Undiagnosed Club Support Group

Hi all I am completely new to this forum, but for the first time in my life I feel like im not alone in my hunt for a diagnosis.
I have been suffering with the same symptoms for over 3 years now and I am still yet to have a diagnosis. It all started when I was 16, I had these horrible burps that tasted like rotten egg, at the time I didnt think anything of it but I now know this as the start of my attacks. Anyways I then had horrific diarrhoea and agonizing pains in the upper left side of my body. I assumed I had food poisoning. When this continued for a week and the pain and symptoms were getting worse I went to see my GP. I was told I had a gallbladder infection and was given antibiotics. This continued for a year but my attacks got worse and worse, to the point I was in an ambulance every other week because I couldnt take the pain. After an emptying study test doctors found that my gallbladder was not functioning and they removed it. I was attack free for 9 months and thought I would never see another eggy burp attack ever again. To my horror I then had my attacks back, they were worse than before and I was given pethidine for the pain. They were happening every week sometimes twice a week, I wasnt eating and was so poorly. I threw up bile constantly and had awful diarrhoea with my attacks. When im not in attack mode i am severely constipated. My gastro doctor has scheduled an MRI on my small bowel for wednesday, but does not think its crohns as my blood work is normal, but I know something is seriously wrong with me. At present I am on a liquid only diet consisting of 3 fortisip drinks a day. I have lost over a stone in less than a month but im not having my attacks , however I am now terrified to eat food. I cant believe that after 3 years I am still suffering and in more pain than ever. Im only 19 and I dont feel like ive lived a teenage life.

Hey, I'm a new one to this (sorry to add to the newbie pile), so I'll give my story so far.

I'm 21 and got diagnosed with IBS when I was 17 after chronic stomach pain.
Around a year ago this stomach pain and waves of fever, diarrhoea - "normal" IBS stuff, turned into chronic d which is now verging on no control with blood, feeling weak and getting colds/bugs easily, insomnia, weight loss and fevers. It seems to not care to what I'm eating.
After 2 months of being ill and barely strong enough to go to university, I went to my doctors to see what they can suggest - I was sent for blood tests for Coeliacs and Crohns and a stool test which they've processed but haven't given me the results, the doctor has asked me to have another blood test in a months time.

So yeah, I dunno, I've just got to that middle point where I don't have the effort in me to care but I care so much because I feel like something is truly wrong. I have to pull through so that I can keep up with university work so no-one believes that I'm feeling ill and just.. uuuuurgh, life just gets that bit harder when you can't hold in a BM for 15 seconds. I don't want to eat, I don't want to leave my house and making myself do thee two things is becoming a daily struggle as I know it just makes everything worse.

So yeah, I'm just hoping this all comes to something manageable and so I can get myself back to some state of normal.

Rogues:does immodium help with the D?

GI felt all Liam’s symptoms other than the reflux (stomach pain, weight loss, headaches, dizziness, confusion, and poor short term memory) can be explained by nutrient malabsorption. He felt the reflux may simply be a result of us trying to push to many nutrients into his stomach (over feeding).

The GI didn’t feel that Liam’s symptoms & blood work was consistent with Crohn's but wasn’t really sure what it was consistent with. Yesterday he did blood & stool tests for Celiac’s disease (have been done before), liver function and bacterial infections.

He said if no clear answer in the test results, which we will get back tomorrow then we need to do, Upper Endoscopy, followed by Pill Cam and MRI and keep running tests until we find an answer because there is clearly something significantly wrong. Liam’s BMI is now 13.9, as he’s having a major growth spurt this year despite not gaining weight. So it’s now pretty obvious just by looking at him that something is wrong. Although I’m not happy that he’s got to this point weight wise, it’s a blessing in disguise as at least now doctors can no longer take a wait and see approach.

I'm in the exact same position, I'm 26 and been through so much, but now another problem has come about and the doctors have mentioned Crohn's but no diagnosis yet.... I'm about to give up I don't know what to do any more

Lilbird86 have you posted more details on your story somewhere else? If not do you want to tell us about? There are a lot of people here going through the same struggle with finding answers who can perhaps offer some good advice on things to try next.

Hey all,

Just wanted to thank you all for sharing your stories. I´m not sure I´d be able to cope with what some of you folks are going through. It certainly helps put my relatively mild and recent symptoms into perspective!

I am a 35 year old Brit currently living in China, being here definitely has its benefits as well as its drawbacks. Having read some of the NHS horror stories of weeks and months of waiting I feel like I´ve been seen and sent for tests promptly here, and the doctors are taking my symptoms seriously. On the other hand I don´t speak Chinese so all of my communication is done through Chinese friends (for whose help I am eternally grateful!) and I really don´t feel like I have a good handle of what the doctors are doing, or what they expect from the tests. Expecially as I have only had 3-5 minutes with the 3 different doctors I´ve seen so far (a different doctor every time I go).

My symptoms started about 2 months ago, While on holiday I developed D that just wouldn´t go away. When it became bloody I went to the doctor. I showed him a pic of the evidence, he said 'that´s serious' and he arranged for a colonoscopy the next week. The colonoscopy revealed ulcers in several different places in my colon and rectum, but couldn´t get into my small intestine. The biopsy they took was inconclusive.

The doctors prescribed 5-ASA (Mesalazine?), Compund Glutamin Entersoluble capsules and Eosophinil-Lactobacillus tablets and immediately after the colonoscopy the D cleared up. I´m not sure if this was because the colonoscopy preparation 'cleaned me out' (maybe clearing up any infection that might have been the cause of my symptoms) or reset my digestion somehow... or maybe it was the drugs working. In the 3 weeks since then I have had general abdominal pain and tenderness with irregular, large and sometimes watery BMs (I read somewhere that this could be a symptom of ulcers in the small intestine too) containing much less blood and mucus.

On seeing the results of my colonoscopy the doctor ruled out UC as the ulceration 'jumped'/was not continuous. She sent me for a CT scan of my small intestine last Friday and I am waiting for the results, which are due on May 8th. I am not sure what she expects that to reveal, but I asked her what the list of possible remaining causes could be and I think she has narrowed it down to an infection of some kind or Crohn´s disease.

I forgot to say that I also went for a stool test (only after really pushing for it after advice from my Aunt who´s a nurse), which came back negative for parasites, but I´m not sure if they tested for bacterial infection (everything´s in Chinese!). Also, this was done 2-3 weeks after the D cleared up, so I´m not sure if it would have picked anything up anyway.

At no point have I been given a blood test. When I asked to be given one the doctor said they would only do one after I had been on treatment for a month to check that the drugs weren´t reaching toxic levels. She doesn´t seem to want to use a blood test to help with diagnosis.

Finally all the drugs I was prescribed ran out over a week ago (after a 2 week course) and I still have the (mild) abdominal pain. Should I be asking for more of the 5-ASA?

I guess I´m just feeling a little bit lost in the Chinese system, and though I´m getting prompt tests I´m not getting any detailed information or feedback about what´s going on from the doctors I´m seeing. I´m hoping May 8th will bring a diagnosis. If so, I think I will take my results to a private, English speaking doctor to discuss the prognosis and treatment plan. I haven´t done that so far as the tests would be several times more expensive and I don´t have health insurance at my new job yet.

Any input gratefully received. Here´s hoping we all get diagnoses as soon as possible!

Sparkle2012 said:

Rogues:does immodium help with the D?

Click to expand...

No, last time I took it I was at a music festival a few years ago and I didn't have a BM for around a week after which was really painful in a different way. I'd rather have predictable symptoms so I haven't used it since.

Welcome to all the recent new members of the club! I'll try to briefly respond to everyone, apologies if I miss anyone.

YorkshireBen: I've been on several formulations of 5-ASA (Mesalamine/Mesalazine - for some reason it's spelled differently in different parts of the world!). It's a very mild type of medication and doesn't work for everyone. Also, different mesalamine drugs work on different areas of the digestive tract. Pentasa works on the small intestine, Asacol/Delzicol works on the terminal ileum & colon, Lialda works on the colon & rectum, etc. Do you know which one you were on? It's possible a different one would benefit you more - or it's also possible that your illness is too severe for a 5-ASA drug to have much impact. You may need something stronger.

JessicaGrace, I don't believe I've heard anyone else in the club mention eggy burps, that's a new one. If you do have IBD, that's definitely not a common symptom. Have you been checked for things like bacteria, parasites, etc? Have they looked at other possibilities such as Lupus or Behcet's?

Rogues, that sounds to me like something more than "just IBS" is going on. Good luck with the blood & stool tests - keep in mind that the Celiac blood test is notoriously unreliable (honestly I've heard that you may as well flip a coin), so if Celiac is suspected, you will likely need an upper endoscopy with biopsies, as that test is the gold standard and is much more accurate. You could also try going gluten-free for a few weeks and see if it has any impact.

Lilbird86, welcome. What symptoms do you have?

Tatahead, sadly what you said is correct - if doctors can't find a physical cause for our symptoms then they are often so quick to pin the blame on us being crazy! It's not fair and it's not right. It's really awful.

Hi Nathan, welcome back! I always enjoy seeing you around the forum, although I wish you were doing better. Good luck with the new GI - please keep us posted on how that goes!

How's everyone else doing? I'm okay, I'm slowly but surely adjusting to the new medication (Delzicol) and feeling better every day. Still exericising a lot, although I need to take it easy today because I overdid it the past couple of days. It's finally springtime here and I was able to take my bicycle out for a ride outside, that was lovely. I even rode through an area where I know there aren't a lot of bathrooms, but I was okay and didn't need to make a "pit stop".

