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Undiagnosed Club Support Group

Apparently it is most useful when a patient is aneamic through suspected bleeding in the small bowel or something like that. In other words I don't fit the profile (but when does IBD ever neatly tick the boxes?) Needless to say there goes my best chance of being diagnosed. So upset.


Are they going to run any other tests? I'm am so sorry Star. I know how you feel, this classification of diseases is so complicated that putting it in such strict categories isn't the best way to do it in my opinion. When they told me they weren't running any more tests I was upset. I really hope they keep looking for you...:(
The other thing planned was to test my bacteria levels, but the machine is broken and won't be fixed until the end of April. I expect it to be normal anyway.
I have heard back from my GI's secretary and she is going to speak to him and get back to me.

Cat, I am pleased you have some news although it's not the best- but I think you'll agree in our situation any news is good news :)
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I am so sorry..don't give up though. Keep telling your doc your symptoms. Thats my plan anyway. I feel like someone eventually has to realize something is wrong, that its more than IBS. But if it is IBS, that isn't always a bad thing either...but I know how you feel, I really do! Somehow this is all going to work out. *hugs*
Undiagnosed after 1 1/2 years of testing! Symptoms include...but are not limited to...

Stomach aches after eating
Night Sweats
Cold Hands and Feet
Back Pain
Fluctuating Fatigue
Brittle Nails
Severe stabbing pain around anus
Heart Palpitations
Anxiety & Irritability
Canker Sore
Minor pain and numbness in fingers/heels

As a result of several tests I have been told I have swelling and irritation from my esophogus through my entire GI tract to my colon. I could have told them that.
Keep smiling 21, I am very sad to read you've had to suffer these nasty symptoms for 1 1/2 years and still have got nowhere! I just don't get it, if they've found inflammation throughout your digestive system, surely they should be looking for the cause?

You aren't alone here though, sad though it is to say. I've been ill for 14 years and still haven't a diagnosis of anything!

Big hugs


Super Moderator
Hi Keepsmiling and welcome to the forum and the club. Are you having any more tests done to try to determine the exact cause of your inflammation? I hope you are able to get a proper diagnosis and some treatment & relief very soon! All of us in this club know what it's like to go through many tests and still not have answers - I've been sick for about a year and a half myself now, so I understand what you've been through - I've been through it myself, and it sucks.

Heidi, 14 years?? You poor thing, I knew you'd been sick for awhile but I didn't know it was that long! I can't even imagine, that's so horrible. I've only been sick since Oct '09 so I feel like a relative newbie to this illness. I'm assuming that in 14 years you've been to probably every doctor in your area, right? Do you have a plan as to what to do next in your fight for a proper diagnosis? Do you have a good doctor now?
I have a cat scan of my gall bladder next week. I've already had an ultra sound and a HIDA scan on my gall bladder to check for stones and functionality...which of course came back normal. With that said I'm not holding my breath for this cat scan.

There has to be a reason my entire digestive system is upset. I can't believe that they can find no cause. It's exhausting to be nauseated 24/7. I can't even imagine not knowing for 14 years. You must be so strong!!!
i hope there is room for one more! I just joined this foreum a week or 2 ago! i too am undiagnosed.....however i am being treated for crohns! I wont go ito a super long story but will say that i have been suffering with chronic D for years, and then about 3 years ago is when it all went very bad for me....
hospitalized for a perianal abscess
needed emergency surgery but needed blood first
got drains put in
severely anemic
2 units of blood
daily iron infusions
still chronic D
in hospital a total of 10 days
iv antibiotics, and then sent home on both cipro and flagyl
srated on 16 pills of asacol a day
had a colonoscopy
small bowel follow through
numerous ct scans
( all came back normal, and never showed any fistulas!!)
3 moths later ended up needing surgery again
to repair the fistulas that were going to have abscess again
comtinued to lose weight
gi doc talked about immuno suppressive therapy, but i found out i was prego
had a great pregnancy, ganed 28 pounds( good) but not much gain for my pregnancies, was still anemic through preg, continued asacol and prilosec
had my son in 2008 and it all started again
severe D
upper endoscopy (neg) do have a hiatal hernia
3 months ago got really sick
total weight loss since sept of 2008 60+lbs
weight loss in 9 months 20+pounds
had emergency colonoscopy in dec
only found ulcerated fissures and hems( knew i had hems), and lots of rectal inflammation
had surgery to remove hems, and an anal sphincterotomy....should have never done it....stil have some pain not excrutiating, but because of the D, i npow am incontinent atleast once a day if not more
my doc is not convinced its crohns...but switched me to 4 pills of lialda a day
severely anemic again....2 more units of blood and a total of 8-10 iron infusions
folic acid fluctuates....low-ormal
b12 is borderline
gi doc thinks its sever IBS
i am sorry i did end up telling a ton but tried to not add so much detail
i had the pill cam done 2 weeks ago( no reults yet) i was told it takes over 57,000 images....wow thats alot
UGH.....i am going crazy....i really dont think this is ibs
and my doc said "i dont think your making this up" No s@#t im not making it up.....
i am so frustrated and just cry all the time, i cant live like this and not know what is wrong with me.....i am 5'11'' and weigh 135lbs give or take....never have ever been this size.....my normal weight before kids 165
what do you all think???
Mixed news for us all, then, some good some frustrating. Had my barium test last Wed but still waiting for the official result. Think my GP is on holiday: she's been on Facebook a lot! Lol.
I worry that if this is Crohns and a flare, what damage will going untreated do? I'm doing what I can by cutting foods that aggravate my symptoms, but they seem to be developing anyway. Eating in general is giving me pain and this week I've had migraines, back pain and achy legs and hips.
My car is about to die, can't afford a new one which would mean giving up my job so the stress of that is not helping :grumpy:
Ah, it feels good to vent! Wishing better news for you all.
Helen x


Sherry3535, what a story! I cannot believe after all of that they still think its severe IBS. I have been told twice, once at 17 and now at 21, that its severe IBS due to normal test results. I cannot believe after all you have gone through they are telling you the same thing! O.O
Totally understand your concerns grumbletum. But i've had IBD since I was 19 for sure (possibly had early signs at 16,17) and my CRP has only just gone up after being stable for 4 years, and after a whole 6 months of feeling alot worse and worse symptoms.
I had what I call a "patch" treatment from age 20 but I feel it's not working now, for about 8 months perhaps.
So, it may make it worse or it may not, sorry if I am not much help, just trying to reassure you :)
Thank you, Stargirrrl :kiss: It really does help not feeling so lonely in this limbo and it's good to talk. I know you must be gutted ( oops - bad pun! ) by your recent cancelled test and I don't think doctors appreciate how helpless patients feel when they know in themselves that there is something very wrong with their bodies. Btw, what is 'CRP'?
Keepsmiling hope all goes well with the CT scan and that it will lead to the road to recovery for you.
The CRP is C Reactive Protein which measure inflammation in the body. Can't tell you where it is but that it is there so to speak. Drs do argue about normal values but seems to be 0-5 or possibly up to 10.
I have another clinic appointment next week to see GI. Unless he is super helpful and/or supportive it will be a parting of the ways I feel. I certainly feel in his mind that the normal tests are outweighing the abnormal and not letting that happen again!

(btw it is so hard to avoid puns in with these illnesses lol)
Keep smiling,
Good luck with the ct scan today! I really am praying that you ge some type of answers!
it really sucks to be going through what we are all going through!
I am still waiting on results from the pillcam! I am so frustrated cuz it has been over 2 weeks now! I hope to get the results this week along with some answers as to what thw heck has been going on with me! I am at a low, worse than I ever have been, the complications from the last surgery are horrible and I don't know if I can live with episodes of incontinence on a daily basis! Thank god for my kids! They are whar keep me going!
Good luck to everyone in getting a diagnosis.
Not sure whether I belong on this forum, or where it is I do belong anymore as they have not been successful in finding Crohn's for many years. It's been a few months now and I have been too afraid to get the full results/details of my last test...hearing only that it was normal via a brief phone call. Guess with each normal result I feel I'm another step further from getting an answer but further into a depression for which I'm now in counselling for. Since becoming so sick the first time, it's had a domino effect on all aspects of my life and I'm now left trying to figure out what happened and not even knowing how to start picking up all the pieces. It has affected everyone around me for which I am deeply sorry for. Aside from the weakness and worsening blood work, I have improved in other ways...or things have at least changed...so guess I can't complain. It's just so hard to move on when you're exhausted and unsure of what the next day may bring. Sorry to sound so low - there are so many others on here going through much worse and I feel I'm just wallowing in self pity. I have so much I am truly grateful for and know how much worse things could be. Thanks for listening.


