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Crohn's Disease Forum

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Good luck with the PH testing.. sounds really interesting.

Meanwhile.. since my colonoscopy 2wks ago.. my LRQ has been "griping" and feelss sore
then this last week my diarrheoa has returned. joy!
Only today it has got worse and is bright yellow! Yuck..
think it possibly could be a bacterial infection which would tie in with the small patch of inflammation they found. meep :(
 
So I got my pre& post Pred trial results.
No surprise that the inflammation markers didn't improve.
What was a rather nasty shock was they actually increased. CRP 11 then 18 (so borderline normal which it comes back as the odd time). Modest rises in C3/C4, 1850 to 2008 for example.
So not only did the steroids not work, the inflammation increased while I was on them- I took the post trial tests the day after my last pill.
Seriously wondering wtf is wrong with me. Glad am getting started with London in less than 2 weeks!
:(
 
Star, I've been absent from this thread for awhile, so I'm not up to date with what's going on with everyone. I see in your sig that they are testing u for something else. Will they do that in London? So what does the pred trial results mean? More confusion? I hope it gets sorted out soon for you...((hugs))
 
Yes, more confusion I think is right. Rheumy said at least that tell us my auto-inflammatory triggers aren't traditional, but I think after all the normal tests had figured that out for myself!

I am indeed going to a specialist in London. First they are testing me for a genetic form of a rare disease, and then I think I will be tested for the other types (there are three) after that. But the genetic test takes 4-8 weeks to get the results back so will be a long wait. Anyway this Dr is a super expert in inflammatory diseases which is pretty much exactly what I need. I figure if I get nowhere with him, he will know someone else in the specialist/rare disease field I can see after.
 
Star, that's just crazy. When I was on pred, my symptoms flared up worse than ever shortly after I stopped taking it, so I could realistically see how inflammatory markers could rise if you had the blood work done a week or two after stopping pred, but the markers going up the day after is just mind boggling! Wish I had answers for you but that's just weird. Did your rheumy have any insight as to why that might happen? Allergic reaction to pred maybe or something along those lines? I know there are some people who just don't respond to pred - I think Sunshine is like that - in spite of having diagnosed inflammatory conditions that *should* respond to pred. Still, how frustrating and confusing though! Good luck in London, glad that it's not too far away now. Keep us posted on how it all goes! Got my fingers crossed for you that this will finally get you some answers and relief!

Bozzy, my d is sometimes bright orange (regardless of what I've eaten) when I'm flaring, and I've had very pale d, like the color of sand, when my gastritis was at its worst - but I've never had yellow d. I hope it's like you said, just a small infection that can be cleared up easily. Are they going to put you on antibiotics or anything? Or do they need a stool sample first? Are they still waiting for the biopsy results from your scope? I hope this all clears up soon and isn't a flare or anything too awful. Hang in there, big hugs!

I have a cold but I'm doing somewhat better today so I think I'm over the worst of it. My 2nd summer cold this year, how lovely! The 1st summer cold I had was awful, I had gastro symtoms on top of it - yuck. It was a pretty bad cold that lasted awhile. This cold, I felt it come on Wednesday afternoon and now it's Friday afternoon and I'm already feeling better, so I'm pretty happy about that. Slightly looser stools yesterday but nothing terrible and things have already gotten back to normal today in that regard. I haven't had another poo yet where I saw an Asacol tablet, so I still don't know if I'm passing shells or full tablets or what. I had a good day yesterday in spite of the cold, though, it was one of those days where a lot of nice things happen in a row. I went to the thrift store and they had shoes on sale, and I found a pair of brand new shoes in my size and it was one of my favorite brands no less - on sale they were only $3! And for some reason, they were giving away free roses at the thrift store (no idea why!) so I got some shoes and a rose. :) Then when I got home, I got a letter in the mail from my grandparents and they included some "just because" money with it, that's always nice too! So yeah, that was all wonderful and cheered me up immensely. New shoes, a rose and some money - what could be better? :) Don't answer that (chocolate, a new car, a cure for all chronic illnesses and an easier way to diagnose them... ;) ).

I hope everybody has a good weekend. Big hugs to all and good luck to anyone who has upcoming tests/appointments!
 
Hi there! It seems I'm undiagnosed as well. I've had problems for years and after many colonoscopies and other tests the Dr. does just one more and diagnoses me with Crohn's. He dictated in his note that "even if the IBD panels or biopsies are unremarkable due to persistence of ulcers this is ileitis". So I start medication and drink smoothies for weeks and go in to see his ARNP. She orders more lab work and tells me it is Crohn's and I still have to take the meds. I got a little better for a couple of wks, then bam! I start getting sick all over again. I go back in and have to see a different ARNP and basically tells me my lab work is fine and my biopsies were negative so it's not Crohn's. I'm so frustrated. Don't get me wrong, I do not want this disease (I'm sure NO ONE does) I just want to know what I am dealing with. After hearing it was Crohn's I felt like I had a name, I can deal with this. Now I just feel like I'm back at square one. Thanks for "listening"...
 
Cat, thankyou for your kind words and support as always. Rheumy didn't have any explanation, apart from whatever triggers my auto-imflammatory response isn't typical or traditional. He is going to let the London Dr know what happened.

It was no surprise they didn't go down because I did not feel any better while on even the highest dose os Pred (I had 30mg for 2 weeks), but it was a rather nasty shock to find they'd gone up, was not expecting that.

agirl65, i'm sorry to hear of your troubles. I would see a proper GI instead of messing about with a "general Dr". Or if it is a GI you're seeing, let them know about all the inconsistencies, or see another GI all together. The care you have been getting from your current Dr and his team isn't good enough.
 
Hi everyone i just wanted to say hello to you all. I have been visiting your forum for a long time but never had the guts (pun intended) to join you! So a big hello from me and sorry if i have bombarded your thread.
 
StarGirrrrl said:
agirl65, i'm sorry to hear of your troubles. I would see a proper GI instead of messing about with a "general Dr". Or if it is a GI you're seeing, let them know about all the inconsistencies, or see another GI all together. The care you have been getting from your current Dr and his team isn't good enough.
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Hey StarGirrrrl, thanks for replying! I was in my GI's office but he wasn't there Tuesday for my appointment. (He's great) this was the first time I'd ever seen this ARNP. She said my labs showed inflammation numbers to be within a normal range. I'd been on Asacol for weeks, wouldn't that make the inflammation go down? Then when I asked her if I could stop taking all these pills she said -no, that's what we treat your condition with? What condition, you just told me basically that I'm normal. Then she said that I wouldn't want to be labeled as having Crohn's due to my insurance. I work at the hospital, so my insurance is fairly good. Twas a strange visit indeed...
 
Survived vacation with the in-laws. Turned out I wanted to drop-kick my niece off the side of a mountain and not my mother-in-law. She was a close second.

But I've got a cold, too, Cat. Ugh. Started feeling all sore-throaty Wednesday along with the kids. At this point, Sunday, I've been chilled all day and got home to
discover I have a 101 degree fever. I feel stuffy, but the aches and chills are horrible today. This is gonna be a bad week. Hopefully I can suffer through it bc I am ready for these tests. Not so much ready for the results but we will see and by that I mean the possibility of a positive dx for something other than ibs, which I never really was dxed with anyway. It was basically a place-holder in my case I guess. Anyway, I'll be absolutely shocked if something shows up. I do have this niggly little pain in the LRQ but I don't know if that's meaningful or not. My guts were well-behaved on the trip, but I started my period and this is apparently a time where I'm constipated as opposed to the other option. Okay well I'm exhausted. I hope everyone had a decent weekend.
 
Welcome to the new members! Glad you found us, but I hope everyone gets some definitive answers soon.

May, that sucks about the cold. Fortunately mine didn't hang around long and I'm feeling mostly better now, I hope yours doesn't hang around long either. Glad you survived the trip but wanting to drop-kick two relatives doesn't sound good!

Star, isn't it lovely getting a response like that? ;) Your response wasn't typical, well duh! My GI once said that I'm a "tricky case". I was like, no kidding! Urgh, it's just great to be ill and have your doctor admit that they have no idea what's going on, isn't it? Hang in there, not long to go now until London! Hopefully everything will be worth the wait (including the long wait for the results!).

I'm doing okay, getting nervous and excited for my ph testing in a few weeks. They said I should eat whatever will make my reflux act up on the day of the test, so I'm planning a menu, ha ha. Bean burritos, lots of peanut butter (not on the burritos), and I think a big greasy pizza are all going to happen on that day! I'm sure I'll pay for it but that's the point of this test, so I'm just going to try to enjoy it as much as I can and hope my reflux gets angry without my guts stirring up too much too.

Oh, can everyone send some happy thoughts Sunshine's way? It's her birthday today and from what she said on facebook yesterday, she was stuck at the doctor so it sounded like might be spending her birthday at the doctor. :( The poor girl needs one good day at least. Sunshine, if you read this, we're all thinking of you! Happy birthday!
 
hey everybody - sorry my posts are a bit few and far between lately

@jenni-jim-jam - welcome to the club! please tell us your story :)

@star - have you seen the specialist in london yet? my memory is rubbish right now and unsure what stage of testing you are at..