Liam's new GI said something similiar about Celiac's, that unless the results are extemely high that it needs an upper endoscopy to confirm. He also said that it's important that Liam eats two serves a day of bread or cereal (with gluten) each day until the upper endoscopy is done as if there isn't enough gluten in his diet leading up to the endoscopy there may not be clear signs of Celiac even if he does have.

Hi to all the new people I'm so glad you have found this forum as it has helped me through some bad times. Thanks Gculk- that helps. I have a bad weekend/week! My family are frustrated with me, well more the illness, they want me to go back to ER and I know this wont do anything but small pain relief they will keep me and send me home with paracetamol! I've done it six times and I don't think I can do it again. I seem to be really shaky today I always am on and off but today more so. Does anyone else have this? I have been drinking coffee or alcohol and I am eatting a bit but obviously not a huge amount. I went to meet my brother and his girlfriend and it near killed me. Walking back to the car I vomited and thought I was going to pass out. What a life!? I have my pain doctor on Wednesday (my GP has spoke to him and suggested CBT) if he suggests this I'm going to say "will CBT help with the blood in the toilet?" Has anyone got any advice that would help me get actual pain relief off him!!!??? I'm not a junkie and I know I don't need to tell anyone that here but I'm paranoid now. I just want some relief for once. Is that so much to ask!?

Gabi, this is going to sound gross, but maybe take a picture of the blood in the toilet and show that to any doctor who suggests CBT. It's one thing to tell a doctor that you're passing blood, but it seems to get more of a reaction if you show them evidence of it. I don't know if it's because it's harder to ignore, or if they're just imagining a little trickle of blood when you say it, but showing them seems to get better results. (Please note I haven't done this myself, but I've heard others on the forum say that it usually gets them taken seriously!)

Being shaky could be a number of things - it could be something like a vitamin deficiency or maybe it's from generally not getting (or absorbing) enough calories/nutrients. Blood work might help get that sorted out, so if you do go to the ER/doctor, don't let them send you out the door without getting some blood tests done. I would ask for CBC (complete blood count), ESR and CRP (inflammation markers), and to check all your vitamin levels.

I don't know what to tell you about pain meds, hopefully somebody else can chime in with better advice than I can give. I will say that in the 3.5 years that I've had this IBD or whatever it is, I've never been offered pain meds by any doctor. But when I was involved in a very minor car accident last year and I had a mild case of whiplash, they practically threw the pain meds at me! The urgent care doc gave me several different prescription pain meds, and I didn't even ask for them. I only went to urgent care to see if it was whiplash or something more serious (my aunt had just broken her neck in a bad car wreck a few months prior so I was paranoid about neck injuries!). It's so odd that for chronic pain they treat you like a junkie, but if you have a mild temporary pain they are more than happy to prescribe anything. That just seems wrong to me!

Cat-a-Tonic, thanks. It helps a lot to have someone else say it rather than me just brushing it off because everyone thinks I'm overreacting.

It's a weird one because I don't eat much gluten normally, but if I do eat it, it blocks me up for a short while then I go back to chronic d after a day or so which doesn't really sound like Celiac. Ah, the body and its wonders.

Exercising is a natural remedy I should probably use more often, glad that it works for you!

Rogues, I will say specifically - I looked back at your previous post, and you mentioned passing blood, weight loss, and fevers. Those are all red flag symptoms that something more than IBS is going on, so based on that definitely don't let them brush you off. Check out this link for more on IBS vs IBD (scroll to the bottom for the red flag symptoms):
http://www.helpforibs.com/footer/rome_guidelines.asp

Yes, exercise has been great for me - however, my presumed IBD is in remission right now so I feel relatively "normal" these days (well, my new normal anyway!). I don't know if I'd be able to exercise if I weren't in remission - I doubt I'd be able to exercise every day like I have been lately. If you do try exercise, I would suggest starting slowly with something like short walks or gentle yoga. Take it easy and don't push it - if something hurts or causes issues, then stop and try something else. And personally, I find I like to exercise in a gym or at home, because there are always bathrooms nearby if I need one. I always get nervous when I ride my bike around town or when I take my kayak out on the water, because I know there might not be a bathroom nearby if I find myself needing one!

Thank you very much for your reply Cat, really informative! The Mesalamine/Mesalazine I was taking is a Chinese brand so I´m not sure. They found ulcers in my colon and rectum, but weren´t able to see my terminal ileum or small intestine on the colonoscopy. My doctor also told me the meds I am on would only act on my colon, so I´m guessing it´s most likely to be similar to Asacol/Delzicol or Lialda.

Gabi - I´m really sorry to hear what you´re going through. :ghug: I´d just like to second what Cat said about taking a picture to prove the severity of the bleeding to your doctors. I took a picture to my first appointment and had a colonoscopy within a week and all the doctors seem to be taking me seriously (or maybe that´s just down to the way things are done here)

That's a fab idea. I take pictures of my rashes and mouth ulcers to show my doctors as they think I'm nuts but a toilet full of blood now that's a shocker. However being female they will prob blame it on my period-my GI has an answer for everything and its hat to always be one step ahead of him and when I am it gets his back up even more. What an ego he has! I know there are some messed up people out there (not judging them) who do fake illnesses for attention or whatever but I'm not craving attention and I wish I was faking it then I would never be in pain. Trying a liquid diet to reduce pain but I'm finding cravings for food really hard! I love my food so much- that's why I was so shocked when I went off it and lost so much weight!! I also love the social aspect of it- which is completely gone now- I can go out to restaurants but imagine saying to ur waiter can I have that via TPN please! Lol! If I don't laugh I will cry! Has anyone been put on amatriptaline an or lyrica for pain? I believe my doctors are just putting me on high doses of these to shut me up and help my "mental" problems!! They make me feel awful I fall down the stairs and can't drive all I want to do is sleep and eat (which doesn't help!) you would imagine that if they are throwing these drugs at me they wouldn't be bothered by giving me something that would actually help like steriods or something!?

Gabi, it can't hurt to ask for steroids. I put my foot down at one point and demanded to try pred. It worked so well for me that my GI put me on Entocort for 7 months and that got me into remission. They would probably be okay with you trying out a trial run of pred, it can't hurt to ask anyway.

I am on Amitriptyline, 25 mg every night. I was put on it to prevent headaches (Entocort gave me chronic headaches) & migraines. My GI felt it might help "calm" my guts too, but I didn't notice any difference there at all. The only things it does for me is to help me sleep at night, and it does do a good job of preventing the headaches. But it does nothing for my guts/pain or anything else.

YorkshireBen, did they take biopsies of the ulcers during your colonoscopy? And why weren't they able to see the terminal ileum - was there narrowing or inflammation that prevented the scope from going that far? Are there not any English-speaking doctors there? I know the language barrier can sometimes be so detrimental - another member of the club, Allieinwonder, is an American living in Germany, and it took her multiple doctors and years to get a proper diagnosis. She speaks some German I think but it still took forever.

Cat - yes they took a biopsy, but apparently it didn't show anything. I'll ask my friend to take another look at the results to see what was said specifically.

They said the reason that they couldn't see anything in the terminal ileum was that there was feces there. This surprised me as I followed the prep guidelines religiously. The laxative they gave me was Epsom salts, maybe that had something to do with it. I get my small intestine CT results next week, so hopefully that will tell us more and give them what they need to make a conclusive diagnosis.

There are English speaking doctors here, but they tend not to be specialised in GI and they are many times more expensive as are the drugs and procedures in their clinics. As an example all the tests (stool, colonoscopy, CT), consultations with specialists (3 so far) and drugs (2 weeks supply of 5-ASA plus a couple of other drugs) have only cost the equivalent of £200 (~$300). In the English speaking clinics it would have been at least 3 times that and I currently do not have health insurance as I just started at a new company.

One question I'd like to ask is: Has anyone heard of my symptoms (6 weeks of D, 2 weeks of significant bleed, ongoing minor bleed, significant and multiple site colon and rectal ulceration, ongoing fatigue and mild abdominal pain) being caused by a "simple" infection?

Reading some of your stories of chronic pain and other symptoms mine seem very mild and short term (this has all happened in the last 2 months and the D and most of the bleed stopped as soon as I had my colonoscopy and started on 5-ASA)

I've taken Lyrica before NOT for IBD/IBS. For me it was the wonder drug that got my pain down to bareable limits. Lyrica works by reducing the transmission of nerve signals and it does have shocking side effects, slow reaction times that make it dangerous to drive is a fairly standard Lyrica side effect, lack of coordination and falling over and walking into things is also a common side effect.

I'd ask the pain specialist why they are prescribing you this drug, what exactly they are trying to treat with it. Because stomach pain isn't among the types of pain it's recommended for.

Gabi - not too get too biological (although I guess that's par for the course here ) - isn't the blood in the toilet when you have your period totally different from when it comes in your stool?

If so, maybe you could take a picture of both for comparison as a comeback to your unhelpful GI.

Also, I'm sure you've already considered it and I know you're concerned about being seen as a "junkie" who is shopping around for drugs, but can you switch to a new GI?

Gabi - Have your doctors ever suggested your pain might be Fibromyalgia? Just wondering as bowel abnormalitis are mentioned as a symptom of Fibromyalgia and it is a condition that Lyrica is used to treat (apparently its the only FDA approved pain killer specifically for fibromyalgia). Still trying to figure out why they've prescribed you this drug.

Sorry, forgot to say that another reason I think my symptoms may "just" be down to an infection is that the D first started when I was away on holiday in Vietnam.

That said, I know that Crohn's might be triggered by an initial infection.

Wow! Lots of posts!

Sorry haven't been online much lately. . Just struggling a bit. My D is coming back with pain.. and changed colour. I spoke to the rheumy nurse and she thinks I need to lower the sulfasalazine dosage as it could be upsetting my stomach.. haha!