Super Moderator
Quick update on me: I just saw my GP today to have a physical and follow-up about my hip arthritis. When I last saw him, he had done some blood work. He got the results back and said that he doesn't see anything in the bloodwork that would indicate my arthritis is autoimmune or linked to my tummy troubles, but he did agree that I'm a bit young (31) to have wear-and-tear type arthritis. He did say my CRP is 17, so there is some mild inflammation going on in my body - not sure if it's the hip or the guts or both or neither. For now, my GP still wants me to go to physical therapy for my hip (have an appt in April) but he's not going to send me to a rheumatologist yet. I have a GI appointment in May so I'll discuss my CRP and my hip with him then.

Keepsmiling, I hope your CT scan went well! Hopefully you get the results back quickly - when I had mine last year, they told me the results themselves take about an hour (although your doctor has to look at the results, so it might take a bit longer than that). My hubby just had a CT scan last week and the results were back in like 30 minutes with a positive result - he's got kidney stones. So I hope you get a result back quickly and some answers!

Sherry, it can take a long time to get pill cam results - I was told it takes up to a month and I think it took about 3 weeks for me to get my results. Hang in there, and I hope you get some answers too!

Same old thing, you belong here! This forum has never turned anyone away because they're undiagnosed, and certainly I think you belong in this club! It sounds like you're pretty depressed, which I think most of us have struggled with or are struggling with. I know I've been there and it's hard to feel positive when you're sick all the time with no answers. Please talk with your doctor about this - I was put on a low dose of Amitriptyline (25 mg) which is an anti-depressant - I was put on it to control my headaches, but I've noticed that since I've been on it that I haven't felt nearly as depressed. I still have my down days of course, but in general I feel a lot better mentally and emotionally since being on it. Other benefits of Amitriptyline are that it helps me sleep (has a sedative effect so I take it right before bedtime) and it also supposedly calms the guts. I don't know if it has calmed my guts or not, but it has affected me positively in other ways. There's quite a few of us on the forum who are on Amitrip, and most of us seem to have had good experiences on it. There's no shame in being on an anti-depressant or in asking for help when you're down. We can help you by supporting you, listening to you, and sharing our experiences with you - but it sounds like you need a little more than that. Please, do talk to your doctor about what you're going through.

And as far as you being sick for so long, I have an aunt (by marriage) who has had similar symptoms to mine for as long as she can remember. At least 30 years. She's had test after test with normal results, she's gone the natural route, she's gone gluten-free, she's done whatever she can to try to control her symptoms. Finally about a year ago she had a colonoscopy and they found "scarring consistent with Crohn's" and diagnosed her with Indeterminate IBD (apparently they found enough evidence to say it's IBD but not enough to say it's definitely Crohn's - which I don't get!). So it took her 30 years to get a diagnosis and 30 years of normal test results, and she kept fighting. And that's what you've got to do too! I know that normal test results are one of the most frustrating things ever, but you can't let it stop you from getting answers. Please don't give up the fight! And just because your problems aren't as bad as some people's, that doesn't mean that your pain & symptoms aren't legitimate or don't deserve attention. You deserve answers and relief as much as any of us!

Sorry, that was long. I tend to ramble on sometimes. ;)


Super Moderator
Oh, and I forgot to mention: before I became ill, I weighed 136 lbs. During the first year of my illness, I lost about 20 lbs. Being on Entocort for the past few months, I've managed to regain some weight. I was weighed at my GP's office today, and I am 137! I am back to my "healthy" weight! I'm pretty happy about that! :)
Many thanks for your support and kind words Cat-a-tonic. I will one day fight for answers again especially now I have such a wonderful team of Drs...I just have to build up the courage. My previous Drs were condescending and in some instances downright cruel in what they were telling me... it's these kind of comments that have stuck with me and become harder to shrug off and move on. It wasn't until I moved location and GP's that I was treated with any respect and then inconsistencies were found in prior tests. Right now it’s hard to find the motivation to deal with a whole lot, but hopefully I’ll get back on track soon. I am on anti-depressants but not getting very far with them yet, but I will look into the meds you suggested.
It's great that you have regained weight ... that's always a good sign that things are maybe improving and I can imagine it would feel great to have that weight back on. I’m regaining too…but it’s taking a long time!


What anti-depressants are you on sameoldthing? I was put on zoloft at first and it made everything much worse. My GI told me it wasn't good for people with symptoms like ours because its side effects is tummy troubles.

I'm now on Amitriptyline and its not making it worse, but its not making it any better either. Its finally time for me to call my GI and tell him its been a month and its not working! I know all he is going to do though is up the dose.
I understand it takes some time before you notice any appreciable difference - would be nice to get immediate results. I'm on Cymbalta but haven't decided whether it's doing a whole lot yet. It's actually having the opposite effect on my stomach though, and not so sure whether it's a good thing or not as now nothing seems to be moving through!


Thats not good. :( I know I personally would like the D to stop (going ten times a day is not fun), but when I first got symptoms at 17 it was the opposite...and that isn't good for your body either! Yeah it can take up to a month for anti-depressants to help, and I've been on them a month now with no help. At my worst I was having D every time I tried going to the bathroom..about 12 times a day.

The reason I was put on Amitriptyline is because they think it can help the symptoms of severe IBS, such as the pain and the D. Neither has ceased though unfortunately. I haven't seen any mental changes either. I'm like the rest of you...this stuff can be downright depressing, and I've been very upset in the past few months because of it. The depressing part is trying to get a diagnosis and a good doctor that sticks with you through the normal test results! Which is crazy because you would think that the actual disease would be the hardest part.

They have opened up a new digestive disease center in Atlanta GA, my hometown....I am so excited about this new center, and I can't even go see them at the moment. ~.~ They offer all of the new innovative testing procedures, including the pill cam. I am kicking myself right now for leaving home to be with my husband through this, but I'm hoping I can get my military health insurance to approve going there and getting some kind of test on my small bowel when I go home to finish college. I'm not giving up and I'm really hoping none of you give up either!!


Super Moderator
Allie, I hope you are able to get into that new center, it sounds great! There's not anything like that around here (unless you go to the Mayo Clinic in Minnesota) so I just go to the local teaching hospital but fortunately they're pretty good and have some of the more high-tech tests such as the pill cam. I'm definitely not giving up, in fact I feel pretty energized by the fact that I've been diagnosed with arthritis AND I have a raised CRP. I feel like I'm taking baby steps towards a diagnosis, but at least they're steps in the right direction!

Same old thing, sounds like the Cymbalta isn't doing much to help you. :( I did some googling and it looks like it's in the SNRI family of anti-depressants. I think Amitriptyline is a tri-cyclic anti-depressant and I believe anything in the tri-cyclic family tends to be more calming on the guts than other types. I just googled the side effects of Cymbalta and it says that diarrhea, constipation, abdominal pain, nausea, etc are all common side effects. Doesn't sound like a good one to be on if you're already dealing with that type of symptom! Here's the link I was looking at if you're interested:

I also found this link to a thread in a different forum about how tricyclic antidepressants (such as Amitriptyline) can be beneficial for IBD:

I hope that helps! If I were you, I'd talk to the doctor about getting off of Cymbalta and onto something in the tri-cyclic family.
Hi everyone, i just signed up today and reading about so many symptoms and experiences that somewhat reflect my own.