@may - so glad you survived the holiday! i landed pretty lucky as my in-laws are awesome! unfortunately my husband was not so lucky.. as my mother is awful! haha


i called up my GP's office today to check if my biopsy results have come back. the doctor hasnt written a report for the secretary yet - so she was just reading little bits from the results. all i could understand is : THERE WAS NO BACTERIAL INFECTION FOUND but there is unspecified inflammation??

so i called my gastro secretary and she said she couldnt give results over the phone... (which i dont understand because she told me my results were normal after my sigmoid a few months ago)
i then explained that my symptoms have got worse since the c-scope.. so she's gonna try and get me an appt some time soon.

hmph... so if the inflammation was not an infection.. and the bleeding i had in june was not an infection... SURELY i dont just have IBS???

what else can cause inflammation in the bowel?
 
Bozzy, if it's not an infection and there's inflammation and bleeding, I'm at a loss as to what else it could be - sure sounds like IBD to me! I'm no expert though, so definitely ask your doctor what else this could be, if anything. I'm trying to remember, you respond well to pred, right? That again would make me think IBD (IBS doesn't respond to pred) but then again pred works on most inflammatory conditions, so I don't know for sure. I hope you can get it figured out and get some relief already, it sounds like you're just getting worse and worse! :(

So this is completely unrelated, but it's so cute and I'm so proud, just have to share with you guys. My dog is so smart! She picks up new tricks pretty easily and this time is no exception. We've been trying this new thing with her - we put a little bell at her level, by the door, and we've been dinging the bell everytime we let her out to go potty. The idea behind it was that she'd eventually get the idea to start ringing the bell on her own to let us know when she has to go out (it has a button that she could just boop with her nose to ring it). She's not the type of dog to scratch at the door or anything, she doesn't let us know she has to potty unless she REALLY has to go, so we thought the bell would be a good idea to try. And hubby told me that today, she rang the bell by herself for the first time! It took a few weeks of us ringing it, but it seems like she has the idea now. I'm so happy, wasn't really sure if she'd pick this trick up or not. What a smart pooch! :)
 
That's amazing Cat, and so cute!

Bozzy, i'm sorry you've been messed around and hopefully you will get the full results soon.

I go to London next Thursday, initially it will just be taking blood and sending that off for genetic testing, will be 1-2 months before they get it back. I am assuming once the genetic side is excluded I will have a more in-depth chat with someone there. I know my Rheumy was going to let them know about the lack of steroid response.
 
@cat - your dog sounds adorable!! :) how old is the little mite?

@star - good luck for tomorrow! i bet you cant wait to see what those results say in a couple of months!?

just to add insult to injury.. i returned home after work today.. to find a letter.
this letter was an appointment to see a rheumatologist.. would you like to guess when this appointment was for??
it WAS for earlier this afternoon. so i'd missed it! lol.. blumming nora!
they posted the letter 2 days ago by 2nd class mail... how on earth was i meant to know in order to make it to the appt!?

lol honestly.. it all goes wrong at once doesnt it!?
 
Star, so they're just going to be taking blood at this London appointment? Surely that's not it, hopefully they'll at least also take your history and talk about your symptoms and stuff like that? How disappointing that would be if you went all the way to London, gave a vial or two of blood, then turned around and went right back home. I hope that's not the case!

Bozzy, thanks! My dog will turn 4 years old in a few weeks. We got her when she was 2. Her birthday is coming up and I can't wait - I'm going to get her a "pupcake" (cupcake made for dogs - a local shop sells them and they're really cute).

And Bozzy, how frustrating about the rheumy appointment! Is that how they do it in the UK, they just send you a letter? Surely if it was such a short timeframe they could have called too?? I always get a reminder phone call a day or two before any doctor appointment or test to remind me about it, and as a result I haven't missed an appointment yet! So what can you do, are you able to reschedule it soon or do you have to be put on a waiting list now?

I'm doing okay today. A little disappointed in my body but what else is new! I've been trying to eat more fruit lately and I bought a bunch of grapes and have been eating them every day for about a week. And my stools have been noticeably looser since I've been eating the grapes. No pain, and I don't see undigested grapes, but my body just clearly doesn't like them. I just keep trying to eat healthy, and I seem to fail every time!It's disappointing. I try to be healthy but my body resists what should be good for it! Sometimes I'm tempted to just give up and eat nothing but potato chips, but I know I can't do that. Just have to keep trying to be as healthy as I can, in spite of all the failure diet-wise.
 
Hi Cat, from what I was told on the phone, I am going to the genetic amyloidosis clinic, and the nurses will take my blood for testing. So, I am pretty much expecting to go all the way there just for a blood draw. Whether I will be asked any history or not, I don't know. I hope not, because i usually take Mum along for first time consults because they usually have questions about my childhood only she can answer, and I told her she didn't need to come with me this time because it was just a blood draw!

Which is why it's such an anti-climax, I don't see anything decent happening until those results come back. From what I know, you then go in as an in patient for 1-2 days and have all the other tests they do. Or at least for an in-depth consultation.

Heck, I don't even know if they are only looking at genetic amyloidosis and not the other types.

Will let you all know what happens next week!
 
i saw my podiatrist on 29th june.. and he ref'd me to the rheumy then.
i called the hosp to check my referral had been done and they said 10wk wait

you normally get a letter a month before (or at least a week!) giving you a set appointment and name of a doctor. then you can call to rearrange if its unsuitable
 
they also do an automated phone call that reminds you of the appointment.
i did get a missed call on my mobile yesterday whilst i was working.. but it was a private number so i couldnt call back and had no idea who it was from
 
Star, that does sound anti-climactic then. :( Are you able to do anything fun while in London since you'll be there anyway and will apparently only be at the hospital a short time?

Bozzy, that stinks that they didn't leave a message and it was from a private number! I hope you can get the appointment re-scheduled soon (and that they give you more advance notice next time!).
 
Bozzy, I agree that it's weird you get a too-late letter in the mail and a call from a private number and no message or anything! Crazy! Hope it can be rescheduled with not a lot of trouble...
 
All clear - scope and MRE. He did take random biopsies, though, so I'll probably get those results in a week or so.

Maybe I do have "just" IBS. ((shrug))

I know one thing. Unless I start majorly bleeding or something, I'm not getting another scope until I'm 50 and need to be screened for colon cancer. I'm tired of paying $1100 plus pathology and anesthesia for the privilege of starving, giving myself watery diarrhea and having a camera shoved up my ass.

Anyway, I'm really not disappointed in a lack of IBD dx, I am just annoyed I let him scope me so easily.
 
Hopefully you havent got long to wait for your biopsy results. was that your first scope?

I contacted the rheumatology dept..and theyre annoyed that somebody messed up on it.
I also contacted my GI's office and cant get an appointment with him until end of october.. so ive used my health insurance to see a different doctor on 10th september!

Meanwhile my LRQ pains are getting worse :(
 
no, 2nd. i had my first 2 1/2 years ago when i finally went to the doctor. it took a week, so that's what i'm basing my estimate on.

meanwhile, the gas pains are killing me. upper gi pain. ugh...i don't remember this from last time.
 
I think it depends on the gas they use..
my 1st scope caused a lot of gas pain too.. but my last one hardly hurt at all!.. the nurse said in that room it has just CO2 i think and that doesnt bloat as much.
dont quote me on that though lol!!!!
 
I had hideous gas (?) pain after my first and only c-scope so I can relate! It came in waves and doubled me over. It was awful! I'm not entirely sure if it was gas pain, or if it was pain because my GI had taken so many biopsies, or a combination. Fortunatelyl that pain didn't last very long and I felt back to normal within a day or two.

Bozzy, we'll both have doctor appointments on the 10th of September! That's the day of my ph impedance test so I'll have an NG tube in all day. Lucky me. ;) I'll keep you in my thoughts on the 10th and hope that we both get somewhere. I'm glad you were able to get a relatively quick appointment. How does insurance work over there, will you have to pay anything like a deductibe or co-pay or anything? Or is it still free and you just get seen quicker than with the NHS?

I'm feeling very blah today. Stupid grapes. I think I already mentioned this in another post, but long story short I stubbornly ate grapes every day for a week in an attempt to eat healthier. My guts got mad about that and today's worse than yesterday was. I haven't had grapes today but I've been pooing a lot, very loose stools and some urgency and a fair amount of cramping too. And at one point I saw some grape skins on the tp when I wiped, so my body definitely doesn't like grapes. I'm supposed to go to this get-together thing soon with some co-workers, and I want to go because a few people who I used to work with and who I haven't seen in awhile are coming, but I just feel crappy and I'm not sure where the bathrooms are at the place we'll be meeting up at (outside by the lakeshore, so it's possible there won't even be bathrooms nearby which is scary!). So I'm not sure if I'm going to go or not. I'm tempted to just go home and collapse on my chaise lounge and put the heating pad on until it's time for bed. I think I'll probably go to the lakeshore for just a short time to say hi and explain that I don't feel well and then go home pretty quickly, that sounds like an okay compromise to me (most of my co-workers know that I have "stomach troubles" and most are sympathetic so they will know I'm not being rude). But blah, part of me doesn't even want to go at all. All this because of some stupid grapes and my piece of garbage broken body, urgh. Why can't I be one of those people who can eat whatever I want in remission? I still have so many trigger foods and it's so frustrating sometimes!
 
Hello, I hope I can join the club... You have another undiagnosed person here...

A bit of my story: I started having diarrhea in 1993, in 2008 it started to get worse, rectal bleeding, stomach pain, waking up in the middle of the night and go D, night sweats, vomiting and basically, I was scared to death. In 2010, I had my first GI appointment, had blood work done and everything came back normal except my white cell count, which was elevated. After that, stool samples came back normal. My GI dr. wanted me to have a colonoscopy right away but I couldn't afford it...