I have also decided I want to go ahead with the chiari decompression surgery. Just a bit scared to actually say YES to me neurosurgeon fo put me on the list lol

@yorkshireben - obviously guessing by your name that you're from yorkshire.. whereabouts are you from? are you permanently living in china now?

Gabi said:

That's a fab idea. I take pictures of my rashes and mouth ulcers to show my doctors as they think I'm nuts but a toilet full of blood now that's a shocker. However being female they will prob blame it on my period-my GI has an answer for everything and its hat to always be one step ahead of him and when I am it gets his back up even more. What an ego he has! I know there are some messed up people out there (not judging them) who do fake illnesses for attention or whatever but I'm not craving attention and I wish I was faking it then I would never be in pain. Trying a liquid diet to reduce pain but I'm finding cravings for food really hard! I love my food so much- that's why I was so shocked when I went off it and lost so much weight!! I also love the social aspect of it- which is completely gone now- I can go out to restaurants but imagine saying to ur waiter can I have that via TPN please! Lol! If I don't laugh I will cry! Has anyone been put on amatriptaline an or lyrica for pain? I believe my doctors are just putting me on high doses of these to shut me up and help my "mental" problems!! They make me feel awful I fall down the stairs and can't drive all I want to do is sleep and eat (which doesn't help!) you would imagine that if they are throwing these drugs at me they wouldn't be bothered by giving me something that would actually help like steriods or something!?

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Gabi my GI has turned out to be like yours so I really do feel your frustration. And the more GI's you see the crazier you look!!

Steroids have worked beautifully for me but the GI says it's all my head despite my blood results and FCPs backing up how I feel. I don't get what these GI's stand to gain by being so awkward.

I have tried amitriptyline for pain before and didn't find it helpful, just hated the side effects. My rheumatologist wants to try me on imipramine (very closely related) but I'm going to refuse.

At least a short trial of steroids would rule something inflammatory in or out, but then what use is that if your GI will have an answer for you even if it works. Mine said it's just the feeling of euphoria that steroids give you causing you to feel better. What a joke.

I'm off for my MR enteroclysis this morning dreading it

Lsgs - Good luck with your MR enteroclysis today I'll keep my fingers crossed for you that it goes well and gives some concrete results that your GI can't argue with!

Bozzy - good guess!! I'm from Whitby and have been living in China for about 18 months now, not quite sure how long I'll be here. Haven't lived in Yorkshire for 10 years or so, really starting to miss it

@gabi - i agree with everyone about asking for a steroid trial. if it is an inflammatory problem.. it should work great for you! steroids actually proved i had an inflammatory joint problem too, when my original doctors didnt think i did.

@yorkshireben - honestly im such a psychic! so you are very north yorkshire! I was actually born in Beverley and lived in hull for a large chunk of my early years. now im in Sheffield with my husband and daughter. I have only once lived outside of yorkshire (warrington) and never again haha!

@cat - it is so annoying about the whole chronic pain vs. injury pain and the meds given. i take paracetemol very occasionally for my headaches (once a week maybe?) and the neurologist thought i had headaches caused by analgesia. honestly - its ridiculous.

@bozzy - hehe! My last stop in Yorksire was Pocklington, used to pop through to Beverley every now and again I´m thinking that when I move back I´ll never want to leave.

I hear Sheffield has a good IBD clinic, I also saw that Bradford has one. Do you know of any others in Yorkshire and the North East? Maybe York or Middlesbrough? There are plenty of good things about Whitby, but central location is not one of them!

Alright quick pain question, I too have pain. Mine feels like either a kidney stone or shingles-like nerve, and of course joint pain and abdominal pain. What are others experiencing?

My tummy is still wonky after the contrast yesterday. I can feel a restroom trip soon, and likely extras today. But, I did get some work done in my yard, three trashcans full of weeds and plants that have seen better days. I even found my Asiatic lilies. : )

I am still having lower right quad pain. The gyne that removed my intestinal adhesion in 2011 said to me a few weeks ago that it was likely muskelo/skeletal. I think if it were, it would be a hundred times worse after what I did in the yard last night. Nope. I felt that work, but in different places. This is NOT muskelo/skeletal. By the way, I am sure I am spelling that wrong, but I don't care. ; )

Gabi, good luck!

Ben, it sure sounds like you have CD to me.

I really am beginning to vehemently dislike doctors! Especially the ones that you get a good feeling about and like from the start. They hurt you the most. At least if they're a jerk, you aren't surprised.

@ben - i know we have a good gastro investigations unit at the hallamshire hospital (and I have had 3 admissions) my GP booked me in rather than A&E.. I dont know if that is thw IBD clinic that you mean?

Otherwise I dont really know of any clinics im afraid. As cat-a-tonic and others will know.. I havent really gone for 2nd opinions because my bowels are manageable and biopsies were normal even though they cauterised bleeding and found inflammation lol. So im just leaving it for now.

Are you moving back at any point? My brother lives in york.. and have family in keighley too.

@lsgs - good luck today.. I dont know what an MR enteroclysis is?? But good luck mrs xx

Well I completely and utterly failed my enteroclysis.

Couldn't get the NJ tube down. It got into my stomach and I was still gagging (apparently that's the point most people stop gagging as it's no longer irritating your oesophagus) and I retched so hard I have given myself a very painful back injury?! I mean I felt like I couldn't breathe, it was awful and my sinuses killed for about an hour after.

The worst part was, when feeling like crap already from not being able to do it, the head radiographer comes in and gives me a 10 minute lecture trying to get me to go again. The nurse said my gag reflex was so strong it was never going to work and she was standing shaking her head at the radiographer. Probably because I nearly cut the blood circulation off to her hand squeezing it.

Best part - normally when they can't get the tube down (which happens a lot apparently) they just take you down to MRI and you drink the stuff. But beforehand the nurse and the doctor had a scrap about whether I was to get xylocaine spray in my throat and nose, and eventually they did give it. This means that I couldn't drink the stuff as my swallowing reflex was gone and they have to reschedule.

SO I'm waiting another 4 months. FFS.

I'm off to feel very sorry for myself and my back. Lol.

Aww no.. so sorry that it didnt work out and you have to wait again
Xx

Isgs sounds miserable, sorry to hear it went so badly and about the huge wait to have test done again.

I'm still waiting to hear on results of Liam's last set of tests, they said probably today, but as it's 7:20 pm now, I'm thinking it will be tomorrow.

Bozzy, do you know when the surgery will be? Best of luck with it!! Keep us posted, I hope it is a great success and makes you feel a lot better.

lsgs, I'm so sorry to hear it didn't go well. I hope your back is okay! I had a terrible time when I had to have an NG tube put in, but not as bad as your experience. Why a 4 month wait, do they just re-add you to the end of the queue? Is there no way to try again sooner?

Meg, when do you get your CT results? I agree that can't be musculo-skeletal (I think that's how you spell it) if you were able to do so much gardening without ill effects. Are you still able to go to the gym, or are you still staying away from exercise for now?

Ben, yes, there's still some question as to what causes IBD/Crohn's, but the general consensus among researchers seems to be that it's likely a combination of factors - environment, genetics, and some sort of initial trigger (like food poisoning, virus, bacterial infection, etc). That seems to be what happened with me too. I ate something iffy one day and got very ill and never have been the same since!

Speaking of iffy food, I have to go to a party with co-workers tonight at a bar. I usually never go to bars as I rarely drink (like one small glass of white wine every 3 months or so is my limit) and I cannot eat bar food as it's mostly fried or just not tummy-friendly. But it's a goodbye/retirement party for a co-worker who I have known for years, so I really want to go say goodbye to her. I'm packing safe snacks in my purse though because I know there won't be anything there I can have. Hopefully I won't get kicked out of the bar if they see me drinking an Ensure...

Thanks cat - I havent conacted my neurosurgeon yet. But his secretary said it would be a 6-8wk wait. I go on holiday in a couple of weeks, so will probably contact my NS after then..

Have fun tonight, and hopefully there is a safe option on the menu for you to have xx

Thanks Bozzy, I'm not optimistic about the bar having food I can eat but we'll see. I did find out that another co-worker with IBD (he has UC) is coming to the party too, but he can eat pretty much anything (I saw him eating nuts the other day!!) so I'm still kind of the odd one out. Oh well, I'm used to that by now!

That sounds like a good plan, have your holiday first and then book the surgery. 6-8 weeks isn't too bad of a wait for the NHS, correct?

Yeah that is a very good wait time.. the secretary said that cranio/cervical surgery has a fairly high priority. Anything for suspected cancer has a 2week priority to be seen. Even my husband who had a mole removed was seen and mole removed within 2wks (his sister had melanoma). Obviously my wait time will increase for emergencies and higher priority cases. Which is understandable.

It is crazy how much IBD varies in people. Is he in remission?
I only struggle with trigger foods when my stomach is in a bad mood. Like soy sauce - goes straight through me in a few minutes when my tummy is unhappy. But when I go through periods of normality.. I can have soy sauce just fine.

Do your new meds seem to be working yet?

Maree any word on Liams results?

Bozzy is that you definitely going for it then? What sort of improvements can you expect after the surgery?

Cat they'll just add me on to the end of the waiting list for this scan again, and small bowel imaging has a horrendous waiting list. I also love the image of you drinking Ensure in a bar, classic IBD-er!

I just got a call from my GI as he had heard about my failure for the scan lol. He has chatted with my other doctors and they now feel there may be a problem with the blood supply to my gut OR a serositis that isn't showing up on scans. It would explain why the steroids have worked. They also think my sjogren's is not just sjogren's but with a touch of lupus or some other connective tissue disease. He said it doesn't explain the calprotectin and he doesn't know what that is or why it's high. If my MR enterography and MR angiogram come back normal, they are going to try treating me by immunosuppression either via azathioprine or rituximab infusions.