It started in January 2010 when i thought that a spicy curry i had was responsibile for my cramped tummy and visits to the bathroom. It was a spiral slope from there, after numerous blood tests from my GP i was reffered to a gastro specialist who then sent me for an endescopy and a colonoscopy but had told me it was likely IBS. The colonoscopy which i was sedated for was sheer hell and i woke up mid way through with the worst pain i have ever experienced, even child birth wasnt as bad. They told me they werent able to do the colonoscopy fully as my intestine was so tight (this was after 4 of them holding me down and trying for 5 mins) but did tell me my lower bowel was inflammmed.

I waited 5 weeks for the biopsy results and the specialist then wrote to me telling me the inflammation rasied the possibility of IBD and put me on Asacol. This has really helped me alot but the joint pain and weakness has returned making me feel so tired all the time. I am due an appointment next week with the specialist but i am not hopeful to get any further knowing whats wrong with me than i do just now.

sorry for babbling on

Sorry to hear that you are undiagnosed. I went 5 years with symptoms before they actually figured out it was Crohns.

If you don't mind me asking--how many mg of Asacol are you taking? I take it too and I take 800mg 3x's per day.
Hi lee, i was to start with on 2x 800mg 3 x per day for 6 weeks then they reduced me to 1 800mg 3 x per day. It really settled the diorreah at the start and i felt great, but gradully the cramps have returned in the morning along with diorreah just a tad. Does it work well for you?
Undiagnosed After 2 Years of Feeling Lousy

I guess I'm a member of this club because I'm still waiting after 2 years of feeling sick. I posted "Still Undiagnosed and Worried" on the general discussion board. I go into a lot of detail there. I'm glad to have you all to talk to - people that are going through the same/similar things always helps. I'm waiting for the hospital to call me with my appointment date/time for the pill camera test. I suspect CD or Celiac, so I hope this next test gives me some answers so I can start a treatment plan. I really want to be well again - or at the very least to be able to feel more healthy than I have these past couple of years. God bless.
Hi all!
Being undiagnosed sucks.

Sorry for the slow response. I stopped taking Asacol a little bit ago. It really plugged me up and I started having to take too many laxatives. Other than that I feel it helped me--I cut the dose the doctor ordered down by half and now I'm off it. We'll see what the doctor says when he does his next scope:)


Super Moderator
Hi Naturegirl, welcome to our club (and sorry you had to join us). Your description sounds a lot like my experience. I've been ill for about a year and a half now with no real answers. My doctor initially suspected CD or celiac also - celiac has since been ruled out, but I don't yet have a definitive diagnosis. I had the pill cam maybe 6 or 8 months ago, unfortunately it didn't show anything out of the ordinary. Whatever I've got, it's hiding pretty well! :(

I hope that when you have the pill cam, it is able to give you some answers. Have you had an endoscopy with biopsies to rule out celiac? I was told that test is the "gold standard" for diagnosing celiac. I had that and also the blood test and everything was normal, so I was told it is definitely not celiac. I understand that it's still possible to have a gluten sensitivity (that won't necessarily show up on the biopsies, but celiac itself will) but since breads & pastas are some of my "safe" foods that I can eat even when my symptoms are flaring up, I doubt I've got a gluten sensitivity either. Have you tried going gluten-free for a week or two to see if it made any difference?
I've had 2 endoscopy procedures (October 2009 and last month). They did biopsy both times, but never mentioned Celiac. Do they have to be specifically looking for it in a biopsy? Or would it (Celiac) have shown up if it were present? I think I will try going gluten-free for a week and see how I feel. Thanks so much!


Super Moderator
Naturegirl: If I were you, I'd call or email the doctor who did the endoscopy and say you're confused about the results of the biopsies. Ask if they were all totally normal, and if so, does that mean that celiac has been ruled out? That's what I asked, and I was told yes they looked for celiac (I believe that's one of the things they routinely look for so they should have looked for it in you too), and yes all the biopsies were totally normal and none of them indicated celiac, so therefore no I do not have celiac.

My understanding is, celiac is pretty uniform when it presents, so it doesn't "hide" or have a skip pattern the way Crohn's does. So if there were celiac, they wouldn't have to search it out. Crohn's can present anywhere from the mouth to the anus, and it can have a skip pattern, meaning it can appear in some spots but other spots can be normal and healthy. That seems to be why CD is so #$%&* hard to diagnose, since it can appear anywhere in the GI tract and if it's mild or not very active, the whole GI tract might look normal and in that case doctors have to rely on biopsies - but since there is a skip pattern, they'd have to biopsy the right spot in order to find it, and that would be a big guessing game! That's my guess as to why they haven't found anything in me yet, it's just mild enough that they can't visualize it and it's evaded being biopsied thus far. Whatever the case, it's frustrating!!
To be honest, I'm not sure at this point if I'm diagnosed or not! I posted a recap in the intro forum ( oops it won't let me link it here yet)

But I've had pretty much every test known to man. I have consistently high crp and sed rate, and all the symptoms of an ibd, but the only noted lesions have been in my mouth. Even the gi says " well it acts just like crohn's". With lung complications making me have to up the prednisone again I'm feeling really grumpy about it all. Bleh.

Eta: the one thing that's been different for me is I had a rapid weight GAIN, even with going all day and night. Yuck!
Unsurprisingly not responding to the meds I was put on- spasmonal and domperidone- told GI they are not working and making me feel very very sick but I will take them for a few more weeks, if still not working I will not get a repeat of those meds.

Got a liver and gallbladder ultrasound Thursday and my Rheumy is going to try and get me a FDG-PET scan. Very happy at the prospect of the latter, if inflammation comes back lower left like the WBC scan I have a much stronger case! (they said WBC was positive, then a year later after other normal tests said it was not).

In the meantime the pain is getting quite bad at times, driving me back to bed in the hopes of sleeping it off, so bad i have actively considered A&E again, even after a poor experience, but after a few hours it tends to wear off, until the next time.

I seem to be living on bread, crumpets and plain pringles the nausea is so bad, and I am barely eating, yesterday I had 2 crumpets and a packet of crisps, and feel the weight is dropping off me, no scales so won't be weighed until next Hospital appointment.
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Super Moderator
Hi TheMrs and welcome to our club. How awful to not be sure if you're diagnosed or not! I hope you get some solid answers soon. Are you on any treatments besides pred?

Star, anti-spasmodics didn't do anything for me either, although I also had to try them to see if they worked or not. At least now you know they don't work and you can move on from there, right? Good luck with your ultrasound and I hope you are able to get the PET scan! I'm having a liver ultrasound myself next month because they found some weird benign tumor thingies ("focal nodular hyperplasia" is the proper term) on my liver. I'm not sure what caused them but I know that IBD can cause liver issues sometimes, so I'm hoping this is yet another piece of the diagnosic puzzle. If I can just keep putting the puzzle together, eventually it'll be complete and I'll have a diagnosis - I hope!

That's ridiculous that they're now saying that your WBC result is negative. I know you were thinking of going to another doctor and/or filing a complaint or possibly a lawsuit against your current doctors, have you made any progress with that?
At the moment I am keen for a second opinion outside of my current Hospital, as it was at a meeting with all the GI staff and 2 radiologists where that scan result was changed.

I've found a GI specialty NHS centre, it would involve travel, would be hard, but possible.

At the moment I think it best to hold off until I hopefully get this scan, which again hopefully will have the same result as WBC scan! I still wish to make a complaint about the scan issue, it's kind of in progress, but again wondering now if it will be best done after the new one. I certainly want to make bosses at Hospital aware how he is bending things to suit his agenda.

The actual lawsuit I am saving until after the proper diagnosis is given, I have been keeping a log of events for a year now, it's 30 pages, you know, all the screw-ups etc.

I am dissapointed the meds haven't worked, but every IBS med that doesn't work is a point in my favour as far as I am concerned! Another few weeks and will be able to tell if the others are working.

And if the gallbladder scan results in my gallbladder needing to come out, well I hope that will be in my favour too, especially if they could tell it was from CD, which I understand can screw it up.