I ended up in the ER last Sunday do to horrible pain and rectal bleeding. They set me up to see another GI doctor... my appointment is on September 4th. I am hopeful but scared, it would be great to be diagnosed rather then rectal bleeding, GERD and severe diarrhea.
Colon cancer runs in my family and my mom has Crohn's.. so I am a little freaked out. Any support or suggestions would be so appreciated... Thanks for listening, Suzie
 
motheroftwins said:
Hello, I hope I can join the club... You have another undiagnosed person here...

A bit of my story: I started having diarrhea in 1993, in 2008 it started to get worse, rectal bleeding, stomach pain, waking up in the middle of the night and go D, night sweats, vomiting and basically, I was scared to death. In 2010, I had my first GI appointment, had blood work done and everything came back normal except my white cell count, which was elevated. After that, stool samples came back normal. My GI dr. wanted me to have a colonoscopy right away but I couldn't afford it...

I ended up in the ER last Sunday do to horrible pain and rectal bleeding. They set me up to see another GI doctor... my appointment is on September 4th. I am hopeful but scared, it would be great to be diagnosed rather then rectal bleeding, GERD and severe diarrhea.
Colon cancer runs in my family and my mom has Crohn's.. so I am a little freaked out. Any support or suggestions would be so appreciated... Thanks for listening, Suzie
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Hi Suzie & welcome ... although your undiagnosed stay here may not last long. With your symptoms and your Mom's Crohns dx I am very glad you are getting scoped! You will need appropriate treatment. Good luck!
 
Aww suzie! It must be so hard to have to deal with your symptoms for so long! And it must have been hard saying no to a colonoscopy those years ago? I really hope you get an answer soon.. and hopefully its nothing scary

good luck! Make sure you keep us updated x
 
Hi Suzie, welcome to the club. I'm glad you found us but sorry you are having so many issues! I hope the GI appointment goes well and that you can get some answers soon. It sounds like you've been suffering for quite a long time so you deserve some relief already! Keep us posted on how the appointment goes. And again, welcome!

So I ended up going to that work get-together thing at the lake yesterday and spent about an hour there. I took a Zofran beforehand as they usually back me up a bit, and I didn't want to have to worry about bathrooms while I was there. It worked, but I'm still backed up today and having little rabbit poos when I can go at all. My bottom is kind of sore as I was having loose stools yesterday and hard stools today - neither one is kind to the backside as I'm sure everyone can relate to! I feel better today than I did yesterday though so hopefully I won't pay anymore for eating those grapes. Hah, at the lake yesterday my co-workers kept offering to get me various things. "Do you want a beer?" "I'm going to get a brat, do you want one?" "Ice cream?" I politely refused everything and just drank some water, I couldn't have anything there (on a good day I can do ice cream, but this stuff had strawberries in it which I can't have). And when I explained (again) very simply that I have "dietary restrictions", everyone just made the sad face at me. They're sympathetic but really they have NO idea! So they blithely sat there and ate their brats (with sauerkraut - the smell alone gave me the farts, ha ha!) while I sipped my water and periodically they asked if they could get me a beer or whatever. Uh, no. Fortunately I was never a big beer or brat person even when I was healthy, so I didn't care too terribly much. It's just more of, I feel like such an outcast when everyone else is stuffing their faces with greasy food and alcohol and I eat nothing and drink water. I don't want a brat, I just don't want to stick out like a sore thumb, you know? I know you guys get it.

Big hugs to all, and have a good happy-tummy weekend everyone.
 
Suzie, I just saw your other post about eating on bad days. If you can't do solid foods at all, have you tried supplement drinks? Stuff like Ensure, Boost, Slimfast or Carnation instant breakfast all have calories and vitamins and might be pretty easy on your tummy (some people seem to have trouble with Ensure - personally I can do the chocolate kind, but the vanilla ones go right through me - don't know why, artificial flavors maybe?). Try some different ones and see what works for you.

If you can eat solid foods, stick to what is called the low-residue diet until you feel better. This diet is basically white, bland foods that are easily digested. Stuff like white rice, plain pasta (if you can handle gluten), baked chicken or fish, plain/mashed potatoes (no skins - those are really hard to digest), etc. Drink lots of water or sports drinks too to stay hydrated - if you're prone to diarrhea or vomiting, you can lose fluids and electrolytes easily. I hope that helped a bit! Hang in there, not long to go until your appointment.
 
Officially, no, I haven't been diagnosed with anything. Unofficially, my GI and GP both think it's IBD but not sure which one (GI thinks either Crohn's or microscopic colitis). They're treating me as if I have IBD - first I had a trial run of prednisone, which worked very well, so then they switched me to a safer/longer-term steroid treatment (Entocort) which put my illness into remission, and now I'm on Asacol to maintain remission. So I'm doing well in spite of the fact that I don't have an official diagnosis yet. Having doctors who take you seriously makes all the difference! They don't have all the answers but I'm able to get some good treatment in spite of that, and I am very thankful for that. My symptoms still pop up mildly/occasionally if I eat the wrong thing or get too stressed or whatever, so you'll still see me complaining on here from time to time ;) but on the whole I'm doing about as well as an undiagnosed person can do.
 
Hi Suzie -
On bad days, my son eats less and sticks to toast, chicken, potatoes, etc. He tries to distract himself with a movie or video game. Hope you feel better. Some people do really well on liquid drinks like Cat mentioned ... unfortunately Danny is allergic to milk and cassein so most of the drinks that taks any good upset his stomach more.
 
hi cat.. completely forgot to answer your question about healthcare.
the NHS we get through our taxes and national insurance, obviously you only get taxed when you earn over a certain amount of money..

private healthcare is not free (i work in claims for one of the large companies)
but we get it free through my husband's work. so i dont know how much it costs for normal family plans
private healthcare does not cover ANY take home medicines (you can buy privately, but its costly and doesnt make sense when NHS is so cheap)..
NHS only charges £7.65 per prescription and that can be any type of medicine and any amount! so 28 tablets of prednisolone costs the same as 90 prednisolone tablets..
you also get free prescriptions if you're pregnant, under 16 (up to 18 if in full time education) and certain medical conditions are eligible too

http://www.nhs.uk/NHSEngland/Healthcosts/Pages/Prescriptioncosts.aspx
this is a good site that tells you all about that

privately you can choose who you want to see but on the NHS, your GP will make the recommendation, and you can ask for a 2nd opinion. Although many of the private sector specialists do work on the NHS too
although people can complain about NHS wait times.. this is generally a long wait for things that aren't urgent. for example the NHS aim to get you seen within 2 weeks if it is suspected cancer
I know its annoying to wait sometimes.. but im glad i dont have to worry about going into debt in order to get treated!
 
I'd love to do something fun in London but just not possible health wise :(

Been really bad over the last week and am starting to worry. In the past I have only ever felt like this following a flare, and I have not had one of those. I am walking up and down stairs one at a time like an old lady because I cannot manage one foot per stair. And this morning when I got up my feet really ached like I had been shopping for hours, not like they had been rested on the bed all night.

I am hoping because I always recover from flares back to my normal level, the post-flare like symptoms will be the same!
 
Hi everyone

after reading so many of your stories, i thought i'd share mine too....as of date, i'm still undiagnosed. i'm a 22 year old female and i've been ill for 3 years now. i've always struggled a little bit with BMs but the docs always said it was IBS and told me to change my diet and have some probiotics. about 3 years ago, i started feeling extremely tired, experienced intense abdominal pain....mostly in my lower right side, started having severe nausea, vomiting and diarrhea that would alternate with constipation. i had rashes all over my body, my skin turned slightly yellow and so did the whites of my eyes. saw a GI who did a colonoscopy and told me everything was normal and that i probably have Gilbert Syndrome which is a benign condition. i discontinued my weekly visits to him and within 3 weeks, started a liver detox diet, took vitamins....(was vitamin D deficient), drank chlorophyll and what not... and all symptoms disappeared. nothing except for the occasional issues with BMs.

i was fine for 3 months and then i relapsed even though i kept up the healthy liver friendly diet, vitamins and all. I then assumed it was not Gilbert syndrome.
the pain got worse, vomiting and nausea more severe. lost 10 kgs in 2 weeks, could not keep any food down or even water. everytime i ate, if not for nausea and vomiting, i would get severe headaches and feel extremely dizzy, more after eating, diarrhea and constipation came back in full force. My BMs came with loads of mucus and only occasionally some blood . i also had terrible joint pains. went to the ER, they did a couple of blood tests, except for the bilirubin in my blood being elevated, everything else was normal.
went to see another GI specialist who also did a colonoscopy and told me he found some active colitis. blood tests normal, stool tests normal, did a barium xray..again normal, ct scans..normal..., pill cam didn't work as the pill stayed in my stomach for 5 hours and he could not get a good look of my small bowel..however he did not recommend we try again. tried so many tests and all came back normal. However, the vomiting would not abait, the diarrhea and constipation persistent and i could not get out of bed due to extreme fatigue, headaches and dizziness. he gave me some pred which initially made me really sick but helped me with the vomiting. however he discontinued due to the inconclusive results.
and then again, symptoms disappeared except for the BMs and some pain in my abdomen. i was doing well for another couple of months and i'm back to it again.
this week i haven't been to work at all. one afternoon, i felt like i needed to go to the toilet, like i was going to have diarrhea, those type of cramps. i rushed to the toilet and the pain got so intense i felt i was about to faint. no stool came out except some mucous. today is the fifth day i haven't gone.