I swear my GI has a split personality, it was like speaking to a different doctor again today.

GI rang and said all normal and asked for approval to book Upper Endoscopy.
Plan he outlined going forward is Upper Endoscopy, MRI, Pill Cam.
If none of these show anything he says will try a broad spectrum antibiotic (that specifically targets gut) to try to knock out any paresites or bacteria that are present but not showing in stool samples.

Isgs sounds like progress. Which is nice to hear.

Yorkshire Ben: some important tests in identifying Crohns are Prometheus blood test; pillcam for higher in the bowel; fecal calproctin, CT scan. Keep an eye on the gallbladder..you can get a HIDA scan to determine it's function. It really sounds like Crohns but I'm wondering why you are only now showing symptoms and they are that harsh....maybe change of diet. Have you ever had stomach pain or bouts of D before this came about? I would ask your doctors about the above tests at some point, run them by your aunt for her opinion as I'm no expert - only a patient. For future ref, a lot of people are having good luck with diets if it turns out it's Crohns: check out the SCD and paleo diets. And hey -- this is a great time to learn Chinese!!! Good luck to you.

Bozzy, yes, I think my co-worker with UC is in remission - he's only said that it was bad when he was a kid but it doesn't bother him now (he's in his 50s I think). He only takes Lialda as far as I know. He doesn't talk about it much but he seems okay - I never see him running to the bathroom or looking pale or anything.

That's weird that soy sauce is a trigger for you! It's one of the safest things for me. I have issues with low sodium, it always drops too low when I have bad diarrhea, and when my sodium drops I get really dizzy and feel awful. I read somewhere that soy sauce is one of the highest-sodium things you can eat, so if you have low sodium, a teaspoon or two of soy sauce is all you need to get things back to normal. It works for me! When I have dizzy spells, I just have a bit of soy sauce (gross I know) and it works almost immediately. In really bad flares, one of my go-to foods is rice with a lot of soy sauce, that's always easy on me and makes me feel better.

Yes, I think the new med (Delzicol) is working. My stools have pretty much gone back to normal and I feel pretty good. I had a bad breakout of acne in response to switching meds multiple times, but that seems to be clearing up now too. The only issue I'm having lately is that my arthritis is really bad today! It's usually active when it rains/snows or if it's really cold. It's sunny and warm today so the arthritis should be quiet, but it's not. That's frustrating. Only 2 months and 10 days until my rheumatology appointment...

lsgs, I didn't drink my Ensure in the bar after all. I saw that they served lemonade and it was a warm evening and a nice cold lemonade sounded good, and it's usually easy on the tummy so I went with that. Everyone at the party was concerned (they all know I have tummy issues) and they were like, can we buy you something? Can you have soda? It's nice to have supportive friends/co-workers. One co-worker has UC as I mentioned, another co-worker's wife has a bunch of auto-immune illnesses, and a former co-worker who was at the party has Celiac disease, so I fit in pretty well with that group. They're all really accommodating and kind.

Thanks for the comments everyone!

Sparkle - great testing information, thank you! The only one I´ve had from your list (in addition to my recent colonoscopy) is the CT scan of the small intestine. Results for that are due next week. I´ll be sure to discuss the remaining tests with the doctor when I go.

As for the sudden onset of the symptoms, I´ve never had them before and I think this first flare-up may have been triggered by an upset stomach I picked up while on holiday in Vietnam a couple of months ago. The fact this is my first flare-up is the main reason I´m wondering whether this could just be a one time infection.

Funny you should mention Chinese, learning the language was the main reason I chose to come live here. Unfortunately I´m nowhere near good enough to discuss medical matters yet, hopefully one day soon

Bozzy - I guess the unit you mention is the one I´d read about. I´m thinking of moving back some time next year to train as a teacher, once I´ve finally paid off my student loans. My family´s all in York and Whitby.

lsgs - Really sorry to hear about your awful NJ tube experience. I hope your GI keeps his Dr. Jekyll personality with you for the foreseeable future!

Cat - great to hear that your colleagues are all so understanding!

The gastro unit is good, the staff are lovely. Just not one of the consultants haha.
They have an investigations unit and a treatment unit.. they also have a section for people who go for blood tests and pill cams etc.

I hear what you are saying when you think it could be just an infection. I have doubted my illness many times. But.. IBD can manifest at any time. Just have the tests necessary and see how you get on. The reason I haven't gone for 2nd opinion is because my bowels are manageable. The doctors aren't going to find anything unless I end up having a flare or something (heck they found visible issues with me last year on scopes.. but biopsies were unspecified).. so im happy to continue as I am for now.

@lsgs - the hope for the surgery is to get rid of my headaches. There is some hope to help with my neurological symptoms (blurred vision.. pins and needles and dizziness etc) its a bit hit and miss with the neuro side. But im not going to get better without surgery. So im willing to take the risk.. but I am so scared I hate being put to sleep.

The surgery removes a section of my skull and some of the top part of my spine. So basically exactly as its called - decompression surgery. My brain is too big for my skull haha.. and thus it herniates out through the base of my skull and compresses against my spinal cord.
My last mri also showed an increase in spinal fluid in the centre of my cord. Which isnt good.. this can increase and cause permenant damage to the cord. So the surgery is also preventative

Cat, sounds like you've got a great group of coworkers. and nothing beats a cool, tall lemonade!

Good luck Bozzy! That sounds like a real fun time!

Good luck Ben!

Yippee, oh joy! My chronic d is back in full force. I am so happy I could scream. Well, I could scream but not from happiness. My body does this. I change how I am eating, like when I did the FODMAP diet. after a month, it gets sick again. I am still doing the FODMAP plan (90%) of the time. But, about 3 weeks ago I went gluten free per nutritionists recommendations. My bowels were pretty happy, except the daily pain in the lower right quad. Yesterday the D hit with full force. Luckily I see the surgeon today. I don't know if I am going to make it all day at work though it's so bad. By the time I get back to my desk I feel the urge to go again.

Some days I just hate this life! Thank goodness I had some Immodium in my desk drawer. Let's hope 2 pills work!

OH YEAH, AND I AM NAUSEOUS TOO. And, have a mild headache. Today is a great day.

Ben, that's cool that you're trying to learn Chinese (Mandarin? I know there are multiple different sub-sets of the Chinese language). I've been trying to teach myself Korean and I'm still in the early stages of that, but it's going well so far. I love the Asian languages and I'd really love to learn Japanese, but the written part of Japanese (kanji) is so difficult! You just have to memorize thousands of characters, and that's intimidating. But with Korean, there's actually an alphabet, so all you really need to know is a handful of Hangul characters and how to stack them into syllables. It's brilliant. I've memorized the consonants and am working on the vowels. I did actually manage to read a few words yesterday in Korean and I was *so* proud of myself. Good luck with learning Chinese!

Bozzy, I like that interpretation, that your brain is too big to fit in your skull. Your smarts can't be contained! Are you going anywhere fun on your holiday?

Aw, Meg. It sounds to me like a flare. Did the Imodium do anything? I have a prescription for Lomotil, it's basically prescription-strength Imodium. Personally I seem to not respond to Imodium at all, the d just keeps on happening. But Lomotil usually stops things up for about a day, it's good stuff. Do you take anything for the nausea? I take generic Zofran (Ondansetron) and that stuff is magical. It works so well most of the time. For milder nausea I just take ginger, either in capsules or in ginger tea, and that works quite well too. Hang in there! Let us know what happens with the surgeon.

My arthritis is feeling better today - it was killing me yesterday. I went on a long bike ride and felt better, it's weird how exercise helps when it seems like it should be the other way around. Resting and relaxing only seem to make the arthritis angrier! I haven't been sleeping well either. Ever since the weather turned nice, hubby's been having awful allergy attacks and he's all congested and sneezing constantly, and snoring at night. A snoring hubby means Cat gets less sleep and that's not good. So I'm a bit exhausted lately. (I have no pity for hubby because he's clearly sleeping soundly!)

Haha cat - I use the phrase "too much brain to contain"
I would love to learn another language.. but would probably learn something like french (as I still remember bits from school)

I am off to menorca and I cannot wait! Haven't been abroad since my honeymoon.

Quirky - so sorry to hear that the symptoms have flared with a vengeance! what do you think your surgeon will suggest?

I felt really nauseous yesterday and today I nearly passed out at work

No surgery just yet. Ct showed a kidney stone and urinalysis showed blood in my urine. Not much but there is blood. My bp was high too. Surgeon wants to talk with the urologist that saw me in 2011. He wants a gi second opinion before he goes in. He is covering his arse but I am not sure I want surgery so it's okay. I have no clue what I can eat. Rice and broth were too much.

I stayed home today. I fell asleep around 9:30 last night and woke just before 8 to call off work. I am about to pass out again. I am so sleepy. The good thing is I slept that long with no bathroom trips. So sleepy.

So, I just found out some interesting news yesterday. For those who remember me venting about my sister-in-law? (In a nutshell, her marriage was failing but it's better now.) I just found out she's pregnant AGAIN. This will be her 5th kid! And this one, like most of the others, is an "oopsie." (She told me once that she & her husband only use condoms, no other form of birth control, so I predicted she'd get preggo again.) Kids #1, 4, and 5 were all oopsies for her. Kid #3 was planned and I'm not sure about #2. She definitely wanted to stop at 3 though. Soon she'll have 5! She's going to have to buy a bigger house, I think. Her house is tiny but she paid a ton of money for it because it's on a nice chunk of land. Her house has 3 tiny bedrooms, a bedroom for the parents, the two boys share one room, and the two girls share another. I have no idea where they'll put a 5th kid! It's insane. So yeah, don't get me wrong, I love my nieces & nephews, but I don't really need another one. It's difficult enough buying birthday & xmas presents for 4, sheesh. That's my little vent for today.

