, but you're right it's just frustrating to have pain and no one know what's wrong. My pain is located on my right near where my Ileum would be, and I've had pain upper left quadrant between my belly button and ribs. And, I've had kidney pains, and my spleen is enlarged. :( I'm so glad that you're doing your pill cam! I'm hoping you get results!!!! *crosses fingers!!!*

Cat, he said he took many biopsies! and he went in my terminal ileum as well. All my pictures from it look good from my sigmoid colon and my rectum, BUT the pictures from my ileum and ascending colon look kinda yellow and there are 2 bumps (?). So idk what that is, he seemed to think everything was normal though, so i'm confused. Glad you're feeling well today, Cat!! That's wonderful! :)

Do you guys want to see the picture of my ascending colon? I can try to post it...(didn't want to post it if you guys thought it was weird or gross) and I didn't know if i was even allowed to.
 
No no results. Too early for biospsies and couldn't get an answer at GP surgery this afternoon to see if stool sample was back. Can't ring before 2pm for test results, one of their little rules.

And complaint service deadline is tomorrow. I have a new GI but heard nothing about a review which is the other thing I asked for.

Shoulder pain is giving me merry hell again and appetite really dropped!

Looks like i'm not getting a PET scan as heard nothing either way. I *think* funding issues are decided upon at special panel meetings, and it's been over a month so must have been one by now.

Sunshine, sorry you didn't get an answer yet :( Let's hope the biopsies find something. As far as I know a yellow colour is normal (digestive juices) but as for bumps I am not so sure. So pleased you are getting a Pill Cam!!
 
Oh okay, thank you so much, Star. It was just weird to me how that was yellow and looked kinda how my Gastritis looked in my tummy. and then it was nice and pink in the other pics of my sigmoid colon and rectum. But the doctor said it looked normal, so i'm sure the biopsy results will come back normal too, but we'll see in a couple weeks.
I'm soooo sorry you are getting pain today Star!! :( that's definitely no fun. I hope they can figure out what's going on with you and get you some more tests to rule out stuff and give you a correct diagnosis.
 
there is a lot of info on here about the similar symptoms between IBD and Endometrosis. Maybe type it into the search feature and I think you will find a lot :)
 
Crohn's Mom, Thank you, I'm going to make an appointment to get a sonogram to see if I have endometriosis. It seems like something that is common when undiagnosed for so long with symptoms that are like IBD. I hope I can get an appointment soon!
 
Sunshine, if you want to post pictures feel free! I never got to see the pictures from my scopes so I am a bit curious. Oh, and a few posts back you and Allie mentioned dogs. What kind of dogs do you guys have? I got my corgi, Lily, back in December and she's been great. My cat's the one who usually follows me into the bathroom though! My husband thinks it's weird. Sometimes she tries to follow him in there but he always kicks her out. Personally, especially if I am going to be stuck in the bathroom for awhile, I don't mind having the company of one of my pets in there with me.

I don't have any advice about endometriosis, but I agree with Tracy, searching the forum should provide a wealth of information! It's my impression that endos and IBD seem to go hand in hand for a lot of the women here. And it's definitely possible to have both - I know that Joan (Astra) has mentioned a few times that she had a ton of endos and she also has Crohn's.

Star, sorry to hear you haven't gotten any results back yet. I hope you get them soon! How frustrating for them to make you wait like this. I hope it doesn't take too much longer!

Allie, today's prep day, right? Best of luck with it and I hope the pill cam provides you with some answers! But, as I've learned, try not to get too depressed if it also comes back normal. From the sounds of it though, I can't imagine it not finding something! Especially from that area you talked about that's hot to the touch! I can't imagine an area like that would look normal if it's that inflamed. Anyway, best of luck and please keep us posted! I hope you get the results back in a reasonable amount of time too so that you can start treatment if need be. Good luck!!
 
Thanks Cat! Yeah, i just got done with the first half of the prep.. Yuck! I added a ton of crystal lite to it and it still tastes disgusting. I am already pretty much cleared out, but the second half has to be done at 2am, which is just crazy to me. So Im going to bed now, even though I still wont get much sleep!

I have a corgi/black lab mix (they call them corgidors lol) named Kallie. :) She is so sweet, everyone always falls in love with her! Shes a good companion on days that Im feeling ichy, since she likes to sleep a lot too. :p

Even though Im clear so to speak, Im still in a ton of pain and it is still visibly swollen, so Im going to have my GI check it out right before we do the pill. I just need him to realize something really is wrong! It sucks for people to put you down just because they think they know more than you. I personally am looking forward to dinner after i give the belt back!! Lol :)

Sunshine, I have heard that endo can reach up into the abdominal area, causing GI issues. I went to my obgyn before I went the GI route, and they did an ultrasound checking for cysts or endo. It would definetely be something to check out!