I don't know what to do. i'm only 22 and i really want my life back. i currently work full-time but since getting so ill, i get so scared that they will make me redundant due to absenteeism. i haven't even been able to go back to uni and have had to defer again.
my boyfriend is very understanding and supportive but i can see the toll it has on him and i feel horrible causing him so much stress and worry

do you guys think it may be crohn's??? i don't know where else to look, docs are not willing to help me. they seem annoyed at me
 
Hi guys, sorry, I've been away from the forum for quite a while.
I have a date for my pillcam, it's on the 10th September, which is a surprisingly quick turn around for NHS. I've not been asked to do the prep, is this normal? They've only asked of me to not eat over night. Will that be able to see everything?

`In regards to my dietician issues, I've actually been discharged from them pending further tests, which I totally agree with. I supposed when I get an answer ,then they'll want to discuss further.

I'm feeling a bit like I'm playing that game pokemon these days, gotta catch all the symptoms. In addition to my pain and stool issues, and the eye inflamation and mouth ulcers, I'm now getting such bad joint pain. I went to a shop on Friday, and I couldn't even get up the stairs. I feel to myself that I'm only 21, but I feel soo much older! My boyfriend made me laugh by saying he had a zimmerframe in his attic! Much longer and I think I'm going to need one!
Oh, a quick question, if anyone has any information, does anyone know, or know of any studies concering thyroid conditions and IBD? I know if you have one autoimmune disease you're more likely to have another, but I'd like to see if there is a link. I've had hypothyroidism for about 4 years, it's controlled now, but any information that would help would be interesting if nothing else.

Thinking of you guys :)
 
[QUOTE I am having a hard time eating today. What do you all do on your bad days?[/QUOTE]

Sorry to hear of your troubles. I'm undiagnosed as well. Ensure and Boost have High Fructose Corn Syrup in them. I have a corn allergy so I've been looking around for another nutrient drink. I found one put out by Atkins. It's called Advantage Milk Chocolate Delight Shake. Due to issues with my blood sugar, I need protein any time I eat anything. The Atkins Shake has 15g protein, 1g sugar, 2g net carbs and is 160 calories. The last ingredient listed is sucralose. So there's not much of it in the product. I used to drink Boost then switched to Ensure during my hospital stay in May for cellulites and two blood clots. I recently switched to Atkins Shake after comparing the nutrient drinks at BJ's.

Bost list high fructose corn syrup first in the ingredients whereas Ensure list it second, so lots of sugar and calories here.

Keep us posted on how your test go.

Blessings and prayers coming your way.

Cat-a-tonic, I'm sorry to hear about your bout with grapes. Perhaps eating grapes every day is not a good idea. I too have been feeling rough this past week. My stomach and pelvic area are burning like the dickens. I've always heard that we should not eat the same foods every day; in other words, rotate the foods we eat. From what happened to you with the grapes. I'm more inclined then ever now to believe that. I know what it's like to sit and watch everyone else eat foods you can't. It stinks. There's no other word for it. I hope you get to feeling better soon.

Gentle hugs and prayers coming your way.
 
Sofrustrated1990, welcome to the club. I'm glad you found us but sorry you had to seek us out. If I read your post correctly, they found inflammation in your colon but didn't diagnose you with anything? It sounds like you've been through a lot of tests without answers, that's very frustrating and I'm sure you're exhausted. Are you currently seeing a GI? Are there more tests in your future - another colonoscopy might not be a bad idea, especially if the first one found inflammation. Did they take biopsies during the colonoscopy? Have they tried treating you with anything else besides pred?

Chell, glad to see you around, and it's good to hear that you've got the pill cam scheduled and that it's coming up soon! That makes 3 of us with appointments on Sept 10th - I have a pH impedance test that day (trying to figure out why my GERD is still acting up and why Nexium is starting to fail) and Bozzy has an appointment that day too. Hopefully Sept 10th is the day we all get some things figured out! As for the pill cam prep, I had to do 1/2 prep but the nurse explained to me that it's really more a precaution than anything, and they just need the small intestine mostly clear by the time the capsule hits it. So fasting overnight should be fine - if you're worried you could do a bit of laxative the day before or do a liquid diet the day before, or just eat lightly the day before. Any of those, from my understanding, should be fine. Good luck with the pill cam and let us know how it goes! Got my fingers crossed for you!

Star, that's a bit scary, I hope you're doing better today? I've come to learn that there are no hard and fast rules with my illness. Just because I can eat something one day doesn't mean I can eat it the next, and no two flares are alike. Heck, no two days are alike, even in remission this is true! There are general rules which are generally true (such as, I usually have night sweats in a flare, and I can usually eat chicken). But I'm always learning something new about my body and my illness(es) and nothing ever stays quite the same for long so there are no solid rules. Frustrating yes, never a dull moment, and my health always keeps me on my toes! Anyway, that was a ramble. I hope you're doing better today and have gotten over the post-flare-like symptoms and are doing okay. Big hugs!

Naturelover, I am such a creature of habit, I do tend to eat the same foods every day. If it were up to me, I'd have pasta every day of my life! And sometimes I do that in a flare, I just have plain pasta with a little butter or olive oil for every meal and it makes me feel better. I have tuna sandwiches for lunch probably 3 days a week (today I walked on the wild side and had a salmon sandwich, ha ha). It's easy, it's safe, and it's comforting to me. I've talked about this in other threads, but sometimes I think I might have Asperger's, for various reasons. One of those reasons is that I crave consistency and routine, and I don't like when things change. So when I get into a routine, I tend to stick with it. I get up at the same time, go to work at the same time, eat my snack at the same time, work out at the same time, etc - every day. When my usual routine is changed, both my brain and gut get unhappy. So eating the same foods every day makes my brain and gut happy - most of the time! Grapes not so much though. :p

How's everyone else doing today? As for me, my GERD is going haywire again. I had some M&Ms today which apparently set it off. I *refuse* to give up chocolate so I'm just dealing with the reflux for now! I am glad I'm going in for pH testing soon though, I hope it finds some reason as to why my GERD is not very well controlled.

I might not be around the forum much for the next few weeks - this week looks to be pretty busy work-wise, and then next week I'm taking off. Not going anywhere in particular, just going to maybe take a few day trips here and there. Sept 7th is hubby's and my 10 year wedding anniversary so hopefully we can come up with something nice to do that doesn't cost too much. :) I can't believe it's been 10 years already! It does not feel like that long. I do have the pH impedance test on Sept 10th and I made sure to take that day off work too, so I'll probably be on here posting updates on that day. I'm sure you guys will see all sorts of complaints about reflux and NG tubes from me on that day. Ha ha :p
 
Oh, and Chell, I just caught your comment about thyroid and IBD. I don't know if there's any correlation between the two, but I do know that thyroid issues can cause IBD-like symptoms (nausea, diarrhea, weight fluctuations, etc). I know this because they did a blood test to check my thyroid function way early on in my illness. It came back normal so they didn't look any further at my thyroid. So, if you haven't already, have them do a blood test to check your thyroid. If it comes back normal, then at least that's one more thing ruled out.
 
Hi cat-a-tonic

I have an appointment on the 4th of October to see a surgeon to discuss the possibility of having a laparoscopy but for the moment, I am not receiving any treatment, no meds. I have been ill for 3 weeks, unable to do anything and I'm getting worst but don't know what to do. They tried to give me some antibiotics but that didnt help. They did some biopsies and the report said focal active colitis. That's when he made me try so many tests but all the while I was on ( which really helped but was discontinued) :(
Do you have any advice on what I could try even diet wise to relieve some of the pain and the dizziness/ headaches.
 
Sofrustrated, they ran a bunch of tests while you were on pred?? No wonder nothing was found on your tests then - pred does a great job of masking things, both symptoms and inflammation, and as a result test results appear normal even if things really aren't. My GI told me I couldn't be on pred or any steroids while I was undergoing testing. If I were you, I'd go back and ask for more testing without being on pred this time.

On a related note, if pred worked great for you, then you almost certainly have something inflammatory. Pred only works on inflammatory illnesses such as Crohn's/IBD, so it wouldn't work on something like IBS.
 
hi cat-a-tonic....thank you for your reply. you know what!! i thought something was a bit weird about that test, i'm just amazed the GI didn't think of that. i'm not sure i want to go see him again as he based everything on this calprotectin test as well. he discontinued pred and all other tests because of that, he told me he has no idea what's going on and pretty much decided to pass on the responsibility to someone else. i think i will wait out till october to see this surgeon he referred me to. if nothing pans out, i'll see another GI.
in the meantime, i'll just have to take a day at a time :(
cat do you ever have symptoms that come and goes as in you feel well out of the blue not necessarily due to treatment and then somehow relapse?
because i was on pred for a bit and felt good even though i still had lots of pain, but as soon as he asked me to discontinue and i decreased the dose and then stopped, i still felt good and stayed like this for a month before getting sick again. i don't know if anyone else experiences anything like this.
 
Hello, you can call me Ellie. I am 21.

I suddenly became sick with Crohn's like symptoms AND Anxiety in May of 2011.

I never had problems with food before but notice a change at the beginning of the year.

Before that I had problems with stomach acid, for example Orange Juice for the longest time I couldn't drink it because I could feel it in my stomach. Does that make sense? Same with pop. I don't drink pop regularly only occasionally because of that & the "acid" problem has been going on for years now. I don't think it's normal to feel like OJ is going to burn through you right when it hits your stomach.