(I think you posted after I edited my post lol)
Cat, yes, I take lialda, imuran and plaquenil as well. I'm actually waiting on a call from my rheum to discuss what tweaking we will do on recommendation of the pulmonologist. At least all three ( including GI) are in the same practice now, so they actually communicate!


Super Moderator
Star, you're right, I think I was writing my post as you were editing yours. Oops! ;) I hope you're able to keep some weight on you, I know that's much easier said than done. I couldn't gain weight no matter what I tried and I kept losing too, gradually lost a little over 20 lbs during the course of a year. I wasn't able to regain any weight until they put me on Entocort - now I'm in danger of gaining a little too much! Oh well, I'm fine with that - it'll probably just come off me again when they take me off of Ento next month.

Oh, and this is kind of random, but you mentioned Pringles - I'm actually eating some myself right now! But I find that I have to chew them really well until they're mush or they feel like they're scratching up my intestines as they go through me. Other types of potato chips don't have that effect, just Pringles - have you experienced anything like that?

TheMrs, how wonderful that all your docs actually communicate! My GI and GP are within the same system but there have been lots of communication issues between them (both with them communicating with each other, and with them communicating with the hospital). At one point my GP's office called me and said that the two docs agreed I should have a certain test, and they said I should call my GI to schedule it. My GI's office said no, call the hospital. The hospital said call your GP, the GP said call your GI... it went around in circles, I made numerous calls every day for over a week before it was finally straightened out! Also, my GP has the same last name as another GP within the same system, so for awhile all my records were being emailed to the wrong GP. No wonder they can't diagnose me, they can't even communicate with each other!
Hey all,

SO glad to find this thread!! I am going out of my mind with being diagnosed then undiagnosed then not sure then undiagnosed again! I've had plenty of tests done for my doctor and old GI (now retired, wish he was back) to say that what is going on isnt IBS. I was diagnosed with Fructose Malabsorption a few years ago but have that under control. I used to get D about once a month and had times where i would go to the bathroom 5-6 times a day but not D. I have the gene markers for CD and for Coeliac, my biopsies were ''suspicious'' for Crohns apparently? But all other tests were clear. My liver enyzmes were slightly elevated a few times and on some blood test i came up borderline positive but im not even sure what that was about?

But this doesnt seem to have been written down anywhere so my next to GI's dont think anything is wrong. I have pain on my right side, tender ribs, tiredness, bad constipation and have even a bit of blood sometimes in there. I used to have anal fissures when i was little and always have had trouble with my stomach. Im 24 now and was put on Salofalk by my previous GI. I used to also go days and days without a bowel movement but am on track since i saw him. I feel like this is all in my head. Now the third GI i have seen says its lazy bowel and doesnt want to put a label on me yet and wants me to stop the medication. He said for me to try metamucil once a day for a month to see! I dont need any more fibre! He doesnt understand that i am going to the toilet its just not without effort and pain. The D came back after I went off my meds the last time but he doesnt think the medication is even working. Before I was diagnosed I did go to the ER once with excruciating stomach pain but it wasnt anything. Then I had it a couple of weeks after but not as bad.

My doctor was furious with me for stopping the Salofalk the last time I did and said I could get really sick down the track. My first GI was a really well established and respected man in his field and was extremely thorough. These two new ones dont seem to listen to me? I dont know who or what to believe anymore!?
my doctor said my biopsies were not completely normal but not abnormal enough to be considered to write down or something! i feel like its all just me and maybe even my own doing from years back in high school when i wouldnt go to the toilet! but even still i feel like something more is going on


Super Moderator
Wow, Kiki, it sounds like your doctor is kind of like StarrrGirl's - ignoring anything abnormal and only focusing on the "normal" test results! If I were you, I'd ask your GP to get referred to a new GI. One who listens and doesn't ignore certain test results! Where are you located? If you tell us what country/area you're in, maybe someone near you could provide some recommendations for good doctors. Are you able perhaps to get in touch with your old GI, the one who retired, and see if he could recommend a new doctor for you?


I'm so sorry Kiki. :( For those old test results to be ignored sounds so sad. I know everyone in this club is just as frustrated as you, and I'm hoping they realize their mistake soon. I agree with Cat, you should get a second opinion! It seems like you have to find a GI who knows Crohn's and IBD well; if they think the disease fits into a certain criteria, it makes it so hard to get a diagnosis. :(
I'm from Melbourne, Australia. I'm actually going back to the doctors on Saturday to see what she says. But I just don't know. I have a feeling she might end up being like well thats two second opinions so maybe they r right. But she didnt like the second GI she referred me to. He was the one who took over from my old one.

She said every patient she had sent to him came back with the same opinion, that he they sort of fed him the answer and were telling him what what he should believe is wrong with them. He is relatively new into the field as well. So she sent me to this next guy who has a better reputation but what kind of a specialist sends someone with suspected crohns off with a prescription for Metamucil?

I keep thinking there has to be some reason in the first place for my original GI to suspect crohn's or he never would have put me on medication? How can this new one just come in and stamp all over two years of what another specialist said? You would think that maybe one out of the two new ones would actually want to investigate as to why i was somewhat diagnosed in the first place?

I am actually somewhat insulted that i was given the metamucil. It's like he is saying stop being a baby take this and everything will be better. If it were so easy then why wasnt I just given an organic fibre supplement to 3 years ago! Would this all be gone now?!
Hi everyone, ultrasound of gall bladder and liver today was fine as expected; they also passed my kidneys! I hope this increases the possibility of an IBD diagnosis but to GI probably more evidence of IBS!

Fingers crossed I can get that other scan.


Super Moderator
Kiki (and this goes for StarGirrrl too): It seems like some doctors just have to have their way, even if they're wrong, you know? Like, they're doctors so they get a little bit of a god complex and think they're smarter than their patients and what they say is the absolute truth, even if there is evidence that says otherwise. My grandfather is a retired judge and he's definitely got that mindset. He loves to argue with people and he almost always gets his way because he's 100% sure that he's right, even when presented with evidence to the contrary. I think it's just a personality thing, and if your doctor is stubbornly sticking to IBS and is ignoring what your old doctor said, then it sounds like it's time to dump that doc and get yet another opinion from a new doc. Just chalk it up to "irreconcilable differences" or whatever you'd like to call it. Just my two cents!

Star, I hope you can get your scan! Glad to hear your gall bladder and kidneys and liver look fine, at the very least that's three more things to check off the list of possible causes, right? I hope your GI comes around to the idea of this being IBD, but if not I hope you're able to get in to that GI specialty center you mentioned in an earlier post.
I have a theory, and I almost hesitate to share it because I don't want to offend anyone, but it's been my family's experience that doctors ( particularly older male ones) take men patients much more seriously and are more inclined to think women are just attention/drug seekers or something. They can be incredibly patronizing. My mom is a tough as nails retired RN and several years ago I took her to an early rheum appt and when he left she said " boy was HE paternalistic!" he intimidated even her.

Eta; of course I know that's not true for ALL docs, just our experience.
I've realised my GI is not looking seriously at IBD now (at least to my face). Obviously unhappy about it but i've accepted it now so is a bit easier to deal with.

So, I look to the new scan and the second opinion as my game plan, but will show willing with GI in the meantime. Not heard back yet re meds from him, I said would do 2 of them another 2 weeks but really hope I am told to stop now!

Also the fluexotine should work soon if it's going to, so will know where I stand with that. Even if it works, do not think it will solve the problem since the Amitriptyline worked a bit for a few years, so who's to say history won't repeat itself!

Still far, far too much doubt in my mind to accept IBS even if it works.


Kiki (and this goes for StarGirrrl too): It seems like some doctors just have to have their way, even if they're wrong, you know? Like, they're doctors so they get a little bit of a god complex and think they're smarter than their patients and what they say is the absolute truth, even if there is evidence that says otherwise. My grandfather is a retired judge and he's definitely got that mindset. He loves to argue with people and he almost always gets his way because he's 100% sure that he's right, even when presented with evidence to the contrary. I think it's just a personality thing, and if your doctor is stubbornly sticking to IBS and is ignoring what your old doctor said, then it sounds like it's time to dump that doc and get yet another opinion from a new doc. Just chalk it up to "irreconcilable differences" or whatever you'd like to call it. Just my two cents!