Bozzy, yeah, something like French would be more useful I'm sure. I actually majored in Spanish in college but I don't remember a lot of it and never spoke it or understood it very well to begin with (native Spanish speakers always talk SO fast, I can never understand what's being said). Korean is just so fun and cool and I'm excited to learn it - I never felt that way about Spanish.

Meg, I hope you can rest up today and all weekend and feel a little better! You mentioned sleeping all the way through the night with no bathroom trips. Do you normally have bathroom trips in the night in a flare? Because that is a big red flag that it's IBD.

I tried to learn Arabic when I came to the Middle East but found it very difficult, partly because the dilect range is so enormous. In the end I got to the point where I could read street signs and restaurant menus and called it quits at that. Spoken I found too hard.

Liam (10) is learning Mandarin & Arabic at school he says they are opposite, written Arabic is easy and spoken hard & written Mandarin is incredibly hard but he finds the spoken easy to pick up and does really well on the oral tests there.

Curious to know what your views on learning Mandarin are Ben? I want Liam to continue with Mandarin in Secondary school (Arabic is compulsary and he must take one of French/Spanish & Mandarin). Then take Mandarin through to IGCSE & IB Diploma level but he's already worried about the workload associated with learning the number of character required to do well in those written exams in high school.

Maree, I don't know much at all about Mandarin, but I know a bit about Japanese and I think it's fairly similar to Japanese. Spoken is pretty easy but written is insanely difficult. There are thousands of written Japanese (kanji) characters and you just have to memorize them, there's no shortcut or trick to learning them. I've heard that Mandarin is really difficult to learn the written part of it so I am not surprised that he's worried about learning that part. If he's up for a challenge, I'd say go for it, but if not, there's no shame in switching to French or Spanish. I found Spanish pretty easy in school, and I sat in on a French class once and I felt like I was understanding a lot of what was said, so either one shouldn't be difficult for him to pick up. I heard a saying once, something to the effect of, once you learn a second language, it's easier to pick up a 3rd language, even easier to pick up a 4th, etc. I'm finding that's ringing true with Korean. Learning Spanish, even though I don't remember a lot of it, it taught me to pay attention to words and language and stuff like that so much more, and I think Korean is coming to me more easily than Spanish did. So no matter what he chooses, I think he'll be fine. Learning multiple languages will only be beneficial, and if he chooses French/Spanish now, he can always go back to Mandarin later. I'm 33 and just starting to learn Korean! It's never to late to learn.

My husband is an IT Consultant, which means we need to live in a transport hub city. Singapore is our preferred location and we'd like to think we'll manage to swing a stint there before Liam leaves home (he has another 6 - 7 years of school in front of him.) Which is why I'd love to see him persist with the Mandarin, he's been learning for 3 years. In recent tests he's come 2nd in his class in the oral component (behind the kid from Singapore) but in the written component, the Japanese & Korean kids are also much stronger as they find it much easier to relate to the characters.

Like you I suspect that he could probably switch across to French or Spanish and catch up pretty quickly if he found it got way too hard. Even if we stay here he can drop Arabic after year 8 and focus on just the one foreign language.

I have thus far successfully eaten rice and avocado. Yay!

Surgeon just called and said he talked with the urologist. He said I was diagnosed with interstitial cystitis but I was never told that. Another time this has happened. He said it was a probable diagnosis. I was told overactive bladder. I need to be seen again as I now have the stone and urine. I may be seen Tuesday and they may do a scope. Interstitial cystitis would explain the pain. I did find out the bowel adhesion in 2011 was on the left not the right.

I am a mess, but I am getting answers. And yes Cat, I have awaken in the night to use the restroom, not just to urinate.

So, an update on my tests.. Stool sample - normal. Blood tests - normal but one (but the won't tell me which one?!) so I have to go for another. Bit annoying because I'm in transition of moving home for the summer so I'm not sure which practice to go through. Right now I've got my dad telling my I'm making this all up and that he "doesn't need to know about my problems" so that is awesome too.

I'd love to learn German! Maybe I should buy a book and leave it in the bathroom..

Meg, I'm going to tag Ihurt here because I know she has IC and maybe she can give you some advice/info. Glad you were able to eat (avocado, YUM!) and I hope you start feeling better.

Rogues, that's unbelievable that they wouldn't tell you which test came back abnormal! And how awful of your father to be so unsupportive. I hope you have other friends/family who are supportive of you?

And yes, I keep multiple books in my bathroom so I say go for it! I have found some good websites for learning Korean, and I've also found some free podcasts that teach vocab words and how to pronounce them. I keep an ipod dock in my bathroom and listen to it when I'm in the tub or on the toilet. So yeah, if you want to learn a language there are lots of good free resources out there, and there's no shame in learning while in the bathroom.

How's everyone else? I hope everyone has a relaxing weekend planned? As for me, the hubby REALLY wants to go see Iron man 3, so I guess I'm getting dragged along to that. I want to go on a bike ride tonight but it's pouring rain, so I will ride the exercise bike instead. The rain makes my arthritis ache, yuck. Other than that, I don't have anything planned for the weekend. I'm hoping to sleep in and generally relax.

Bozzy - Thanks for the info, if I ever end up going to the Hallamshire I'll have to check with you which consultant to avoid.

I love "to much brain to contain" Good luck with your surgery and have fun in Menorca!

Cat - Korean? That's cool. My boss is Korean and I've always toyed with the idea of learning it. Do you ever plan on going there? Or are you learning just for fun? I was a languages major too so I can understand the fascination

Yeah, I'm learning Mandarin. You're right about the other varieties. For example, I live in Shanghai where the local dialect is completely different. It's the first time I'm in a place and not learning the local language, although everyone here is bilingual in Mandarin to some extent.

Maree - It sounds Liam is a bit of a prodigy I totally understand his concerns about the characters, they do take a lot of repetitious work to remember. Japanese kanji are based on Traditional Chinese characters but mainland Mandarin now uses a simplified set of characters which are designed to be easier to learn than the Traditional characters used in Japan, Taiwan and Hong Kong.

Another thing that makes it easier is that in Mandarin there is a link between certain elements of the characters and their meaning and/or pronunciation. I believe this has been largely lost in Japanese, so kanji are way harder to learn for the Japanese learner. If Liam's teachers are pointing out these elements it can make the characters much easier to learn.

For me the characters are the main reason I wanted to learn Chinese (I'm a geek like that ) and I find a little work often really helps them to stick, but I'm only up to around 800 characters and I'm guessing high school would need a few thousand.

Whatever Liam chooses, it's great that he's getting the chance to learn two languages.

Quirkysoul - Sorry you're having a bad time at the moment, but glad you're getting answers!

rogues - I can't believe they are withholding details of the blood test. Hope you get another one soon and like Cat I hope you can find a supportive friend or relative to help you through all this.

And you should totally keep a German book in the bathroom :lol2:

Hi everyone. I haven't posts in a while as nothing's changed in my diagnosis. I see the gi spec next week.

I do have a few questions though. My IBD bloodwork came back indicating crohns. How accurate is that bloodwork?? also, Although I was groggy after my EGD/colonoscopy, but I remember doc saying no indication of crohns in my Colon and small bowel. Can they really see our small bowel with a scope? My other doc wants the pill cam. Most of my sever pain is up around the last rib on my right side.

I recently (since my colonoscopy last month) have been experiencing all over pain. Sort of like the flu that never goes away. Anyone have this?

I'm so depressed from all of this. It's been ongoing now for 5 years and I'm just beside myself. I can barely work

Cassy, my understanding is diagnosis is not possible via bloodwork alone. Do you know which tests came back suggesting the possibility of Crohn's and what the numbers we're for these.

They can not see most of the small bowel with a scope, my niece has Crohn's in the small bowel and in her case the GI was able to see the edge of that inflamation with a scope (often that's not the case) but only test that showed it properly was an MRI.

My understanding is pill cam is the best test for seeing the part of the small bowel not visible on the scope. I hope you get this test soon and you get some answer from it. Waiting is so frustating.

Cat and Ben - It's a really bad practice, I had to phone four times to get an all clear or not. I think it'll be better for me to go through my home doctors now and leave all this waiting malark behind.

Yeah, I've got a few friends that "get it" but a lot of them don't, it's one of those where I tell them I've been diagnosed with IBS and it's just like ..oh, that one again. Just gets associate with overweight people eating badly, which I happen to be and do on occasion, painting me with the brush. Mostly I try to make it something that people don't notice because I do a lot of group work at uni, so I like to be seen as someone to rely on, rather than constantly ill (aka, obviously lazy and an exaggerator, gah).

Reading other people's stories is helping a really bad, most painful in a long while, pain in each side of my hips. Quite confused as I haven't eaten anything abnormal but the nearest I can describe it is it feels like my lower abdomen is having its own heart attack. It's gone really hard as well. When I cough, it feels like I'm going to pass out from the pain, so I'm trying to distract myself from that..

It's nice to know I'm not the only person who does important stuff on the toilet ha! I'd love to know what novels and films were actually conceived of whilst in that magical room.

Good luck tomorrow Melanie. Any connective tissue in the body can react with pain when you have Crohns. There is actually connective tissue between the ribs and sternum (breastbone). For instance I always know when I'm going to flare up when my right Achilles tendon hurts and my left thumb where it joins the hand hurts. What can I say? A truly weird disease!

Marie, thank you for responding. I'm at work but will look at the report and let you know. May I ask what your nieces symptoms were?