Okay anyways.

Out of the blue I could no longer eat vegetables, leafy greens are the worst offenders. I would get sick almost instantly from eating these. By sick I mean diarrhea. (wow, that was embarrassing to type)

As time went on I was effected by more and more foods & tend to shy away from anything new. I became very depressed because I started to seclude myself more and more. Nobody understands & I don't like explaining it to them.


The anxiety is soo bad I need atleast a 3 hour headstart to take at least two imodium JUST so I can leave the house. NO LAST MINUTE PLANS FOR ME!! Or i'll literally get so anxious about having to use the restroom that It will make me have to go! =(

So, I decided to find a GI who did a colonoscopy & endoscopy. From the time I found him to the time the test was run was maybe 2-3 weeks. He said It could be the start of something. . . . .as in there was a little something going on somewhere but it wasn't very clear & the biopsies showed nothing

He said to change my diet..... but I was only 20 going on 21 then, I HAVE NO CLUE what to eat or not to. I just avoided my trigger foods....

I forgot to add that I did a poop test or w.e it's called & it came back normal but that test was from the same stomach of food.... I think that is why it didn't show anything?

He tried to put me on Asacol in January of 2012 but I didn't help. He prescribed me Imodium & an anti depressant.....

I was fed up with it so I contacted my allergist, I asked him to test me for allergies to leafy greens etc. He said I wasnt allergic to foods but I probably have IBS. AND he was worried about how much Imodium I was taking! I would take atleast two to go to one place. When I went to work, Id take two to four...everyday! The ONE DAY I didn't take my Imodium & only took asacol (in jan) I ate subway... & the spinach made me sick =( Went home early after I started having an anxiety attack due to having to go.

He sent my GI this.

The next GI appt. I cried the whole time, didn't even talk to my doc. & just walked away nodding... ;(

He just said keep doing what I am doing. I had an appt for the 23rd but had to reschedule for OCT. I am going to bed him to retest me, run all tests on me because I am very very very depressed & I can't LIVE like this ;(



Sidenote: I notice my mother gets sick from a lot of foods. She always has to run to the bathroom. She has diabetes, arthritis, had her gall bladder out, has acid reflux/heart burn. she gets sick all the time for eating certain foods. {I think she might have crohns too, How do I ask her to get tested?! If this is something that is genetic I NEED to know. I wouldn't put kids through this. If anyone has ANY insight to help me, Id appreciate it.

I am going to try juicing vegetables to see if I can tolerate them. Has anyone been lucky with that? Until I find a nutrition or a naturopathic doctor. I am going to have to stick to my "unhealthy" foods that DONT MAKE ME SICK but will probably cause me to have a heart attack.


**has gotten sooo bad I applied for SSD but got turned away due to being young & for working at my brother's collection agency ((UHM I can't work there for my whole life?!!)) Thinking about reapplying after getting retested. If a new diet doesn't help me. I am literally at the end of my rope. =( Has anyone else been successful with that? I am not lazy!

21
Not yet diagnosed
Depressed. . severely depressed (due to this)
Possible broken heart syndrome & or still affected by traumatic events.
Arthritis
Anxiety
Diarrhea
Migraines
Fatigue
Pains
Occasional rectal bleeding

Tired of all of this.
 
Sofrustrated, I'm in remission now, but before I hit remission - yes, I would sometimes out of the blue have a good day or a bad day. Sometimes I could attribute bad days to stress or something I ate, but things definitely came and went in waves, kind of like being on a roller coaster. I'd have a few good days, a few okay days, a few not-so-okay days, a few bad days, maybe a horrible day or two, then a few okay days again, etc. I would have proper flare ups that would last anywhere from a few days to a few weeks with periods of feeling so-so in between. I never felt 100% well but there were days when I felt about 80 or 90%. In remission now I feel about 99% a lot of the time, and I know I'll never be 100% well again, but 99% is just fine with me. So yes, long story short, I totally feel the same way. And as for pred, I felt great while on the stuff. I felt like superwoman, I felt just fantastic, and all my symptoms disappeared! I was only on it for a few days, but those were great days. And then as soon as I stopped taking pred, my symptoms all came back with a vengeance pretty quickly (within a day or two of stopping). Steroids like pred are great and can put you in remission, but most of us need some sort of maintenance med to keep us in remission after stopping steroids. (I'm currently on Asacol for maintenance.) That was kind of a rambling answer but I hope that answered your question.

Ellie, welcome to the club. So if I read your post right, Asacol is the only IBD med you've tried? I'm not too surprised that it didn't work, it's quite mild and is used more for maintenance of remission, rather than to get symptoms under control. And long-term daily use of Imodium is no good, are you still using it on a daily basis? Be careful, it can cause low gut motility (in other words, your gut can become dependent on it and won't work on its own anymore without Imodium - I know our guts don't really work correctly anyway, but my understanding is this is even worse).

As for juicing, I say go for it! I have a lot of trouble with many fruits and veggies too, but I use my juicer often and haven't had trouble with anything juiced yet. Juicing removed the pulp and fiber, which seems to be the most problematic parts of fruit & veg, so with juicing you don't get painful fiber but you do get all the vitamins and nutrients. Give it a try, I love juicing and highly recommend it! And as a side note, don't be put off by juicing if you can't do store bought juices. Store-bought juices are always awful on my gut, even the ones that say they're 100% juice. I don't know why they upset me so, but juicing fresh fruit & veggies myself has never caused me any issues. So I don't know if there's added sugar or other weird additives in store-bought juice, but making it myself goes great and it tastes better than any store-bought juice too.

And, as for SSD, I haven't applied myself, but from what I've read others say on the forum - they apparently ALWAYS reject the first application. Try again, and from what I've read, it helps to get a lawyer. See if you can find a lawyer who will take you on pro-bono or who won't charge you anything until you get approved. Apparently rejecting the first application is designed to weed out people who might try to fake disability, but it really just adds stress to people who actually really need it! It's a crappy system. Do a forum search and see if you can find more threads on it - I know there's a lot of information here about it.

And, as far as your mother getting tested for Crohn's, you could call her doctor and see if there's anything you can do - but ultimately I think she has to want to go get tested herself. As far as genetic link goes, I read on here that there is approximately a 9% chance of the child having Crohn's if one parent has it. If both parents have Crohn's then the chance goes up but I don't remember by how much. So try not to worry too much about that stuff, there is a chance you could pass this on but it's not a big chance. I apparently got my illness from my great-grandfather, who had Ulcerative Colitis. He was the only person I know of in my family history that had IBD - and I'm the only one in my family currently living who has it since my great-grandfather died many years before I was born. Obviously my dad didn't think he had a chance of passing on his grandfather's crappy health genes to me, but it seems to have happened - if everybody worried about what they were passing on to their kids, nobody would have kids!

That was too long and rambly, but I hope all that helped a little bit. Good luck, welcome to the forum, hang in there, and big hugs! I hope you can figure everything out soon.
 
@sofrustrated and ellie - welcome to the club! and i hope you dont have to be undiagnosed for long.. have either of you got any more tests planned? also - sofrustrated, you mentioned that your doc found some active colitis..? was this why he put you on pred? did the pred work? and if so, i thought they should be able to diagnose you with what he saw etc?

@cat - i saw a rheumatologist today - finally! and she was lovely too. she confirmed i was hypermobile (i only thought i was hypermobile in my fingers.. but clearly its all my joints! haha) she has also done a load of blood tests on me.. not exactly sure which ones though.
she also mentioned something about connective tissue disease - is this what hypermobility is? i dont really understand what it is when i looked online.
other than that, im having a good day today. went to see the batman film and i loved it!

how is everyone else doing?
 
Bozzy, I didn't know what hypermobility was either so I just googled it. My knees and elbows do that! They bend back a little farther than they should. I have no pain or anything in elbows or knees though (except when the guts flare, in which case all my big joints hurt). How interesting, I didn't know that was a medical condition. It's only in my elbows and knees, not in my hands or any other joints. I didn't even really notice it until I was in high school, I was at my after-school fast food job one day and I was leaning on the counter with my arms straight (so my elbows were doing their hypermobile thing apparently), and a co-worker freaked out and said "elbows should not do that!" I thought it was funny, that I could freak out another person just with my elbows. :p

As for the connective tissue disease thing, I don't know that would be the hypermobility or something else? If it's "mixed connective tissue disease," that's what Allie has and it's really similar to Lupus, although I don't know much more about it than that. I believe she said it's got the symptoms of Lupus plus a few extras? Allie, if you see this, can you chime in?

I'm having a good day today too. :) I had a good workout today and my guts are pretty happy. Arthritis is quiet, GERD is about as quiet as it gets nowadays. The weather is nice, and I only have a couple more days of work and then I'm taking 10 days off! Not going anywhere in particular, just going to do some day trips here and there, but it'll still be really nice to have some time off. I'm going to ride my bike and paddle my kayak and do a lot of relaxing too! I can't wait! :D
 
haha, i knew i was hypermobile in my hands - because my fingers/thumbs do some CRAZY things. and they are my drunken "party trick" and freak lots of people out. but it wasnt until she asked me to move my arms and legs in certain ways did she point it out (because it just seemed normal to me)

ive no clue whatsoever witht the connective tissue disease stuff.. i wonder if that was what the blood tests were? i asked the nurse what tests were being done and she just replied "everything" lol.. and then we joked about films etc...

it feels so good when you get some time off work - me and my husband are currently off until 10th sept :D we go away next week to the lakes - and there is a red squirrel reserve there, cant wait to see those rare cuties! :)
when ive been reading up on the hypermobility stuff.. it worries me about the vascular type.. because that may be why my bowel decided to bleed?
 
after reading a bit more on the internet.. i think hypermobility affects the collagen.. and that can be connective tissue disease? and that can cause stress incontinence - check! and heartburn - check! and IBS - check! also can cause fatigue - check!
but this is what i think it is when i read what's online..?
 