I hope everyone has a good rest of their day!
 
Good luck tomorrow Allie :)

Have realised too that the Complaints service deadline was today. So now they are acting illegally as they were supposed to contact me withing 25 working days. I have had one thing out of two that I asked for and no contact from them.

Why does no-one care I am sick? I am so tired, I can complain elsewhere about this too but what is the point really? When the people who are supposed to help you don't. I may as well just give up on everything.
 
Good luck Allie. Thinking of you and that awful prepping you have to do. Hopefully it'll be worth it and you can get some answers. I hope your doc doesn't take long getting back with you.
 
Cat, my puppies names are Rocky and Luther. They are both little chihuahuas! They are the sweetest things. I swear they know when I'm not feeling good. They get very concerned and follow me everywhere, and I agree, I love the company. My mom calls my dogs, my medicine. :) I am concerned that it may be IBD and Endo. I have been constantly nauseous the past 3 days and it hasn't gone away. I've taking Zofran, Emetrol nausea syrup, tums, Zantac, and Pepto. Nothing is working. :( I feel awful. Even if my colonoscopy is "normal", can IBD be shown up in Pill Cams in your Small Intestine? What's causing this terrible nausea spell? :(

Allie, I went to the girl doctor before I went the GI route too, but that was like 4 years ago... so my doctor seems to think I should get a sonogram just in case. i have a girl doctor appointment tomorrow morning at 9 to schedule a sonogram. Maybe I'll get an appointment for the sonogram soon so we can see if anything is up with that, or rule it out at least if that's not it. And, GOOD LUCK ALLIE!! We are all hoping you get some results!!

Star, I hope you feel better!
 
Is a sonogram able to see endos? My GYN told me it's a pathological diagnosis - that they basically have to open you up laparoscopically and take tissue samples to confirm. I think I also read that. It's another pain in the butt diagnosis to get.

Sunshine - The pill cam will visualize all of your small intestine. There's lots of length of intestines for CD to hide in. And your colonoscopy would only have gotten as far as the terminal ileum, I'm pretty sure, which is a common spot for CD but certainly not the only place it pops up. If you had an EGD it only went as far as your duodenum. So there's plenty left to see. Check this out:

http://www.ccfa.org/info/about/crohns

Scroll down to the "Types of CD" section. There is a breakdown of typical symptoms based on where the CD is located.

Yes, Allie, we are all cheering for you!!
 
Mayflower, I thought that you had to go in laproscopically as well, so I'm a little nervous about that. I'm meeting with the girl doctor tomorrow morning and she will explain what test to do for that. The nurse in the office seemed to think you could do an ultrasound or something, but we'll see. I read the website you gave me, and it's very interesting where Crohn's can hide. I wonder what's going on... if I have something like Endo or IBD, or both... hmmm, so frustrating.
 
Star, you sound more down than usual. :( Please don't give up! Just because some people aren't listening doesn't mean that everyone isn't listening. We certainly are! We care and we hope you get some decent treatment from somebody, anybody, in the medical profession - hoping your new GI will be that person! As for the complaints meeting, I don't suppose you can file a complaint against the complaints people? Maybe there's like a supervisor or something in the complaints department that you can talk to about your situation?

Allie, I love corgi mixes! My dog is a purebred Pembroke Welsh corgi, but she was kind of a rescue (I got her from someone who couldn't keep her any longer) so I didn't get to pick the breed. My husband's cousin has a corgi/basset mix which she calls a corset! :D And I've heard the queen of England has both regular corgis and corgi/dachshund mixes which are apparently called dorgis. I've never heard of a corgidor before, sounds very cute!

Sunshine, my pets are like my medicine too. When I'm having a really bad day, I seek out my cat and give her lots of petting and then I put my ear on her side and just soak up the purrs. I call it purr therapy, ha ha. :) I've always been more of a cat person but my dog is awesome too. She's super funny and can always make me laugh even when I feel like crap! Corgis are funny (looking) in general, so short and stumpy with big ears. I bet your chihuahuas provide a lot of laughs too! Do yours do tricks? Mine does this hilarious thing: I'll say, "Lily, your breath stinks!" And she'll WOOF! And then I'll say, "Lily, do you need a breath mint?" And she'll WOOF WOOF WOOF very enthusiastically and then I give her a doggie mint. So cute!