Cassy

QUOTE=Maree.;646080]Cassy, my understanding is diagnosis is not possible via bloodwork alone. Do you know which tests came back suggesting the possibility of Crohn's and what the numbers we're for these.

They can not see most of the small bowel with a scope, my niece has Crohn's in the small bowel and in her case the GI was able to see the edge of that inflamation with a scope (often that's not the case) but only test that showed it properly was an MRI.

My understanding is pill cam is the best test for seeing the part of the small bowel not visible on the scope. I hope you get this test soon and you get some answer from it. Waiting is so frustating.[/QUOTE]

Sarah's main symptom was sever stomach pain, which started infrequent & then became increasingly normal over a 4 year period. Followed by rapid weight loss over the last few months before diagnosis. She was 12 when her symptoms started and 16 at diagnosis.

My son is 10 and his symptoms have followed a similar pattern to his cousins, back in October, started with severe pain and failure to gain weight then in the last couple of months he's started to lose weight.

So far only test that has show anything was a fecal calproc test back in October that was 694. First Colonoscopy & Barium Follow Through XRay (in March) we're both clear, as was a fecal calproc retest done at the same time.

He is booked for endoscopy and another colonoscopy this Thursday. His GI is now saying he clearly has a nutrient malabsorbtion problem of some sort (he currently has a BMI under 14.0) and that we need to keep testing until we find the cause. GI has said next steps if we don't get any answers with this weeks tests are PillCam and MRI.

Ben, I'd love to go to Korea someday, but no actual plans or anything. I'm mostly just fascinated by the language. I love K-pop and K-dramas, and I'd love to be able to understand them better (right now I can pick out a few words I know and that's about it).

Cassy, do you know what bloodwork it was? As Maree said, bloodwork by itself is usually not enough to go on for a diagnosis, but depending on what it indicates, bloodwork can at least point you in the right direction. And no, they can't see the majority of the small intestine on the scopes. They can only see the very beginning and the very end. Other tests like pill cam can see the entirety of the small bowel, although it can't take biopsies. So it sounds like the pill cam would be a good next step for you. In the meantime, hang in there. If you haven't already, I'd recommend that you apply for Family Medical Leave (you can get approval for it even if you're undiagnosed - I've done that multiple times myself) so that your job situation will be more secure and you can take sick time if needed without repercussions.

Maree, I wish you and Liam good luck on Thursday! Hopefully they can finally shed some light on things. Please keep us posted!

How's everyone else doing? I've been feeling kind of "off" today. Things have been going just a little bit weird lately, specifically since I started on Delzicol. I'm having more dizzy spells and heart palpitations. I haven't changed anything else so I'm presuming it's side effects from the new med. It's been slightly worrying - the other night, I was lying down in bed trying to sleep, but my heart was pounding. And just now as I was typing this, I had a pretty bad dizzy spell. I've only been on Delzicol for about 2 weeks now so I'll stay on it and give the side effects a chance to go away.

Cat - I hate dizzy spells these last 2 weeks have steadily been getting worse BM wise. Urgency and big D have returned with mild LRQ pain. (Sorry to be gross.. but my anus is so swollen with what I think are haemorrhoids.. thankfully not a lot of pain as such - just on fire haha)
Getting that familiar panic of finding a toilet... go into a cafe only to be told the toilet is customers only.. despite the fact im crouched over ready to pass out.. so I just said "I dont care.. im really unwell and I will buy something on my way out" you'd think a person could see the desperation on my face before making me feel worse. What a b**** haha.

Maree - I hope it doesnt take as long as his cousin, to get a diagnosis. How is he doing lately?

Bozzy, are you able to get a "can't wait" card there? I have one - haven't had to use it yet, but it's like a security blanket and I'm glad to have it. I got mine free here:
http://myibd.org/RestroomMedAlert/index.php
It looks like that one is only available to people in the US though. I'm pretty sure I've heard that there's something similar in the UK, so check into it.

I hate that swollen anus feeling! Unfortunately I know that feeling all too well though. A good cream is a must - I prefer Tucks or Calmoseptine. Tucks is a hemhorrhoid cream, but even if you don't have hemmies, it still works to shrink the inflammation & swelling back there. Calmoseptine, I think it's only available in the US & Canada? You might be able to get it online. It's got menthol in it and it makes everything feel cool and soothed, it's lovley. A sitz bath could help too. And if things are really bad, ask your doc (GI or GP) for some steroid suppositories. I got some called Anucort. They did nothing for my hemmies but they work great on swelling & inflammation. They did give me some minor steroid side effects (I had a harder time falling asleep and I gained about 1 lb a week while I was on them).

Liam has had a better week has put on a pound and started playing football again and is feeling much happier with the world. He's still incredibly thin, his reflux continues to be bad (despite low acid diet & PPI) and it feels like his body isn't able to fight anything.

Neither his foot or his rash (which was treated by dermatologist) are healing as anticipated. So we are still seeing dermatologist every few days to monitor these. At the moment we're persisting with topical creams to try to treat these but I'm concerned they'll need to give him another cause of oral antibitiotics of some sort, which worries me after how sick Augmentin made him.

Hi! So I'm new here but so I'm not sure quite how to do this but I have to say I'm SO glad I found the undiagnose group! Starting a few months ago, I've been experiencing chronic abdominal pain along with nause, diarrhea, excessive mouth sores, and a lot more symptoms that all seem to be linked to Crohn's. I actually have friends who both have CD and they both told me my symptoms are nearly identical to theirs. I've gone through countless blood tests and finally went in for a colonoscopy and sigmoidoscopy last week. Both the colonoscopy and biopsies came back normal, and there seems to be no further explanation. My doctor immediately dismissed the thought of Crohns from the beginning. At first he thought it was a food allergy, but no luck there. Everything I can find is constantly leading me back to Crohns, but with negative colonoscopy and biopsy, I'm lost Can only wait to see what comes next! *sigh*

Maree glad to hear Liam is doing well and gaining weight! Long may it continue

123654932 - crohn's can affect anywhere from your mouth onwards so a negative colonoscopy does not rule it out, it's commonly in the small bowel. Have you had any small bowel imaging? What about blood tests/stool tests?

bozzy I totally feel your pain. I guess for most people illness just doesn't feature on their radar on a a day to day basis, it's difficult for me to get my head round that. Personally I'm back to daily d since they're bringing me off my steroids, so that feeling of planning out your route based on toilets is back It's an awful way to live!

I've got a clinic appointment this morning but I don't think I'm going to go. It's with split personality GI and I don't think I have the energy to deal with him today, haha. Although I do think him telling me over the phone that he'd spoken to my other doctors and they think I might have lupus was slightly unprofessional...

My urologist has inflammatory bowel disease on my medical history. Not ibs. Why does this make me happy?

Lsgs.. I hate toilet planning. But its a hazard we have to deal with. I have had accidents before and its awful.
I cant believe your GI would casually drop lupus into conversation like that. However it does show a level of honesty I suppose. . And at least you know what the are looking for. And for him to speak to other doctors is a great thing.. because often they dont talk to each other and see the bigger picture.

So please go to your appointment. You may be pleasently surprised and your GI might be in a good mood haha xx

Hi 123654932! Welcome to this group. Sorry to hear that you are going through the symptoms of CD. My rheumatologist says that AI illnesses can take years to reveal themselves (and tests give answers) so unfortunately can be a while before you get any answers..

Dont get me wrong.. nobody wants to have Crohn's.. but a diagnosis will help to get you treated.
There are lots of tests that can be done.. and it may be worthwhile seekng a 2nd opinion. As some doctors are willing to treat symptoms without a diagnosis.. and if you respond to treatment they can use that to help actually diagnose you aswell.
So something like a steroid trial could be a good idea

lsgs, what are they basing the Lupus theory on? Have you ever had a raised/positive ANA? Do you get the butterfly rash on your face? Those are the hallmarks of Lupus that I'm familiar with. Have any of your docs mentioned the possibility of Lupus to you before?

Hi 123654932 (I'm going to call you 123 from now on if that's okay!). Welcome to the forum. I hope you can get some answers soon. Bozzy has given you some good information. Has your doctor suggested any other tests that you could have? Have they looked at your small intestine at all? The scopes only see the very beginning & end of the small intestine. So if you haven't had tests yet such as CT scan or MRI of the intestines, or pill cam, it would be worth looking into those as they can see the small intestine.

Meg, I know that feeling. For the longest time in my illness, I really only saw my GI and didn't see my GP. My GI is always pretty careful to not label my illness until he knows for sure what it is, so my GI never really said IBD for the longest time. When I finally did go to my GP, he walked in the room and asked, "So is it Crohn's or colitis?" That made me feel good, to know he knew that it had to be some type of IBD and that he would just put it out there. And when I submit FMLA paperwork to him, my GP always writes "IBD/Crohn's/Colitis" on the forms, and it's oddly comforting to see it in writing. I like my GI but I really like my GP, he's pretty plain-spoken and he calls it IBD even though I'm not a textbook IBD case. I got my physical therapist to write IBD in my file too, apparently she didn't know that IBD and arthritis can be related until I told her about it. I told her about it and she did a bunch of research, and then she thanked me later for telling her. I'm rambling now but I like when things like that happen and a medical professional actually listens to the patient, and I like being told it's IBD because then I know I'm not crazy and it's not "just IBS".

Bozzy, how are you doing today? Going on your holiday soon, right? I hope you feel well enough to really enjoy it!

As for me, I'm feeling a little better - no dizzy spells today anyway and no palpitations either. Work stress is crazy today though! Oh, and I ate some blueberry crepes on Sunday. I have always been able to do fresh blueberries in the past, but not this time. I have been pooing blue-green for 2 days! The odd part is, my hubby said he pooed blue-green as well. So maybe we just got a bad batch of blueberries? Because he's normally healthy as a horse with perfect poos. The other odd thing is, my stomach has been fine, no nausea or cramping or anything, the color of my poo is the only thing that's off right now. So I don't quite know what to think! I won't be having blueberries again for awhile though!