Hey Bozzy! Yeah, Connective Tissue Disease is basically where you have an autoimmune disease where your connective tissue is being attacked. There is connective tissue in between your intestines, and it can cause crohns-like symptoms. It is very similar to Lupus and is treated with the same meds. There are blood tests for it, like your ANA needs to be positive. For Mixed Connective there is another specific blood test that needs to be positive, but not for Undifferentiated Connective Tiisue Disease (which is basically you have a lupus like disease with no name). The good thing about these types of diseases is a lot is known from simple blood tests...no terrible procedures like colonoscopys. :) Feel free to PM me if you want to chat about it.

Sorry I haven't been around...I've been reading regularly, just not able to give much input. I'm now working full time, and my illness is not happy about it. I'm surviving, but I'm not doing much other than work. Every day that I manage my pain and get 9+ hours of sleep I am getting better, but I can't do that all the time. :p

As for medically, I'm still off all my MCTD meds and things are just getting worse and worse. Joints are randomly swelling up like balloons and every bug bite I get causes an AI reaction and swells to a big welt. I've been diagnosed with Hypertension (high blood pressure) and put on meds for that. My dad has it, and it is hereditary, so I'm not surprised. With the new full time job I have no idea when I'm going to be able to go back to rhuemy for more tests to see if he can confirm my MCTD and possibly get back pn my meds, since right now he thinks I don't have anything AI....don't even get me started on that actually. My GP is having me see a pain management specialist in Landstuhl and a therapist here...she wants me to be able to say "my anxiety is not causing my pain, a therapist has said so". Very insulting. I know this is more than just chronic pain, but I've done pretty much all I can do to prove that and get treated. So right now I'm not making it a priority, instead my full time job is the thing I'm focusing on.

I hope everyone is doing well and I'll continue to pop in every once in a while. :)
 
Okay, so today was a giant dissapointment and I am trying really hard not to let it upset me.
Saw a Dr briefly who went through my symptoms in rather vague detail. Said what I was telling her didn't sound like what they deal with there- fair enough, not like that's the first time i've heard that.
She then went on to say being overweight can cause inflammation and maybe if I lose weight I will magically get better. Or it could be something like POCS or endometreosis.

I have alot to say about that. Those are cop-out answers. I think it speaks volumes that in 6 years none of the many Drs I have seen regularly have never suggested those- and as a female most male drs do tend to say "female problems" and pat you on the head as they show you out the door.

Last time I checked, being overweight did not cause blood in stool, crushing joint pain down one side only (so not as though my knees, hips are overworked due to my weight) or being awoken at 2am needing the loo in a hurry was caused by being fat.

I know I am very, very overweight and I am trying to address the issue. I have recently started daily fasting (8 hours eating 16 fasting) as a lifestyle choice and in an effort to lose weight.

Before I was really sick I could lose weight so easily but now I find it hard (something perhaps to do with my high cortisol). I am 13kgs heavier than when I first got sick. So i did not start out as heavy as I am to cause the issues.

I go back in 3 months for the results (the genetic sequencing takes a long time, then they repeat it to make sure nothing was missed). I also have to have blood taken locally every two weeks until I go again to monitor CRP and saa.

I am really upset and angry but trying not to let it get to me :(

I thought if this all came back normal and led nowhere the specialists there might have some idea where I could go next...!
 
Thats awful star! I know weight can be a factor into some medical issues.. but not the ones affecting you
what a load of bull! @&*$ im so annoyed for you.
I know its also a long wait for your results, but its good they check it twice!
So is that it for another 3months (besides being a human pin cushion for the next few months)?

@allie - thanks for the explanation.. im so glad i only need blood tests to check for it.

I picked up a copy of my colonoscopy report from my GP (but no biopsy results?) Hav to get those from my NHS GI..
it says:

Mucosal inflammation - limited erythema and congestion to appendiceal orifice.
no specific recommendations for treatment.
biopsies taken from - terminal ilieum, caecum, random

no vascular abnormality in rectum (as was found originally). Previous APC site seen. The area around the appendix was not looked at last time. Biopsies for yersinia aldo taken.

Then there is a stamp where he has circled "abnorm"

i dont understand it. and i want my biopsy results! Im sure the GP secretary told me them over the phone? Im so confuzzled lol
 
Hi bozzylozzy, no i have no tests planned as of yet. i will be going to see a surgeon in october so hopefully this brings results. the GI found some inflammation through the colonoscopy and the biopsy report stated that i have active colitis. he got me to do quite a few tests to try to eliminate other possibilities and when the pain became too much to bear and the vomiting so bad, that's when he put me on pred. soon after, he asked me to have a calprotectin test which came back negative for inflammation. he told me initially that he needed to find out what is causing the inflammation but when the test came back negative, he assumed i must have either caught a bug or developed some irritation as a result of the colonoscopy prep, so he dropped all treatment and referred me to someone else. he completely ignored the fact that this is a recurring problem. i have been very ill for the past three weeks and i don't know what to do. so i can relate to all of you guys and that feeling of frustration, disappointment and lack of support
 
Okay I have to say that is pretty stupid, treating the inflammation then acting like nothing is wrong when a test (understandably) comes back normal.

Are you able to switch GI's?
 
I agree with star.. maybe you should change your gastro. especially when they found active colitis - confirmed by biopsy... and he still wont diagnose you?!?
my surgery and first colonoscopy didnt find any inflammation.. but i had been on pred for 3mths!
And finally.. 8mths after i last had pred.. my 2nd colonoscopy showed inflammation

pred is great for most sufferers.. but it does mask symptoms when it comes to tests
why are you seeing a surgeon? Are they wanting to do a laparoscopy?
 
Hey star and bozzylozzy, I fully agree with you but he's the fourth gastro that I have seen so far and I'm starting to lose hope. Even my family is starting to think that maybe it is all in my head and that I may have psychological problems :$
pred was working wonders and I told him that. He simply said he doesn't understand how that it is even possible and that he cannot legally prescribe me any pred if there is nothing to treat.So now they want me to do a laparoscopy. Don't know if it will be of any help but im trying to remain optimistic. I appreciate your support guys, I really do
 
oh no!
how are you symptoms at the moment? and if you are in pain, is it the LRQ?
they are right to do a laparoscopy - they can have a proper look. and if its not til october, then the effects of the pred should have worn off.
its really positive that they're willing to do the surgery, a lot of doctors dont consider it as an option.. :(

make sure you keep us updated x
 
Hey Bozzylozzy! I'm not really good at the moment. Feeling completely drained! The pain is more constant in the lower right side then sometimes all over the place, lower back even left hand side and belly button. Do you ever feel like this as well?
I guess a laparoscopy is a good option but im just scared i'll get disappointed again and prove one more time to all around me that I'm making this up! I will definitely keep you guys updated though :)
 
Bozzy, I love the new profile pic! You're too cute!

Sofrustrated, I agree with Bozzy that a laprascopy should be a good thing. If you do have Crohn's, it can affect the entire thickness of the bowel. So they might not see Crohn's on the inside, like when they do a colonoscopy, but it could be obvious from looking at the outside of the bowel, in the laprascopy. They can also see other things from the laprascopy, like if you have sections of bowel that are stuck together, or if you have endometriosis, etc. Good luck with it and I hope it does get you some answers!

Star, how incredibly frustrating! It seems like some doctors are all too quick to blame weight on whatever health issues. It reminds me, had an overweight roommate in college, and she suffered from asthma. I had to take her to the emergency room on a couple of ocassions when she had bad asthma attacks. And every time, it seemed like the doctors told her "You're too fat, lose some weight and the asthma will get better." I'm pretty sure that's not true, yes the added weight on her chest may have contributed, but it was insulting to insinuate that asthma is caused by being heavy and can be "cured" by losing weight - I know skinny people who have asthma too! Yes, losing weight can be healthy (unless you're losing it in an unhealthy way, such as malnutrition/malabsorption due to IBD!). But how insulting to insinuate that will just fix everything. A lot of us on here lose weight when we flare, I do and personally it always makes me feel so unhealthy to lose weight that way and clearly dropping down 20 lbs below my normal healthy weight didn't "fix" my illness. Urgh. That is just so frustrating, I agree that it was a total cop-out answer and really insulting to boot. I hope the blood test results show something that you can work with or lead you to more worthwhile testing.

Hi and hugs to everyone I missed, I have to make this a short one today (short for me anyway). I'm taking some time off so I will check in here when I can, but I'll mostly be away from the forum for the next 10 days or so. I hope everyone has a lovely long holiday weekend (UK and Australia folks, do you guys celebrate Labor day too or is that just a US thing?). Hugs to all! I hope happy tummy days are in store for everyone!
 
Thanks everyone! She just seemed to focus on the tummy pain and fatigue. My symptoms are more than that and she didn't ask any detailed questions. PCOS and endo could fit nicely if it were not for the joint pain and excessive fatigue!