Star, I hope you can get your scan! Glad to hear your gall bladder and kidneys and liver look fine, at the very least that's three more things to check off the list of possible causes, right? I hope your GI comes around to the idea of this being IBD, but if not I hope you're able to get in to that GI specialty center you mentioned in an earlier post.
I agree with this. My regular GI, even though he was being told my swelling and fever, and was telling me to go to the ER, was still saying "Its IBS and if the amitryptiline doesn't work I don't have any way to help you." >.< It seems like once they make up their mind its hard to change...

Star, I'm so sorry you feel like you are at a dead end! I am in the same exact boat (I have a thread in the support forum if you would like to catch up :p). I had an ultrasound earlier this week and mine was the same exact way, everything looked normal. I even made sure they took pictures right over the spot that was inflamed and feverish and it showed nothing. Many hugs to you!!!
Don't worry been following your thread carefully :)

I expected my ultrasound to be normal since they were checking my gallbladder and liver and nothing ever came up on bloods for those.

I think ultrasound is an important tool but it has limits, I think it can pick up anything on the surface but not any deeper.


I agree about the ultrasound. I didn't expect anything either, and was kinda mad I was stuck in the hospital for those kinds of tests! Sometimes I wish I could tell docs to skip certain tests to see if they could find the cause different ways.
Okay, been a little while since my update...

3 weeks ago I went to see my GI and found out that I had a nasty infection so she loaded me up with all sorts of antibiotics. I've been off of them for a week now.

Also with in the last 2 weeks I feel like I need to have a BM but what comes out is flesh/blood type stuff.

I saw my GI 4 days ago and she said the infection looked clear but she just doesn't like the look of things so she's going to do a scope/surgery where she will scrape my intestinal walls (because she said they're so inflamed I am shedding them) and doing more biopsies of my colon. That will be next Friday.

I am really hoping that something good comes out of this surgery! Has this happened to anyone else?


Super Moderator
Star, when you say Amitriptyline worked for you for a few years, do you mean that it helped your gastrointestinal system? I've been on Amitrip for about 7 months now, and it's fulfilling its original purpose, which was to control the chronic headaches that Entocort caused. It also helps me sleep at night. But I do not think it's done anything for my guts. My GI seemed to think it would help "calm things down" but it doesn't feel like that's the case. Entocort is (sometimes just barely) keeping my guts in check, but I don't think the Amitrip added any benefit there.

Allie, have you heard anything further about the pill cam yet? I know in your other thread you said that the head doctor at the German hospital wanted you to have the pill cam done. I hope he comes through for you on that!

Kait, I haven't had anything like what you're describing - I've passed lots of mucus and sometimes very small amounts of blood (my blood is likely from either a hemorrhoid or a fissure) but nothing "fleshy" like what you describe! Sounds horrible, especially the part about shedding intestinal tissue, but hopefully if you're passing something like that then they I would think that they'd be able to figure you out pretty quickly! I haven't heard of the surgery you're describing either but I hope you get some answers from it. Good luck next Friday, let us know how it goes! I'll keep you in my thoughts!


Nope, not yet! My appointment with my GP (required here if you end up in the hospital, follow-up with military docs basically) is Monday and my appointment with my GI is the 27th. Keeping my fingers crossed and making sure I am prepared to make my case!

Kait - I have had the flesh thing happen to...it was really weird and now what you are describing makes total sense. I thought I hadn't processed the gummies I had eaten the first time a flare caused it, but I definitely haven't touched something like that this time and it is happening. I have heard of the surgery, it was mentioned for me a few months ago for exploratory purposes, but it seemed more like a threat in my case (they basically said "If you don't shut up and accept our IBS diagnosis we are going to cut you open" with how they were treating me). It sounds like it could help you! They make a tiny incision and it doesn't seem to be very invasive. I wish you the best of luck!!
Cat- well before I went onto the Ami I was taking 2 colofac a day to feel hungry and 6 lopermide a day to keep food in (otherwise was going straight through me).

It did relax things down, I felt normally hungry and didn't need all the anti-d meds. But I still had attacks, including night ones, and the CRP was still raised when I was taking it, and didn't get well enough to come off disability benefits.

I went from a month of 10mg to 20mg, then back to 10mg, once I tried to come off it (with supervision) and as soon as I was taking it every other day symptoms came rushing back.

So if this one has a similar effect it's still not enough to convince me it's IBS. I am in many ways worse now than when I started the Ami, with the joint pain, limited diet, abdo pains and the CRP creeping up, only just came off it so it became somewhat ineffective.

And since little of the above are IBS symptoms I don't think it worked for a bit because I did have IBS, otherwise my white cell scan would have come back normal. Certainly the IBS spasmonal is doing a bit fat nothing after 2 weeks.

EDIT: I've been giving some thought as to why the Ami worked a bit for awhile, and going by my CRP i'd say I have a very mild case of CD, given that some of the readings I have seen other people with confirmed CD are in the hundreds, and go down to the 30's with treatment, which is roughly where I am now. I'm so ill now probably because it has gone untreated, and the CRP has been creeping up, not by many points but creeping up all the same.

So, if that was the case, while I did have inflamed bowel it was mild enough to be relaxed with drugs a little bit (worth noting here my CRP has not been below 22 for the past 5 years, as long as I have been sick, even while on Ami). But not enough of a treatment to last and other symptoms developed in the meantime, and it became ineffective.

Which is why if this one works a bit again I still need a second opinion/ proof on the new scan (hopefully).

What does everyone else think?
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Greetings to all my fellow undiagnosed folks. I'm a newbie here. It's kinda shocking for me to see how many of us are suffering daily with no relief in sight. I'd like to tell you guys a little more about myself, but it would probably be easier to direct you to my post in the "My Story" forum. I'll warn you...it's a long read, as I've been dealing with this literally my entire life.

Right now I'm waiting for pill cam results that won't be available for another few weeks. I'm keeping my fingers crossed that some sort of diagnosis will come from that. Until then I guess I just gotta keep taking the Lomotil, as directed...even though it doesn't really do anything. :yfrown:


Super Moderator
Star: That's interesting about your CRP. Apparently they tested mine back when I first got sick but it was supposedly in the normal range (although now that I think about it, they didn't tell what it was specifically). I just had it tested again last month when I saw my GP, and he said it was 17 - a tiny bit higher than normal (he said normal would be about 8 or below). So, considering that I've been on Entocort for 7 months now, why has my CRP gone up? Or at least not gone down?

I agree with your theory about how Amitrip wasn't treating the inflammation (I think it's more like an IBS med that it treats cramping and minor pain), so the inflammation & disease got worse even though you weren't feeling that bad for awhile. That makes sense to me (and it makes me really glad that my doctors had the good sense to put me on meds that actually do treat inflammation!). Whatever the case, I really hope you can get this scan and get a diagnosis already. Or at the very least, get some competent new doctors on your case!

I Feel Sick, welcome to the club! I've already read and posted on your "my story" thread, but I'll say it again - it absolutely sucks what you've been through! I sincerely hope you get a diagnosis soon, you've been suffering for far too long. Sorry to hear Lomotil doesn't do anything for you. Are you on any other meds besides that? I take lomotil as needed, but in conjunction with my other meds (Entocort & Amitriptyline) it tends to have the opposite effect and I get horribly constipated from it. So for me it works too well! (It worked great before I was on Ento or Amitrip so I know it's one or both of those that is the culprit.) I hope you get your pill cam results soon, and I really hope you get a firm diagnosis (and some treatment and relief) from it! Keep us posted, we'll be thinking of you.

(For those who haven't read I Feel Sick's intro story in the My Story forum, please head over there - it's long, but it's interesting and heartbreaking. And frustrating too - I can't believe someone could go their entire life being ill like this without a diagnosis!)
Thanks for starting an Undiagnosed thread.