Morning all!

So I'm going for my small intestine CT results today and thanks to the support and information that you guys have provided I am armed with a battery of questions for the doctor.

Hopefully I will come away with a definitive answer and a plan

I'll let you all know how it goes.

Cat, If you have no symptoms, it is probably just the strong color of the blueberries that you are seeing.

I was thinking the same as happy, that when I've read about stool color they normally mention that colored stool doesn't always mean something wrong & to think about what you've eaten as some foods affect color, I know I've seen blueberries listed with beetroot, licorice as a cause of colored stool.

Thanks Happy and Maree, that makes me feel better about the whole blueberry thing. I remember when I first got sick, just before my first flare I was eating a lot of spinach salads. Then I got sick, and as my first flare eased, I was determined to get back to my old eating habits. But suddenly I found that eating spinach salads was making my poo turn green! It never did that until I got sick. So it worries me a bit to see odd colors in my stools, as that just didn't happen back when I was a healthy person. I'm in remission and I can sometimes fool myself into thinking I'm a healthy person again - but stuff like that just reminds me that nope, I'm definitely not normal nor healthy. I'm pretty good but still have quirks from the illness that don't go away even in remission.

Ben, how did the CT results go? I hope you got some answers to your questions if not a diagnosis! Please keep us posted! Got my fingers crossed for you!

Hey all, I'm a newbie here, I posted in my own thread, but thought I'd post in here too. Just feeling pretty down about the whole IBD thing... I really had hoped this was just IBS, but with skin and joint symptoms and the inflammation... it's more likely IBD.

So I have a referral for a colonoscopy, my GP says she'd like to keep treating me for now so I can just have the test, and she'll read the results, if things get more complicated she'll send me to a GI, but her fees are SO low, and she has experience with GI issues, so I feel comfortable with her treating me for now... but I have no idea where to go with my referral. Should I call my insurance? Just go to the local covered hospital? Do I have to meet with the GI Doc?

So yesterday didn´t go at all as I expected. I was convinced the CT would show small intestine inflammation, but it came back clear.

The doctor (4th GI I have seen in as many visits) says she´s ruling out Crohn´s. When I explained the terrible fatigue, listlessness and mild upper-mid abdominal pain I´ve had for the last 6 weeks or so (which only started once the D stopped) she decided to send me for some blood tests (first blood tests I´ve had in the 2 1/2 months of testing!) Apparently the blood tests are ESR, CRP, ANCA and some others related to kidney and liver function.

When I asked what the doctor thought it was if it isn´t Crohn´s, she said 'idiopathic' which I think is doctor-speak for 'buggered if I know!'.

I think I´m about done pursuing this for now. My symptoms are relatively mild, manageable and (fingers crossed) going away. I am losing a lot of work time and my own money with all the tests - every time I go it´s a day off work. Also I found out that, as all this happened before my new job organised my health insurance, I am now going to have difficulty getting insured. Hopefully my company is going to help cover the bulk of my costs so far.

I will go back next week for my blood results but expect them to show nothing. After that I guess I´ll just wait for my next flare up, which I hope will never come

I should feel relieved right now, and I think that´s where I´ll end up, but I´m mostly annoyed and disgruntled with the lack of clarity I guess. That said I know I´m lucky, and I can start putting this behind me (although I´ll definitely be keeping all the test results safe, just in case!).

Thanks for all the support and information you guys have given, you really helped me deal with the ups and downs of the last few weeks and months. I wish the best to all of you and hope you get diagnosed, and that you achieve and maintan remission as soon and for as long a time as possible. Take care! :ghug:

Hi Toni, we chatted a bit already in your other thread, but I wanted to welcome you again to the group. That's interesting that your GP is basically willing to act as your GI for now. I know my GP does colonoscopies (although my GI has been the one to do all my scopes) so I think that is fairly common for a GP to do some GI type procedures like that. I would say have the scope and go from there - if it's inconclusive/normal and your GP comes to a dead end, then definitely go see a GI. Or if you get a definitive diagnosis of Crohn's/Colitis then you should probably see a GI as well, for treatment options. Your GP should be able to refer you to a GI. If not, I would check with your insurance and see what your options are. Good luck with the scope!

Ben, I'm sorry to hear that the CT didn't find anything worthwhile. I hope the blood tests can shed some light on things. I'm sorry to hear about the insurance issues, too. As someone in the US, I can definitely relate to insurance issues & having to pay for tests! I understand you postponing further testing for now, and I hope you don't flare up for a long time to come, but please do get checked out if things continue to be bad. If it is IBD, you could be doing damage to yourself by not getting it diagnosed & treated - scar tissue can develop from untreated inflammation, and the only "cure" for that is to surgically remove it. Anyway, I wish you the best of luck, and please don't be a stranger around here! Your post sounds like a "goodbye" but you're always welcome in the club & the forum, so please do pop in whenever and give us an update or just say hi or have a vent or whatever you need.

Liam's colonoscopy/upper endoscopy was also reasonably clear. It showed one small lump in side wall of stomach near entrance to the small wall, but GI thinks it doesn't look sinister. He's taken multiple biopsies from that sight (plus assorted biopsies from elsewhere) and we'll get the result of those in 10 days. He said it looks like a set of pancreas cells growing in wrong location.

This time around the clean out was an ordeal and didn't work properly. Liam had all the meds prescribed (Fleet & Dulcolax), drank lots of fluid, and followed all the other prep instructions properly. He had very bad pain following prep med and fluids but nothing moved at all until the last couple of hours before we needed to go to hospital.

We checked into hospital at 7:30 and they used enemas to get things moving, which got diarrhea to liquid stage but was still brown. GI decided to go ahead with procedure and use suction to empty the colon.

Procedure was 9:30 and it was almost 2 hours before Liam got back, apparently procedure itself took over an hour.

He woke at 1:30 and at 2:30 they gave him fluid which triggered another bad round of watery diarrhea followed by passing of undigested food chunks (tinned peachs from the previous day breakfast), the nurses said his stomach had been completely empty at time endoscopy so this was material that had been hiding in his small bowel.

This was followed by a vomiting and in the end it was 7pm before they we're willing to discharge Liam.

GI now says that although Liam has daily BM he thinks he is passing old food and that there is an issue with the time it's taking food to transit through his stomach.
His GI has prescribed Domperidone 3 times per day in response to the slow food transit and said he has a diet he wants us to try which he thinks is good for motility issues.

Hello everyone,

Im new here and just looking for your advice and thoughts really.

This is a brief outline of my story:

Tummy trouble started when i was 17-18 years old, i was getting pains and bowel problems. After a number of tests i was told IBS.
This carried on until the past 6 months things have got alot worse, i am now 27 years old, the pain is there all the time and sharp on the right hand side (thought my appendix had burst), bloody/mucus diharrea, completely exusted all the time, weight loss, cant eat or drink anything without feeling pain and feeling the need to run to the loo. I have recently been back to the doctors and have had bloods taken and have been referred to the gastrologist to hopefully get answers to my years of pain etc.
My family history is my mum has had crohns for 35 years so it is in my family.
The doctor and my mum is convinced it is crohns disease, but i am just looking for your opinions.

Thanks in advance and hope to hear your advice/opinions soon

I think I will fit in here! Hello!

I have been in digestive agony since age 14. Because I could not eat, I stopped eating but instead of looking at the pain, the Drs just said I had anorexia and sidetracked everyone.

During "recovery" I was in so much pain that all I could do was lay there and cry. This was just "stonewalling" and "non-compliance" even though I finished the program.

Over the years, I was able to pare down what I ate till I was doing monofoods. This helped a lot. I was basically on rice.

Then the arsenic scare has hit and I have had to go off rice and sure enough, the sheer agony is back.

For me, it is severe bloating to the point I have had people ask if I was pregnant. I have terrible cramps and occasional bleeding/mucous.

One of the worst and isolating symptoms is unremitting gas as well. There is way more gas than could possibly be created with the amount of food I eat, so I assume it is feeding off something in my gut.

I can eat oatmeal and yogurt, but that is still very painful. It is just not so much pain that I am in bed crying.

I have chosen not to go back to Drs after the whole runaround. Had sigs and C'scopes and MRis and blood work. I do have low platelets which can be associated and if I have too much trouble, my potassium goes low. I also have thyroid issues which can go along with Crohn's, too. It is quite clear to me what I have.

Further, I was recently gene tested through 23 and Me which showed I have many genetic variations which bring me to a higher risk of Crohn's. I also have variations which make me a poor metabolizer of meds and toxins, so I have to be careful about all their tests. An MRI with Gadolinium caused me a lot of trouble.

I do not need any Drs to do dangerous tests on me to tell me that.

Anyway, hello!

quirkysoul said:

My urologist has inflammatory bowel disease on my medical history. Not ibs. Why does this make me happy?

Click to expand...

It makes you happy because for so long, they love to say IBS when they do not know and then say, "Stress" Especially to women. it's insulting. :eek2:

Thanks for your reply and your concern Cat! I´m not planning on disappearing completely, just popping by less frequently.

I will keep an eye on my symptoms, and if pain continues after I finish this course of Mesalazine then I will go back to the hospital.

In the absence of any guidance from the doctors I have chalked my symptoms up to an infection I picked up from bad food in Vietnam. Even if it´s just my own (ill-)educated guess, having some explanation helps to pigeonhole this and move on.