I have to confess I am a little worried. I have always been taken seriously by my Rheumatologist. But he has left and I have to see a new one now, although he has been over my notes (when I asked rheumy to review with a colleague). With this and the dismissive attitude from London, and the fact that there really isn't much left they can do with me, I am really worried that i'm not going to be taken seriously from now on. Not even being given steroids and dismissed is going to work.

But I will see a Dr in London again, so when as I expect everything comes back normal :( I can maybe put my case forward more strongly so they don't write back to Rheumy and say it's all because I am fat!
 
sofrustrated1990 said:
Hey star and bozzylozzy, I fully agree with you but he's the fourth gastro that I have seen so far and I'm starting to lose hope. Even my family is starting to think that maybe it is all in my head and that I may have psychological problems :$
pred was working wonders and I told him that. He simply said he doesn't understand how that it is even possible and that he cannot legally prescribe me any pred if there is nothing to treat.So now they want me to do a laparoscopy. Don't know if it will be of any help but I'm trying to remain optimistic. I appreciate your support guys, I really do
Click to expand...

Who cares if it's the fourth or fortieth GI. Fire them if they are not giving you appropriate service. I "fired" four Infusion Home Care companies for various reasons.:voodoo: I finally have a good one with a good nurse.:kiss:

When things go south with a doc, it's time to "fire" them and move on. You don't need the stress. :voodoo:

Talk with some of your other docs and see if they can recommend a better GI for you.

My neurologist was the one who referred me to my pcp. I love her. She got my pain under control and has been more than willing to write scripts etc. whenever I ask for them. She doesn't hesitate to send me to a doc if she feels I need it. She has even been disappointed by a doctor that was great for her father but not for me. I don't follow the text books and she knows it. Since I got back from our family retreat in the beginning of August, every single test I've had has showed something. Finally! After all these years, I'm hoping to gets a dx. (hopefully) Then we can move into a more appropriate treatment. For years I refused to go to the doc because they would never do test. Just say IBS (BS) and gets some counseling. That's enough to stress anyone out.

I will be having surgery Oct. 1st. The doc doing the surgery is going to add laparoscopy exploratory surgery to her list of what she's doing to me that day. She knows funky things run in my family. Never know what we're going to find. LOL:ylol2:

A laparoscopy is actually a good thing. The same doc that is doing my laparoscopy is the same doc that did my 14 year old daughters. She found my daughter's colon is more than twice the size it's supposed to be. She also found an adhesion that connected the colon to the left side pelvic wall. Ouch! No wonder my daughter was in so much pain when she tried to walk etc... The doc cut the adhesion from both the colon and the pelvic wall and then cauterized each one. She said the colon dropped a long way. Wow! When the doc came to speak with hubby and I after my daughter's surgery, the first thing she said was "she's got some funky stuff going on" LOL My daughter still has major constipation issues and coccyx pain. She has to have special seating in order to sit anywhere. Poor girl. Only 14 and she's going through so much.

I hope I've been of some help to you. If my daughter had not had the laparoscopy, we would still be barking up the wrong tree. So as you can see, a laparoscopy can be a good thing.

Blessings and keep us posted as to how things are going.

I'll go ramble some where else now.:rof:
 
hahahahaha thanks naturelover, you're absolutely right! i shouldn't give up like that. blessings to you... both you and your daughter and i really hope you get your diagnosis!
 
sofrustrated1990 said:
Hey Bozzylozzy! I'm not really good at the moment. Feeling completely drained! The pain is more constant in the lower right side then sometimes all over the place, lower back even left hand side and belly button. Do you ever feel like this as well?
Click to expand...

from what ive read, i dont think ive suffered much stomach pain vs. people who do have crohns disease (im not 100% sure i have an IBD)
the pain i get is always in the LRQ and sometimes in the LLQ - its like a griping pain - as if somebody occasionally squeezes it, but feels so sore! and sometimes like a stabbing sensation.

have you explored other avenues for the pain? - although the fact you've had biopsies that PROVE active colitis, i would be suprised its caused by anything else
 
Naturelover said:
I have hyperextension of my knees. I think that just adds insult to injury with my muscle and balance problems.
Click to expand...

i see you've seen a neurologist, have you had an MRI of your brain and spine?
I just query the balance issues along with your hypermobility..

i have both those issues and have been diagnosed with a chiari malformation type 1.
because it affects your cerebellum (balance part of the brain)
also - hypermobility if its classed as ehlers danlos syndrome (a connective tissue disorder) is highly common in those with chiari!!! they still arent sure if its genetic, but the theory is - it is possible/likely..., because ehlers danlos syndrome is a cranial gene abnormaility or something along those lines.. which i read somewhere haha! (so dont quote me on it!)
 
@cat - have fun being away for the next 10 days! im away this coming week too, so i'll not be around much either (and thanks for the compliment on the picture ;))

speak to you guys soon!! hope your tummies are on their best behaviour! mine seems to have calmed down - so fingers crossed! xxx
 
Hi bozzylozzy
With the doc we tried everything, food allergies, thought it was gastritis, IBS, Gilbert syndrome or even just plain gas as in a bubble being trapped in my bowel but none of them could explain the flare and remission. The problem just keeps coming back and getting worse as time goes by. The pain is as you describe it and I also am not 100% sure it's IBD
Hope your tummy stays as it is currently for a long while! Enjoy your time away!!!!
 
Thank you all for your suggestions and support. I am still trying out different supplement drinks, the sugar kind of gets to me... My GI appointment is tomorrow and getting nervous about that... I am still having trouble keeping down food and the pain is kind of awful today. Anyhow, I hope everyone here is having a great weekend. xx
 
Oh, sorry, biopsies. MRI was normal and c-scope visually was normal, and now the biopsies have revealed nothing out of the ordinary. So that's two sets of testing two years apart where most everything was normal and I'm pretty sure he's now convinced that the one abnormal blood test (Prometheus IBD 7) was a fluke and I most definitely have IBS. If it's possible to definitely have that, LOL.

But I guess the good news is that I am going to enroll in a study with a drug I have taken before which has worked for me in the past with minimal to no side effects. Rifaximin it's called and it's really expensive so for me to get it on the house is nice. Anyway, I'm trying to be happy and hoping it works again.
 
Mayflower, I know you must feel so frustrated, but at least your body seems to be ok. I know it doesn't feel that way though...ugh why can't our bodies just show these doctors whats going on? Anyway the drug trial sounds great, so there is a light! Keep your chin up!
 
I kind of hover b/t frustrated, and "oh, well, what the heck." Ha, yes, if I were suffering chronically as some on here are it'd be a whole 'nother thing. But I've been dealing with this stuff for a long time already. And yes, the drug trial is a good thing.
 
Yeah, I'm at the same point right now...some moments I just tell myself I'm giving up, other times I'm going "wait, my body wouldn't be doing all of this if nothing was wrong or if this was just chronic pain!". It is not fun at all. :( Mine is 24/7 now as well, which just makes it even more frustrating, but at times I just don't care anymore. Big hugs to you from Germany. :)
 
Mayflower537 said:
Oh, sorry, biopsies. MRI was normal and c-scope visually was normal, and now the biopsies have revealed nothing out of the ordinary. So that's two sets of testing two years apart where most everything was normal and I'm pretty sure he's now convinced that the one abnormal blood test (Prometheus IBD 7) was a fluke and I most definitely have IBS. If it's possible to definitely have that, LOL.

But I guess the good news is that I am going to enroll in a study with a drug I have taken before which has worked for me in the past with minimal to no side effects. Rifaximin it's called and it's really expensive so for me to get it on the house is nice. Anyway, I'm trying to be happy and hoping it works again.
Click to expand...

Hi - Danny also had the Prometheus test come back pattern consistent with Crohn's ... but most other things normal. Biopsies showed non-specific mild inflammation in several places tho. Did your biopsies show that too?
 
Hi all, Mayflower I am so sorry you have no diagnoses yet with all the test they have done. I am glad you on Rifaxinmin and it has worked for you in the past.

@ Danny if you have inflammation doesn't that mean IBD of some kind?

Went to my GI doctor yesterday and they found a fissure and this was during the physical. He believes I have more ulcers because of how inflamed my anus was. He definitely believes I have IBD but he doesn't know which one until he does the colonoscopy. He wanted to do a Sigmoidoscopy right there in his office but because I was so swollen and in pain he was not able to do it. I am waiting to here from the doctors office... To schedule my colonoscopy... I am just so scared of the unknown and I am starting to feel a little sorry for myself. :(
 
Good luck motheroftwins! The pathology report said the inflammation was non-specific and could be IBD, allergy, or an infectious etiology. We've done lots of pathogen testing (normal) and avoided foods that showed allergy without any benefit. Our GI says they simply are not sure what is causing Danny's illness ... but he does not say it is IBS.
 
Dannysmom, I just today requested copies of my MRI report and my pathology report. Last time, the only visible inflammation was esophagitis and gastritis which were both mild and chronic. Nothing inflammatory going on in the colon or TI. Pill cam saw nothing either. So that's where I am.

Had another acute attack tonight. Vomiting too. These are the times I am sure something is really wrong with me...
 