Okay, enough about pets and back to the serious stuff. ;) Allie, if you're already going clear, I wouldn't worry too much about doing the other half of prep. I was always told that when I start going clear that I can stop drinking prep. So if it were me, I'd get some sleep tonight and not worry about the 2 AM dose of prep. Good luck tomorrow!!! I hope your GI feels your warm spot and takes you a little more seriously!

Sunshine, what May said is correct - the c-scope will see the very end of your small intestine, and the upper endoscopy will see the start of it, but there's still a lot of small intestine that is being missed by both scopes, and the pill cam will be able to see all of it. It can't take biopsies, which is the one major downfall, but it can visualise the entirety of the bowel. And I read recently that scientists have created a prototype pill cam that can be steered, and one that can take biopsies might not be too far behind. So in a few years the technology should be really great, and for now it's certainly not too shabby. So if you can get the pill cam, by all means go for it! It's a very good test to have.
 
hello all! not sure if this is an active thread. . . i am an "undiagnosed" 25 yr old female who has been suffering from severe diarrhea, fatigue, and abdominal pain for 2 yrs. last year i had my gallbladder out and the problem got wayyyy worse; i was diagnosed with "bile acid diarrhea" and put on questran, which helped a little but not much. a couple months ago i had a colonoscopy which showed inflammation of my stomach and intestines (gastritis and duodenitis), but did not conclusively point to crohn's or UC. and then last month i contracted C-diff, which i've been trying to get rid of for weeks. my GI doc says she thinks I have a fat malabsorption problem, which is hopeful- my family doctor said it was "just IBS, take some Imodium, try not to stress out." My question is this: could an underlying problem such as Crohn's cause gallstones and malabsorption in an otherwise healthy college athlete? it's been 2 yrs of the BRAT diet, i'm starting to get very tired all the time, my hair is falling out and i have lost 24 lbs (currently 5'6" and 115 lbs.) sorry for writing a book but i'm a bit frustrated at the moment. . .
 
Yes, this is a very active thread. There are a lot of us undxed people on here.

Did they find a cause for your inflammation? IBS isn't supposed to cause structural bowel changes. Yes, Crohn's can cause malabsorption. I don't know about gallstones. I know several people on here complain about hair loss (myself included, but mine appears to be from low ferritin levels), and I know IBS isn't supposed to make you lose weight.

Have you thought about getting a second opinion? If you are hitting a dead end with your current GI maybe it's time for a switch up. Or ask for more tests. There is no definitive test for CD although doctors like to confirm the diagnosis with pathology from the biopsies they take.

You say your colonoscopy showed stomach and duodenum inflammation...Those areas are only reachable via upper endoscopy. Did you have the scope up your butt or down your throat or both? ;)

Hopefully you'll get some answers soon.
 
Well, I am hooked up! I know what you guys mean about clunky now, lol. And it was kinda scary to swallow a pill that is flashing as you look at it! :p I was approved to come back to the base we have our hotel room at, so we are going to hang here as long as we can and then we are going to try to pass the time at the giant PX here on base...its like a huge mall in the states, which we don't have on our base 3.5 hours away. I still have birthday money too spend which is keeping my mind off of how hungry I am!

I ended up doing the 2am prep but only a little bit of it, then I tried to get a couple hours more sleep. My GI's nurse thinks I might be allergic to the prep though, because my heart rate was at 130 when they did my vitals this morning, and it was that high all night when I wasn't nervous, just trying to get some sleep. It wasn't a bad prep either, two little pills each time...so I'm kind of upset that I might be allergic.

They looked at where the pill was before they let me go and it was in my small intestine, a healthy part at that. My GI was a lot nicer today, which surprised me a ton..maybe he was in a bad mood last time? I dunno. But I didn't get to talk to him about my stomach before they hooked me up to the belt, and he was rushed when I did talk to him. The shocker is....He is going to go through the pictures and give me my results BY FRIDAY! O.O I am so surprised...its because he is leaving for the states on Saturday, and he deploys right after that, so he has to take care of it now. He is going to call my cell as soon as he is finished! I'm kind of afraid he wont take enough time on it, but I'm going to trust him. I could feel when the pill went through the part that hurts, because my pain shot up and went back down about 15 minutes later. By the time they looked at it with the potable viewer it was past that point.

I'm definetly not getting my hopes up about the results though. I'm going to go back to how I was before, treating it as IBS, and know that if it stays this bad for another 6 months or longer with my IBS treatment I'm going to pursue it again, at least to see if there are any other treatments.