Of course if I have another flare up in the future then all bets are off and I will get myself straight back to the hospital

Rockroo19 if your doctor is supportive that's a great start. How long do you have to wait for your appointment with your Gastroentrologist?

Welcome Okrad, I agree you've found the right part of the forum. I love this corner where everyone is in the same boat of looking for answers. For my son Liam and I the period of waiting and looking has been less than a year so far so we only have a small insight into the frustration that people who go undiagnosed for years must feel. Your story of anorexia diagnosis and treatment is sadly familiar, this is what happened to my niece.

I to have been told I have fluid in the pouch of Douglas, as read in a earlier post, I hope it's nothing to worry about on top of everything else

Welcome rockyroo, okrad and ashleigh

How is everyone doing lately?
Sorry im not really around much..

I have been having nausea a lot these last couple of weeks. And I have lowered my sulfasalazine dosage due to big D.. which has helped a little bit... just fed up of feeling bleurgh. Haha

Maree - not long to wait now for his biopsies.. interesting that they think he has a slow transit time. That would make sense from the vomiting side of things. How do you feel about it? Xx

bozzy sorry to hear you'v had a bad couple of weeks.

I'm going to push to have GI run MRI or Pill Cam to try to get a better idea of what is going on in the small bowel, based on our colonoscopy prep experience that feels like it's the spot where things are moving through properly and we've not done any tests at this stage that look there.

I think I'd feel a lot more comfortable about treating this as a motility problem if we we're sure there was no inflamation in the small bowel. My nieces Crohn's is totally restricted to the Small Bowel and her symptoms have been very similar to Liam's.

Hi everyone,

I hope your all well as can be.....

I was at the Hospital this week and they have confirmed that my MRI scan on my small bowel came back fine, which is great news, so now they are thinking I've got Bile Acid Malabsorption, which I need to take a breath test at my GP surgery to confirm this, and live on sachets for the rest of my days. Could be worse I suppose. I asked if they have tablet form of medication instead as I've heard that the sachets are disgusting, but I've to try the sachets as they are more effective and are less expensive to produce. I'll give them a try, has anybody else had these? I think they are called Questran.

Emma, I'm afraid I can't add anything on the Bile Acid Malabsorption front. Just looked it up out of curiousity. Good luck with this next test, hope you find some answers.

TheGhirlEmma, I'm going to tag DustyKat here because I believe her daughter was on Questran for a little while. If I'm remembering correctly, though, Dusty's daughter didn't find Questran to be very palatable.

Bozzy, I'm sorry to hear things still aren't very good. I know I'm starting to sound like a broken record, but you have said a few times that your bowel issues are "manageable" so you haven't pursued a 2nd opinion GI yet. It sounds to me though like it's not so manageable, hun! And I know you're pursuing Chiari surgery soon, but once you recover from that, please do think about getting your tummy issues looked at again. Okay, lecture over.

Maree, that sounds like a good plan. I've had the pill cam done myself, as have a few others in the club, so let us know if you have questions about it. The test itself is really easy, although he may have to do prep beforehand (it varies doctor to doctor - some require full prep, others just require fasting beforehand - I had to do 1/2 prep for mine). I haven't had MR-enterography (one of the few tests I haven't had) but I've heard that's a very good test too, so either one should hopefully shed some light on things.

Welcome to the new members!

Spoke to GI today, biopsis clear.
Lump was not malignant but not pancreas tissue either so will need annual biopsies to check not changing.

GI wants to treat as IBS for now and and monitor Liam's weight & symptoms for a few months then re-evaluate after the Summer. He has doubled the dose of Pariet (PPI) to 40mg a day and increase the Motileum to 30 mg a day.

He says current high calorie diet (including ensure's) that we have Lam on is confusing things and has proposed a low carb/low calorie/ low dairy diet which he thinks could help settle down Liam's stomach.

Not sure that we've got a lot of options other than to give it a try as there aren't any other Pediatric GI's here. But really uncomfortable with this as an approach as Liam has a BMI of 13.8 and the diet reads like a weight loss plan.

hi all.

Im currently undiagnosed and very frustrated.

I have been having "IBS" symptoms on and off for 6 years. I assumed it was just IBS, as thats what the ds used to call it.Abdominal pain, gas, occassional nausea and explosive diarrhoea (especially after anything fatty)/

Suddenly, things got much much worse. Im now 21. Over last summer i started to get "off days" where id get very very nauseous and uncomfortable in my abdomen. After eating anything my stomach would feel as if someone had filled it with gas, the pressure is horrible. Diarrhoea after pretty much anything I ate- then suddenly constipation following that. I have chills, feel fluey and shivery, never quite right. Intermittant stomach pain and pain in the upper right quadrent.

The NHS faffed about for 3 months before getting me in to see a GI, at first she just told me it was IBS and that there was nothing she could do for me. Upset, I left and thought Id never hear from her again. But my stool sample came back with high levels of calprotectin (indicated gi inflammation), so she brought me in for a colonoscopy.... 3 months after our initial meeting. She apologized for thinking it was just ibs, as with those levels she felt something else must be going on.

The colonoscopy showed nothing, but she thinks I might have issues further up,so I have an MRI next month to check things out.

It has taken 9 months to reach this point, im so sick of being sick and housebound....i have had to give up uni for a year and move back home, so id love to get everything sorted soon.... i cant go like this much longer

Maree, I'd be worried about that diet too! The weight fell off of me when I was really ill (before I hit remission) and a low-calorie diet would have only exacerbated things. I was eating as many calories as I could just to try to keep some weight on! I literally would eat multiple "family-size" bags of potato chips each week, and as long as I was able to do that, I could maintain my weight. I couldn't seem to gain, and when another flare came along I'd start losing weight again. I'm rambling again, but I'd definitely be concerned about a diet like that. Maybe just do the diet for a week or two, and watch his weight like a hawk - if he drops weight, which I expect he will, call the doctor and ask for a different plan.

Hi charlottevet, welcome to the forum and the club. I'm sorry you had to join us, but I'm glad you found us. Your symptoms don't sound like IBS to me - particularly the fluey/shivery feeling, you do not get that with IBS. Do you actually get a fever when you're having that feeling? I get that feeling too, chilled and shivery and I feel like I must have a fever - but for me, when I check my temperature, it's always normal! That's frustrating, but at any rate, it's not something that happens with IBS, fever or not. I'm glad your doctor is being thorough and is checking your small intestine with the MRI. Good luck with it and I hope you get some answers soon! In the meantime, hang in there and I hope things are at least tolerable.

@TheGhirlEmma:

Cat is spot on about my daughter and Questran. She found it very unpalatable, not taste but rather the texture. She also found it gave her increased cramping and bloating.
There is a tablet equivalent called Colestid. I don't know if it has the same results but I know there are members here that tried it successfully.

As to my children, they both use psyllium husks as a way of controlling their bile salt malabsorption. It works the same way as Questran by absorbing the salts in the small bowel and therefore reducing the water in the large bowel, resulting in bulkier stools.

Have a look at this thead:

http://www.crohnsforum.com/showthread.php?t=13856

Dusty. xxx

charlottevet said:

hi all.

Im currently undiagnosed and very frustrated.

I have been having "IBS" symptoms on and off for 6 years. I assumed it was just IBS, as thats what the ds used to call it.Abdominal pain, gas, occassional nausea and explosive diarrhoea (especially after anything fatty)/

Suddenly, things got much much worse. Im now 21. Over last summer i started to get "off days" where id get very very nauseous and uncomfortable in my abdomen. After eating anything my stomach would feel as if someone had filled it with gas, the pressure is horrible. Diarrhoea after pretty much anything I ate- then suddenly constipation following that. I have chills, feel fluey and shivery, never quite right. Intermittant stomach pain and pain in the upper right quadrent.

The NHS faffed about for 3 months before getting me in to see a GI, at first she just told me it was IBS and that there was nothing she could do for me. Upset, I left and thought Id never hear from her again. But my stool sample came back with high levels of calprotectin (indicated gi inflammation), so she brought me in for a colonoscopy.... 3 months after our initial meeting. She apologized for thinking it was just ibs, as with those levels she felt something else must be going on.

The colonoscopy showed nothing, but she thinks I might have issues further up,so I have an MRI next month to check things out.

It has taken 9 months to reach this point, im so sick of being sick and housebound....i have had to give up uni for a year and move back home, so id love to get everything sorted soon.... i cant go like this much longer

Click to expand...

I am in the exact same position as you, high faecal calprotectin with clear colonoscopy/endoscopy. Recently went for an MR enteroclysis and couldn't tolerate the NJ tube so now I'm waiting on an MR enterography. Nobody has a clear explanation for why my FCP is high and to be honest I think my MRE will come back negative.

What were your FCP levels?

Mine have ranged from 227-329 but I'm on steroids, so goodness knows what it would be off them!!

Wow, Hi guys. Reading the last couple of pages here has flagged some things for me I have questions on.

Are ANA's related to/associated with Crohns? I had a blood test by my Rheumy last month which showed slightly elavated ANA's (I have connective tissue/EDS) but nothing was said/done

Is slow thyroid linked to Crohns? (I have a slightly low thyroid I need to stay on Levothyroxine)

And I just had a colonoscopy which came back clear but the stool sample had elevated FCP - I am on esomeprazole for an inflamed stomach (if I'm not on it, I can't eat anything solid)

Nice to meet you all. x

Spoke to school doctor today and she said no way should Liam go on diet recommended by Pediatric GI. Mentioned it to a friend from school who has a child who goes to the same doctor and she confirmed that it's the same diet he uses for kids who are in the high risk category for obesity & type 2 diabetes.

Took the diet in and showed his pediatrican today who was shocked and recommended I email GI and check that he didn't accidentally give me the wrong sheet, because she is convinced it must have been a mistake.