My GI said after last time, "we'll proceed as if your symptoms are due to ibs." then this time, he made it sound like my remission and flare up periods were more IBD-like, thus the testing. This has been going on atleast since I was a freshman in high school. So 17 years roughly. Seems like IBD should have been somewhat obvious by now. I think my GI has satisfied his wanting to look for Crohns for the time being. Im okay with ibs as long as something works treatment-wise. And maybe this study will require some more tests that will help clear things up? I dunno. He always pulls out the big guns right away like scopes and Prometheus and MRIs. Never took a stool sample. Strange, huh?
 
Mayflower, my doctors are just like that too. My GI would say IBS, then I would come in the next time with very obvious signs it was not IBS (like an ulcer eating through my tounge like I got a tounge piercing) then he would almost freak, order tests, they would come back normal and he would be back on the IBS train. It is a never ending frustrating cycle. :( I really feel your pain! I always tell myself to try and go with the flow and hope things get better and go where they are suppose to. One day this will all make sense, right?
 
Hello all! It's been a while since I've posted on here. In the past 2 months, I have been packing (like crazy), moved, unpacked, made 2 trips to Vanderbilt for appointments (which is now a 3 hour drive for me and I now live in a sleepy little town away from the world haha) and tried 2 more medicines which have done NOTHING but become a waste of money. My GI as of now suspects I have post-infectious IBS and prescribed me Xifaxan for 10 days and Levsin. I have taken the Levsin for a month now and had no change; still getting sick if I am not super super careful with food. Has anyone else tried these?

She also said she had no ideas as to why I have had fever for 1 month shy of a year now and has suggested I see an Infectious Disease Specialist. UGH!!!!! The rheumatologist I saw told me she didn't think it was lupus (yay). After talking with a health food store person, they suggested I try slippery elm; anybody else take this and had good results???????? I am also going to try a probiotic they recommended.

How do some of you who have been "undiagnosed" for years deal with it? What are your copeing mechanisms? SO frustrated :( Hope you all are having a good day though!!!!
 
Yes I have taken both. The Levsin I have is the kind that dissolves in my mouth. I only take it as needed. It helps sometimes, but last night it was not doing a darn thing to alleviate spasms/cramps or whatever they were. And I have also taken Xifaxan with good results. I have taken two rounds of it in the past (both two weeks 3 times a day): The first time I got about three months worth of relief, then the second round kept me good for a whole year. I'm about to try it for a third time in about 10 days. I hear a lot of people say it stops working after a few rounds, although my GI swears it's not supposed to cause resistant bacteria.

I've heard slippery elm mentioned on the boards. Maybe do a search for it and see what comes up.

I've been dealing with these very random, acute episodes for a long time. I always just figured it was part of being me. That's not much of a coping mechanism, but it's how I chose to deal with it. In fact, I always assumed my bowels were very irritable. That's exactly how I'd describe them - fine one day and hornery another. I only went to the doctor recently, in the last two years.

Feel better!!
 
Hi All, my colonoscopy is scheduled on September 13 @noon. So, I have to be in the hospital at 11... What can I expect from the scope and prep? All of this sounds so scary. I think I forgot to mention .. the GI doctor put me on Proctofoam HC for the fissures and Vicodin for pain. Has anyone else taken this? How long does a Fissure last?
 
Don't know about the fissure or the proctofoam or vicodin. But I have some scope experience. The prep isn't great, not gonna lie - you have never had such diarrhea in your life probably. Or maybe you have. ((shrug)) But, if you are prepared, then you can manage without too much discomfort. Make sure you have wet wipes and some sort of barrier cream handy, b/c your bum will get sore from all the going.

Did your doc give you the information on how long you are to fast already and which liquids are okay? Usually it's liquids (except anything red) the day before the scope up until a certain time. Do you know which prep you have to do? I took the pill prep (Osmoprep) the first time and I thought it was more "violent" than the one I just had, called Suprep. It was gross to drink, but it was doable. Hopefully you won't have to drink too much of any of the vile prep liquids.

As far as the scope is concerned, easy peasy. A nice nap. You may have some gas and discomfort afterwards, but I remember nothing about either scope. I just remember being glad after I woke up that I could eat!!

Anyway, ask away if you have more questions. Most of us have had one or more scopes.
 
Hi Mayflower, starting 9/11 after a light dinner is when I supposed to start the clear liquid diet. On 9/12 @ 12 I take half of Lytely and Bisacodyl tablets wait for a bowl movement... Then Mix solution drink 8oz every ten to 15 minutes. Ha Ha I am already confuzzled :ywow: Then after midnight eat nothing my procedure starts @12:00 but they want me at the hospital by 11.
 
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My colonoscopy is on the 11th. I have to drink a gallon of some crud. Today has been rough because last night I had to take four Women's Ducolax Laxatives. Finally clearing things out this evening. Just concerened about whether or not I need to drink the full gallon on Monday or not.
 
What they say around these parts is that once your output is clear (even if it's yellow colored liquid) you have been sufficiently cleaned out. I guess you'll have to drink until you get to that point. Hope everything goes well for ya.
 
like may said, you might not need to drink it all (thankfully lol)
when i had klean prep - they gave me four sachets, i could only stomach one of them (and it worked fine!)
on my 2nd c-scope, i had picolax - which was much better. just two small cups to drink and it cleared me out in no time, and didnt bloat!
good luck though, keep us posted x
 
just a question.. this last week i have been suffering with severe knee pain (so severe that i cant move in bed)

i know this is likely to be due to my hypermobility.. BUT.. my bowels are completely fine!?
this happened to me last time my knees got bad.
when my bowels are awful.. my knees are fine
when my knees are awful.. my bowels are fine

does anybody else have the bowel/joint issues flare in the same way?
 
Good luck to you all having colonoscopies and tests. It is never as bad as you think it will be, and you will be fine. The prep really is the worst bit, but that's over quickly. The scope itself shouldn't be too bad, especially if you opt for the sedation, then all you'll have is a nice nap! Probably quite needed after all that sleeplessness from all the prep too.

I have my pill cam tomorow at 8 am tommorrow morning, not too worried about it. Turns out I needn;t have worried about not having a prep, I'm flaring like a crazy person. Been to the loo about 11 times today :( At least I'm flaring while they're doing the test, I think my colonoscopy may have been a false negative as I wasn't in an active flare when it was done.

I'm not religious, but I'm praying for some answers here!
 
I'm here! Have been mostly enjoying my time off. I say mostly because there's been a few snags, although nothing major. I had a flat tire on the first day of my time off. And for some reason my GERD is going extra nuts today! My ph impedance test is tomorrow so I'm hoping the GERD keeps being angry through tomorrow so that they find something. I'm starting to get nervous about it though. Definitely not looking forward to having an NG tube in for 24 hours. I'll update you guys tomorrow on how it's going with the test.

Chell, best of luck with the pill cam! I'm not religious either, but I'll keep you in my thoughts, and I really really hope this gets you some answers! Keep us posted and I hope the results don't take too long.

Bozzy, yep, that sounds very familiar! My IBD, or whatever it is, is in remission, but my hip arthritis acts up whenever it feels like it. All my large joints hurt when my guts flare, but when my guts are fine I still have hip pain sometimes. It's a lot better with stretching and strengthening exercises, but it still acts up at times - particularly when I try jogging. And my GERD goes haywire independent of what my guts are doing too. Although I will say, I do get fewer migraines now that I'm in remission, so I think the guts and the brain stuff are related somehow.

Naturelover, good luck with the prep. And I concur with what the others said, I've always been told that I just need to be going clear (yellow liquid poo is okay, but no little "bits" of fecal matter). And when you think about it, they prescribe the same amount of prep for a 300 lb man that they do for a 120 lb woman - and they prescribe the same amount of prep whether you have healthy bowels or whether you're already prone to going 20 times a day. So yeah, I would think the full amount definitely wouldn't be necessary. Just keep an eye on what's coming out of you, and when it's clear of any bits, you should be able to stop and be just fine on scope day.

HannahN, it is hard to cope sometimes when you're undiagnosed for so long. I'm very lucky to be in remission so things are a lot easier for me these days, but I had a long time where I was struggling a lot. The best coping mechanism I was able to get out of my experience was to just take things day by day or even hour by hour or minute by minute. Don't get caught up in what the future holds because it's so easy to get pessimistic. I would have thoughts like, "What if I just keep flaring and am sick forever and this is all that the future holds for me for the rest of my life?" I really had to make myself stop thinking like that and not look to the future, just concentrate on the present. Make yourself as comfortable as you can during the bad times. Stuff like heating pads, a pet or a stuffed animal to cuddle with, a hot bath - just take care of yourself in the moment, and don't stop fighting for answers. That's how you make the future better - keep fighting!

I don't have time now to respond to everyone, but I'm sending big hugs to all. I'll be around the forum tomorrow during my test and I invite you all to join my pity party :p Just kidding, I hope it won't be as bad as that, but I probably won't be very comfortable either. "Talk" to you guys tomorrow, and wish me luck with the NG tube!
 
Cat, hope your test goes well and that the NG tube is not too terrible. Hope you get some answers!

I got my MRI report. It has calmed me, somehow. It's very detailed and specific, and outright says that there is nothing indicative of IBD. It's the whole picture of my abdominal insides, and really, it's put my mind at ease. I trust it, for some reason. :) It did see my hemangioma. Only one, so maybe the rest of them shrunk or something.

Hope everyone is hanging in there.
 
Thanks Cat, hope your test goes well today, thinking of you too! I just swallowed the pill, nothing to worry about! It was smaller than I had imagined. It's so odd, i think i can feel it going through.
Just a quick post today, on phone, so sorry for any errors.
 

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