Sorry if this was really long! I'm a little out of it from not eating for so long lol. :p

Sorchapatrix, I'm glad you found us here! Yes this is a very active thread, but if you want to add your own thread for anything undiagnosed you are welcome to in our undiagnosed club section; its new so we are still using this out of habit! ;) I have had several of the same symptoms as you, and I understand how frustrating this process can be. I'm glad they are finding things out and trying to sort them out! As for the IBS comment, many of us here, including me, have heard stuff like that, and what I've learned is to ignore it. Especially with everything they have found with you! Hopefully they will take the inflammation into account when they try and figure this out, and maybe do more tests to confirm their suspicions. Keep us updated!
 
Cat, that's so cute about how your dog barks like it's talking to you! My dogs unfortunately are not very intelligent lol. We throw a ball to get them to fetch and they stare at me like i'm supposed to go get it!! :p

Allie, GREAT JOB on the prep and getting through it all!! That's great news that you get the results so fast!! :) Can't wait for you to tell us what's going on!

As for me, I'm waiting for the biopsy results from my colonoscopy, and I just had an appointment with my Gyno about the Endometriosis idea. She said that it sounds like it's more of a GI issue and not a female issue, but the cramping could be from it, so I'm going to get an ultrasound done to see if there is any Endometrioma in my ovaries, and then I will be getting the Laproscopy to see if I have Endometriosis on top of the tummy issues I have. I believe this is happening next Friday (so, a week and a half from today). I left a message for my GI doctor to let him know that I was pursuing his idea of the laproscopy, and hopefully we'll get the biopsy results from colonoscopy back around the same time that I do the laproscopy for the Endometriosis. And then.... PILL CAM!

Allie, How come my GI doctor said that for my Pill Cam I won't have to do any prep the day before... he said I just drink something when I get to the testing center and then I take the pill? Are there a couple different pill cams?

Hope everyone is doing well today :)
 
Allie, that's fantastic that you'll get the results so quickly! I'm with Star, that's got to be a record!

As for your heart rate going up, did you or the nurse/doctor notice anything else weird? My understanding is, a high pulse rate can indicate dehydration, and I got severe dehydration both times I did prep. So it's possible you're not allergic at all, just dehydrated. It's really easy to get dehydrated while doing prep with all that "peeing out the butt" stuff going on! Especially if you're already ill like we are, the intestines don't absorb as much water if they're inflamed and that makes dehydration more likely.

Keep us posted! And have fun shopping at the PX! My family took a long vacation to Germany when I was 20, and I remember we got sooo sick of German food. Near the end of our trip, we found a small PX in the town we were staying in, and we were so excited to find American foods in the PX! I clearly remember stocking up on Cheetos. :)

Sorchapatrix, welcome to the club, and yes this is an active thread! Have you had any other tests done besides colonoscopy? Your symptoms certainly sound like they could be an IBD (Crohn's/colitis) - you do not get symptoms you mentioned like unintentional weight loss, malabsorprion, or hair loss if it's "just IBS". Keep fighting for a diagnosis, ask for more tests (blood tests, stool samples, upper endoscopy, and imaging tests like CT scan or MRI would be a good place to start if you haven't already had tests like that). And as May said, you might need to get a second opinion from another GI if your current GI thinks it's IBS or can't find what's making you so ill. Good luck, I hope you stick around the forum but hope you don't have to stay in the Undiagnosed club for too long!
 
Sunshine, sounds like you're getting a lot of tests done quickly, good for you! I hope that at least one of them can shed some light on what is causing your symptoms. I hope the laprascopy goes well - Crohn's Mom just had laprascopy last week I believe, so she might be able to give you an idea as to what to expect. Good luck with everything and of course keep us posted! Hoping for some good news for you!

My dog doesn't fetch either. Corgis are a herding breed, so she'll run after the ball and get it and bring it back... to her other toys! She won't bring it to me, it needs to be herded together with all of her other things. It's kind of funny the way her mind works! So if I want her to bring the ball back to me, I need to stand right next to her toy basket. ;) Allie, this makes me wonder - your dog is part corgi (herding) and part lab (retriever) - does your dog seem to be more of a herder or a retriever? Will your dog fetch and return balls to you?
 
Sunshine, there is only one type of Pill Cam but it seems the procedure varies from Hospital to Hospital. Some involve prep and some involve a fast. I know when mine was booked I was told no prep but no food after a certain time.
 

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