I would almost rather have something really bad, at least I would know what to call it. I have had 2 flare ups in my life at age 16 and 22. I have diarrhea, cramping,hematochezia, bloating. My 1st colo was normal as well as the 2nd one. AT age 22 I thought I had a bad flu w/ leg pain, a high fever, nausea and cramping. When the blood in my stool showed up I had a colo which showing lots of inflammation, ulcerations, but my biopsy and other tests were normal.

My doc has me on a max dose of Asacol and just keeps saying, I just don't understand your colon and you may never know....I feel he has written me off as a whiner, but I just wanna know dang it.

So right now my label is "collitis" a variant of crohn's or ulcerative collitis with IBS. Hopefully some day they'll figure it out.


So my doctors appt (GP) yesterday was almost useless. He didn't want to do anything with the referral for the pill cam since I have a GI at landstuhl. We talked about my history, family history, and current symptoms and he was blown away that they are trying to say its IBS. He explained that if I only have shallow ulcers that heal quickly its going to be very hard to diagnose since they wont see that kind of damage during upper endoscopy/ colonoscopy, and that I just have to keep trying. Which makes sense, but the giant ulcers I get in my mouth have left all kinds of scarring, so you would think if I had ulcers elsewhere they would scar too, but I guess these kind of scars are kind of hard to see.

I'm hoping my GI doesn't just push me away (what a waste of 7 hours driving if so!). I am going to work hard in the next week with this; I'm going to find medical journals and other resources that can help me say "This is not IBS!". I'm also going to be asking if my vitamin levels have ever been checked, and if not if they could. If I am malnourished (which I have the symptoms of) that should show that something is wrong. I just hope waiting a week doesn't hurt my case since my symptoms come and go!

Jamie Lyn: They found inflammation but they are not clarifying which disease is causing it? That blows me away! Biopsies are hard since Crohns and UC can skip parts, so you could get normal results, but they saw the issue! I hope at least you are getting some sort of treatment that is helping your flare.
Jamie Lyn: They found inflammation but they are not clarifying which disease is causing it? That blows me away! Biopsies are hard since Crohns and UC can skip parts, so you could get normal results, but they saw the issue! I hope at least you are getting some sort of treatment that is helping your flare.
They saw ulceration, blood,and scarring w/ my recent colo. The biopsies were more consistent w/ UC, but my GI said it looks allot more like CD. I am on meds, and did high dose steroids. I've had the stupid IBD 7 panel which originall was consistent w/ CD at age 16 when my colo was normal. Now when I had it, it was inconclusive.

Who knows, guess time will tell.


Oh I gotcha. I'm really glad you are getting treated. I guess my view is a little different as well. In my case, as soon as I have a test that shows something I want a diagnosis so that I don't have to wonder anymore. So whenever I see someone have test results that scream somethings wrong, yet the doctor doesn't pinpoint it, I am always surprised.

I hope they determine which one it is soon! I understand your pain, my symptoms started at 15/16 too. I have a fear of doctors and didn't speak up until late 17ish, after my GP had said I most likely had either cancer or crohns. First GI didn't do ANY tests and said IBS and to go away. I dealt with the symptoms alone until late 20, and had to speak up again...again, they think cancer or crohns.

Just think, you got the hard part out of the way! You and your doctor know its an IBD. :)


Super Moderator
Hi Jamie Lyn, welcome to the club. Glad they found something and you at least know it's definitely an IBD, that's closer to a diagnosis than most of us here have gotten! I hope they're able to figure out specifically which one it is so that you can get appropriate treatment soon. Glad to hear that you are on steroids in the meantime, they can work wonders for many of us.
This Club is brilliant :) My name is Laura im 20. been ill for about 3 years on and off started with vomiting pure blood, then nausea, not eating, tumym aches, anemia, dizzyness constant mix of constipation and D.

Ive been told its in my head and i need to 'man up' by my friends but i know its not true and id like them to be in my shoes for jsut one week to see how they like it!

I have a friend with Crohns and im certainly not as severe as her, but im still unwell.

sick of taking tablets and feeling tired :(

Ive had colonscopy, Endoscopy, pill cam and barium meal and scans etc showed thickening in my intestine..not much else...although they did some of the tests when i was feeling ok :/

those tests dont explain why im ill though :(

its nice to talk on here with people who have had similar experiences


Welcome to the club Laura! (well...not saying I'm happy for your situation of course!) I (and others here) completely understand what you are going through. I'm 21, almost 22, and have been sick for about 6 years, so I understand!

I HATE it when people say to man up...so frustrating! Most of the time its doctors telling me this...

Have you ever gotten your blood tested for vitamin levels or anemia? Both of those can cause fatigue.

I hope you are able to find answers soon!


Alright, so I did some major searching the other night at a website that lets you search full US medical journals, and I found a really good one stating all the reasons why an undiagnosed crohn's patient should get a pill cam. Here is a snippet:

suspicion of Crohn’s disease was left to the expertise of
the treating physician, and the diagnostic protocol was
triggered when a patient had abdominal pain or diarrhea.
The diagnostic yield of CE is low when performed in
patients with abdominal pain alone, or in patients with
abdominal pain and diarrhea[21,22]. When other criteria
are present, this yield increases. These criteria are inflammatory
serum markers (ESR, C reactive protein,
thrombocytosis or leukocytosis). In an interesting paper
by Fireman, which enrolled patients with abdominal
pain, diarrhea, anemia and weight loss with an average
symptom duration of 6.3 years, and all of them having
presented with normal colonoscopies, upper endoscopies
and small bowel follow-through, Crohn’s disease
was found by CE in 12 of the 17 patients[23,24]."

I am printing this baby out and taking it with me to my GI next week. I tried looking for medical journals that stated the difference in symptoms between IBS and IBD...but all I found were IBS journals. They actually kind of brought me down, because they say mucus in the stool is a symptom of IBS...which makes no sense, if IBS is a brain to gut issue why would there be mucus involved?

Anywho, thought I would share. :) If anyone else would like a copy of the journal feel free to PM me. This gives me hope that I can figure this out sooner than later!


Super Moderator
Allie, I've heard that about mucus and IBS as well, and it also doesn't make sense to me. Sometimes when things get bad I poo out only mucus, and a lot of it, it just looks like somebody with bad sinuses blew their nose into my toilet. That's got to be more than IBS, I would think.

Update on me: I don't know if you guys saw my other thread entitled "new stomach pain - help!" but the title pretty much sums it up! For the past few days I've had a nagging dull warm ache in my upper stomach, which is new for me since my pain is usually in the lower-right. This pain is in the upper middle, above my navel. Yesterday afternoon the pain got worse, it went from about a 2/10 to a 6/10. This morning it's at about a 4 right now. I'm having really pale light-colored d (I was having normal brown formed stools yesterday up until the pain got worse, then it got lighter and looser with each bowel movement). I just switched reflux meds, but I've been on Omeprazole before so I don't know if it's the meds or if that's just a coincidence. In my other thread, I asked if it could be an ulcer but I was told that black tarry stools happen with ulcers, so that's probably not it. Others suggested that it may be h pylori (I googled that and that also says black tarry stools) or gall bladder issues (so far that sounds the most likely based on my googling). I'm heading to see a GP (not my usual GP, he's off all week) this afternoon, so hopefully they can figure this out.

New pain always scares me. Have any of you guys ever had upper middle pain like this? It started out dull and warm for a couple days and became sharper, and the pain is kind of constant but I get like waves of worse pain. I have no appetite and haven't eaten since lunch yesterday, I'm having explosive watery pale d, I've had some chills here and there, and the pain prevented me from sleeping much of the night last night. Oh, and when this started I had nausea too, although that seems to have passed now. Do these symptoms sound familiar to anybody else?


yeah, I've had that happen too...feel like you REALLY have to go and then just pas lots of mucus. :(

I just finished reading your new thread.. I am so sorry about you new pain! The pain I've been in for the past year is upper left, which is close, but I can't be of much help. :( I really hope your GP is able to give you some relief!


Super Moderator
Thanks Allie. I'm glad I was able to get an appointment today. Now I just have to hope this doctor can figure me out. I have occasional lower-left pain and frequent lower-right pain, but I've never had upper pain before. I was diagnosed about 6 months ago with "focal nodular hyperplasia" which I was told is benign tumors on my liver - I've got 4 of them. But I was also told that they shouldn't cause pain or require attention. Since my pain is in the area where the stomach, gall bladder, and liver are all generally situated, it could easily be any one of those. I hope I can get this one figured out quickly and with a minimum amount of testing.
Having surgery today! I had to do three fleet enemas last night and I was quite sure that dying was a realistic threat at that point. I have to do another one in 2 hours. Dreading that. Just to think that in a week I have to do a full colonoscopy prep for a pill cam is terrifying. I hardly slept all night because the pain was just terrible. I guess if I'm looking for the silver lining I can say that at least I get a few hours of pain free undisturbed sleep this afternoon while in surgery!

Hopeful that this brings some news!
Just reading the posts about passing mucus! That always happens to me. That's how I know I'll have a diarrhea break. I feel like "here we go again" and its just mucus and fleshy looking stuff with a little blood. What is up with that?
They actually kind of brought me down, because they say mucus in the stool is a symptom of IBS...which makes no sense, if IBS is a brain to gut issue why would there be mucus involved?
I have had bouts with mucous before, and I mentioned it to my GI when I was going to him, and he shrugged it off, saying that the colon just excretes mucous as part of its normal processes. But I don't have it now, and I only see mucous when things are worse for me GI-wise. And I have read posts on IBS forums where they say that they have mucous issues also. So maybe it is a symptom of guts that are just in general not happy, whether they are inflamed or simply irritable. But I'm sorry, I don't believe guts that are behaving normally produce enough mucous to be seen with one's eyes.


Super Moderator
Keep Smiling, good luck on your surgery! What type of surgery are you having done? I'm assuming nothing too major if you're having the pill cam in a week? Good luck with the surgery and the pill cam! I hope you get some answers!

May: I've heard that too, that the guts produce mucus to help the feces slide through without sticking to the sides or something like that. But I think too much mucus is definitely abnormal. Up until I got ill with this mystery gut illness, I never poo'ed mucus that was visible to the naked eye. Now I pass mucus frequently, and like you said, usually when my guts aren't too happy. That's got to be some sort of a response to the guts being inflamed or irritated, right? Producing more mucus so that things slide through more easily and don't irritate the intestinal walls any further?
May I become your newest member, please???:tongue:

I just got back from the doctor and all my biopsies were negative :)ybatty:), no diagnosis. I told him that I need something - I am down to 98 lbs and I cannot afford to lose any more weight. I am suffering from consistent diarrhea, cramping, malabsorbtion, food intolerances, etc. He did give me a prescription for Questran and asked to see me in a week. He still calls my condition IBS since he can not find any clinical evidence of anything else so far.

Oh and here is a funny one - the nurse took my weight - which was 100 lbs and she wrote down 150 lbs. When I told him I was 98 - he said huh? It says here 150 - gee doesn't anyone have any common sense - if he took the time to look at me, he should have known I am definitely not 150 lbs......

Have any of you tried Questran - and if so - any relief??


Super Moderator
Sure Catarific, from one cat person to another, welcome to the club! :)

I haven't tried Questran, but I hope it works for you. I've had a lot of similar symptoms including weight loss. I hope you're able to get some relief from the Questran and hopefully can regain some weight. Do you do any of those nutritional drinks like Boost or Ensure? I try to drink one of those every day and that seems to help somewhat with keeping the weight on. I hope your appointment next week goes well. Keep us posted!
Ensure helped me alot when iw as underweight..luckily im not to bad now..i make up for eating when im feeling better.

I went for a curry last night iwth my family and i had a balti..eurgh! im paying for it now cant sleep cos of stomach ache and going the toilet every 5 minutes. no more curries for me! my diets going to be so boring :( xx


I googled Questran and it seems like an interesting drug. Let us know how it works! It reminds me of what they did when I was in the hospital - I had infusions they said were for the inflammation but when I was discharged the meds I was on turned out to be a REALLY strong antacid.

I have needed to get some ensure forever now. My weight is also like a roller coaster... when I'm not in a flare I gain weight, but when I flare I lose more than I gained, so slowly but surely I am becoming nasty skinny. When my husband came back from Afghanistan he told me when he held me I felt so small. :(

oh, and welcome to the club Catarific ;)
Scratch anything I said about thinking the meds were working a little! :(

Got to send in temperature chart (I don't see anything abnormal) this week so will remind Rheumy I am still awaiting news of the new scan.

Also seeing GP about med refills, getting 3 out of 4 refilled since spasmonal isn't working, and if still get side effects will stop another one too, leaving me with the stomach acid & SSRI. If I can get in with preferred GP will mention second opinion as something I am considering.


I am so sorry Star! :( I was put on SSRI (zoloft) a few months ago by a very ignorant GP (she thinks this is all in my head), and it made my symptoms SO much worse. I hope it is helping some for you!

I am almost out of tramadol (only one 30 pill refill left)...I'm pretty sure my GP/GI aren't going to give me anymore. Scary...the pain is so hard to handle, even on the tramadol! :(
I really wish I could drink Ensure - I did try it and got really sick on it - bad cramps, going to the bathroom too much (not diarrhea per say - but just having to go alot with urgency). At first I thought this could not be happening - but after trying the Ensure for three days - and then stopping it - all these symptoms left. So no Ensure for me - don't know if it is the soy, sugar (high sugar content), or the high fat content that got me.
Thanks allie :kiss: Been on it almost 3 weeks and supposed to notice a difference after 2 according to leaflet although the previous similar meds took 4 weeks to start working so maybe...

I am hoping to get a double appointment as several months worth of stuff to bring GP up to date. I also want to ask about a nutritional drink supplement since I am eating very little now. I won't give up on food but no way am I getting all I need and I know she was concerned with that last time.

(Thank goodness for prescription pre payment cards! £7.40 per item in the UK, I pay £104 over 10 months for a years unlimited use. I will go over the limit needed to make it pay next week and been active not quite 4 months!)

Catarific, is ensure the only product available to you? I think there may be 2 or 3 out there.
I have tried a few - same thing - none of these are soy free. My husband thought it would not be a good idea to get sugar free - because we do want the calories. But I think it probably is either the soy or high fat content in these drinks.
There are fat free supplement drinks. But not really fat or sugar free. Fortijuices are nutritionally complete but fat free. If fat is causing the discomfort then these would be ok. Some taste ok but some not to my taste. I found the forest fruit and blackcurrant most palatable. Have you seen a dietician . They will help you meet your nutritional needs and also avoid trigger substances.
Just checked the nutricia site and it says they are fat free, lactose and gluten free but contain milk protein. They say they are a supplement to diet but my ibd dietician had me on these only for a few weeks until the Pred messed with
my blood glucose.
Star, In the uk you have to meet certain criteria before you can get any of these supplements on prescription as they are tightly controlled. It may be you need a dietetic referral to get supplements.


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Star, I wish we had a prepay prescription thing like you have in the UK. Even with the prescription coverage I have, Entocort is still $75 per month (it's over $1000 per month without coverage, so I guess $75 is much better than that, but still too expensive). My other prescriptions are usually around $10. So if I refill my Omeprazole, Zofran, Lomotil, Amitriptyline, and Entocort all at once, it's way over $100 per month. In a country like this, I just cannot afford to be sick! (That's just the meds, don't even get me started on the bills for doctor visits and tests.)

Well, for me it's day 2 being off of Entocort, and so far so good. I feel like my gastritis (or whatever it is) is finally on the mend, the pain isn't nearly as bad and I can actually eat again without pain or massive amounts of d. I'm still pretty weak though, so I am going to rest up over the weekend and will probably skip going to my in-laws for Easter (that's usually a stressful event in itself, and this year my nieces and nephews - all age 7 or under - will be there, and those kids always manage to pass on some awful cold or virus to me, so I am thinking that avoiding that would be good!).
Blimey cat, if it's not one thing it's another for you , poor thing! Glad you are feeling better off the entocort and it stays like that!
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Thanks Little Miss H! I know, I'm a big old mess health-wise. I was always fairly healthy up until about age 30 (I'm 31 now), that's when everything started going downhill fast. My grandfather has many health issues too and his started when he was 75, so he told me I should try not to live any longer than 75. Well, that advice seems no good now, I'm going to the doctor nearly as often as he is! Hah! ;)
Just checked the nutricia site and it says they are fat free, lactose and gluten free but contain milk protein. They say they are a supplement to diet but my ibd dietician had me on these only for a few weeks until the Pred messed with
my blood glucose.
Star, In the uk you have to meet certain criteria before you can get any of these supplements on prescription as they are tightly controlled. It may be you need a dietetic referral to get supplements.
Well whether or not this will appear I don't know but my GI did say he would have me see a dietician so maybe it won't be a waste of time after all, lol.

Certainly my diet is awful but decided being able to keep food in was more important than what I am actually eating, and now though am eating barely enough to fill a dinner plate a day :( Took me 30 minutes to eat a small cheese scone the other night, just did not want it but knew I should.

When I tell my GP about the dietician referral I will kind of mention I will ask about supplements and see if she offers them or not, that seems the most sensible thing to do.

Cat- lol, I am actually taking the most pills in my family, even above my Grandad who is still quite poorly but out of Hospital now!!


I agree, I wish the US had a prepay thing like that. I am VERY lucky atm though, I get all my prescriptions through the military clinic and they are completely free (all my medical bills are paid for actually..its very nice but I can only see military physicians). In the states I paid about $60 a month in prescriptions though (and I could see anyone I wanted!).
Yes I have lived in the states and know how bad the meds costs can get- they wanted $80 for a bottle of medicine for me when I was 9 so peads stuff basically, and that was well over ten years ago!


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Thanks Star, unfortunately I still feel like I'm at a dead end. Ultrasound results and blood test results indicated that everything's fine so it must be gastritis that's recently been causing my stomach pain. GI told me to continue with the increased Prilosec and that I should stay off the Entocort. If I flare up, I'm to call him immediately and we'll decide then what to do. I follow-up again with GI in 2 months.

I'm depressed though because he mentioned again the tests that I haven't had done - specifically, SBFT and MRI-Enterography. But he said at the end of the appointment that he's going to hold off on scheduling those for now. I keep trying to see the bright side, that being off of Entocort for awhile will increase my chances of a positive result being found whenever I do finally have those two tests. But, honestly, I'm depressed/angry. I was hoping for at least the opportunity to get out of diagnostic limbo, but no more tests for now makes it feel like the little light at the end of the tunnel has grown more dim.

You'd think by now I'd be used to doctors upsetting and depressing me, but it seems no matter what I always come away from appointments feeling like I've taken one step forward and two steps back. After awhile it really gets old. I know you guys understand, I just need to vent a bit. This just pisses me off. I knew the ultrasound wasn't going to find IBD, but I was hoping the SBFT and/or MR-E would happen sooner rather than later. It's like doctors just cannot comprehend that we're suffering here, and the longer we wait the angrier/more depressed we get! I need ANSWERS already! Sometimes I just feel like screaming! (Wish I could but I'm at my desk at work, trying not to cry actually, but can't really cry nor scream at the moment.)


I'm so sorry Cat. :( At least you don't have to have surgery, right? I hate it when doctors say "look at it this way, its nothing serious!", so I'm not going to say that, but on the bright side, at least you know a major organ isn't failing.

All of us here know how you feel, and we are here for you! If there is something I have learned on this forum its that we will all find answers eventually...we cannot be medical mysteries forever.

My GI appointment is in two days..I keep arguing with him in my head because I expect him to probably not approve my test and send me away with stronger amitriptyline. I hate that its 3.5 hours away, because this is my last week of classes and I have a physics final on Thursday! But I know that my health is more important than my grades, and I'm not getting any better (spent the weekend in pain...).
Oh cat , I'm so sorry you are feeling so low. I think until you have been in diagnosis limbo land then it is impossible to understand how it feels. You spend all your time WAITING- for what will happen with symptoms, will the medication work, fir your next gi appointment. And in between times you go over what has been said, what will you say, what will they say.....it goes on and is mentally exhausting.
If your symptoms flare up again will your gi arrange those investigations sooner? I presume he will.
Try and keep strong. Put it all in a box and at the back of your mind. Enjoy every moment you are symptom free and when you are not try and distract yourself with good things. I know it's easier said than done .
And whenever you feel like screaming do it on here...let's practice


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Thanks Allie and Little Miss H. :)

Allie, I spent the weekend in pain too. On Saturday I felt a bit better from my gastritis so my friend and I went downtown for a little bit. But after going to just 1 store, I felt so weak and tired like I might pass out. So we went to a movie so that I could sit for awhile. But on Sunday I felt worse again, like I had overdone things on Saturday, so I stayed home and didn't go to the in-laws for easter so that I could rest. But, of course, there was housework to be done and I couldn't look at the dirty floor or the dirty dishes without doing something about it. So, as I knelt down to get the dishwasher detergent - pop! My knee dislocated. My knees used to do that all the time but hadn't in several years. I forgot how painful that is! I got it back in place within a few seconds, but it was agonizing and it still aches today. So, that was a painful waste of a weekend!

Little Miss H, you got it spot on with how mentally exhausting this is. As for what will be done if/when I flare again, my GI would only say that I should call him and we'd decide from there. I asked if he'd put me on Entocort again and he said he couldn't say now, and we'd have to wait and see what the situation warrants at that time. He also wouldn't say anything further about the tests except that I should have them at some point but not now. I know he thinks he's doing a good thing, since I did kind of get test fatigue from the amount of tests that I had done last year, but in the same vein I really do want a diagnosis and I want it as soon as possible, so personally I'd rather bite the bullet and start the next round of testing.

My GP recently put it to me like this - if I'm an interesting patient, my doctors will be more interested in running tests on me. He said I'm marginally interesting at this point, which is probably why I'm getting pushed to the back burner somewhat. I had hoped this gastritis thing would make me more interesting again, and it did for a few days when it was potentially my gall bladder, but now that it's "just" gastritis I seem to be rather dull again. So I guess for now I have to wait until I become more ill again, and then I'll be more interesting. Sad but it doesn't surprise me that that's how some doctors think.


I'm sorry you had such a bad weekend. :( Mine was very similar. I woke up Saturday in pain, and I took tramadol and decided to rest, but my husband was very restless so we ended up going for a drive and going to a garden/pet store and got some stuff for our dog and parrot, and plants for our window boxes. Sunday I woke up in awful pain and when I tried to get out of bed, I almost passed out on the way to the couch, so I just sat on the couch the whole day. :(

That is interesting that your doc explained it that way. My GI, the last time I saw him, said he wasn't going to do any more tests until my symptoms get worse or change, which goes alone with the interesting theory. I don't understand why we have to be "interesting" to get help; I know diarrhea and pain isn't much from the outside, but none of us want to just sit here like this waiting to be "interesting"!

I don't know if any of you guys know of the show called "House", but I think all of us need that kind of doctor right about now! Someone who will keep trying until they figure it out!


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Allie, we love that show! My hubby says all the time that I need Dr. House to figure me out! I don't know if there are real doctors like that or if they'd be interested in a case like mine but I need that in real life. Although I don't know if I'd want the doctor to verbally abuse me the way that House often does to his patients. ;)
There are some doctors like that, I have known many who are rewarded by seeing a patient get better both physically and emotionally. It is probably true to say though that where a doctor cannot help a patient for one reason or another then their frustration with their inability to help sometimes comes over as frustration with the patient which isn't the case...known as transference..and taught about in medical school to try and avoid that impression being given.
That said there are always bad apples or mediocre apples in every profession and I think some doctors would be better in different professions...fishmongery for example!