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@JBoy-- I'm sorry you're going through this. It DEFINITELY sounds like you need a colonoscopy. Have you asked the doctor about that?

Thanks Chickadee! I have asked and I am awaiting a GI appt here in my home city now, their office is supposed to call me either before the end of this week or next week but I'm off to Vancouver for a GI appt I had booked months ago so I'm going to go for that. Hopefully I can get the colonoscopy and endoscopy in June coming up! My doc also wants me to get a bronchoscopy (where they look at the lungs and windpipe) done too, since I've had a chronic cough with shortness of breath for 7 months, however it's not lung or heart related as both have been tested extensively with normal results.
 
Tiny update - Got a letter today to tell me that I'm on and outpatients waiting list to go see a colorectal specialist, which I find interesting since colorectal surgery is a field that deals with the lower bowel, although the ever so accurate Wikipedia does say that they deal with those that suffer from IBD.

At the bottom it says 'if your condition deteriorates, please get in contact with your doctor/dentist'. I would LOVE to hear a story of somebody who has contacted their dentist regarding their bowels.

I'm a dentist and you'd be surprised what we have to diagnose/refer because doctors won't listen/treat :eek2:

lsgs, it's good to hear from you and I'm glad that LDN is still working well! And, wait, I feel like I missed something - are you coming to the US for a vacation or are you moving here (or both)? Yes, it is very expensive here when you're ill, so I wouldn't recommend moving here unless you can procure some really fantastic insurance coverage. Obamacare was a tiny baby step in the right direction, but we're still nowhere near having anything like the NHS. If you want to move to somewhere America-ish, I would suggest Canada. They're sort of similar to us but of course they have universal healthcare (and way less gun violence, too). Where in the US were you considering moving to? It's a very big, diverse country. Where are you vacationing in the US?

Just vacation! I wish I could move but my qualification doesn't count in the USA. We are going to Florida, my family is going and taking our little niece and nephew, they're gonna have an absolute blast.

True to form I'm sick though! Was really looking forward to Florida but anticipation has been replaced with anxiety. First blip on LDN. Doc thinks I have cholecystitis again and it's just kicked the whole thing off. I don't have horrific diarrhoea/bleeding or anything, just upper abdominal pain and the odd lower cramp so I'm pretty damn sure it's not the 'IBD' again, thank goodness. If it is my gall bladder it's not something LDN would treat so can't fault it there. Doc messed up my bloods so I probably won't know now. Taking a week of steroids to see if it helps. I would honestly rather die than live like this again! So hoping steroids sort the problem out.

Hope you're all doing okay :)
 
I'm a dentist and you'd be surprised what we have to diagnose/refer because doctors won't listen/treat :eek2:

WOW really? I didn't know that dentists could do referrals for that! I have a fantastic dentist, so if need be I'll contact him then haha. Thanks!
 
WOW really? I didn't know that dentists could do referrals for that! I have a fantastic dentist, so if need be I'll contact him then haha. Thanks!

Depends, a lot of dentists won't take enough time to listen to their patients as time is money ££$$$ but given that I'm sick myself, I do, and will phone doctors if necessary. They are normally pretty snippy with me, but let's just say the last patient I did this for was referred to me by her GP because her teeth were making her ill (?!) and after me fighting a battle with her doctors she was found to have a very serious pre cancerous condition. She's having surgery soon.
 
Depends, a lot of dentists won't take enough time to listen to their patients as time is money ££$$$ but given that I'm sick myself, I do, and will phone doctors if necessary. They are normally pretty snippy with me, but let's just say the last patient I did this for was referred to me by her GP because her teeth were making her ill (?!) and after me fighting a battle with her doctors she was found to have a very serious pre cancerous condition. She's having surgery soon.

Wow I can't even believe that, but good on you for being the fantastic dentist you are! My dentist isn't all about $$ thankfully. You are by definition a doctor, so I don't know why they'd be snippy with you.. how rude people get some days, my goodness haha.
 
My dentist is just constantly on at me for drinking too much tea. It comes with the nationality, deal with it!

On another note, is it strange that my doctor never gave me the figures from my blood work? Would have liked to have known what my CRP, PV etc. were. He just said 'high'. Which could mean very slightly or significantly. Seriously this whole diagnosis thing is rattling around in my mind all day long, I just want to know!
 
Lewis mine never told me mine, just said they were high, they must have been fairly poor cos I was referred to the hospital because of them. i want to get a print out of all of my blood at some point. might ask the consultant when I see him next.
 
I think perhaps it is strange Lewis, one thing I have learned is that you have to be assertive if you're going to get help with things like this.

I mean, I just discovered today my protein in blood has been coming back low for some time, yet it has never been mentioned to me before now. GP just said I need to eat more protein and they'd only worry if it was high. I disagree on both points.

And it is not the first time I have been told verbally "normal" then seen different with my own eyes. Which is why I have been insisting on paper documentation where I can with regards to tests. Looks like I need to extend that to being shown computer screens!

:ymad:

Anyway they will be on your medical notes so you're free to phone up and ask this time if you want to. Next time you will know to ask for the details :) All Hospital Labs have different ranges as to what they consider normal but with the details you can usually get a fair idea.

I've got an appointment with a new Rheumy at a new Hospital next week.

Glad because I have wanted that for a long time but i've had my hopes raised and smashed so many times I am struggling to be optimistic about the prospect of getting another look at my case.

Had an awful virus a few weeks ago and been a slow recovery. One night my bowels really played up and was in the loo until 4:30am. It cleared me out totally though including the lingering virus which was good. Felt so much better after that (even though it was exhausting lol) so glad it's gone but still very low energy wise. Life is a struggle although with each day a little less so.
 
Yeah I definitely wished I'd asked more questions now. I think I was too eager to get out of there! What I would have liked to have asked is 'from the results what do you expect the diagnosis/findings to be?' Not sure if he'd be able to answer definitively though.

So many things come up when I google my symtoms. What worries me the most is with the weight-loss, anemia and inflammatory markers I keep coming across bowel cancer. I know the symptoms are similar to IBD, but it's a possibility. Like, what else other than IBD or cancer could it be? With inflammation and my symptoms, you'd think it must be IBD. Something definitely has to be changed so that these conditions can be diagnosed much faster. The amount of people on this forum in the 'undiagnosed' sub-forum is ridiculous.
 
Lewis, there are many things it could be (likely not cancer - possible, but unlikely). There were a couple posts awhile back that addressed this, so I'll quote them here:

I've posted this before in various places. Might be helpful to anyone suffering GI touble:

Chronic intestinal trouble without signs of inflammation is likely to be labeled IBS. IBS seems to be different things to different people. Below is a list of things that people diagnosed with GI trouble have claimed to experience. Most people diagnosed with IBS will find one or more things here that are relevant to them. Some are widely accepted (like FODMAPs), some are controversial (like candida overgrowth, MSG intolerance). I can’t guarantee that all of the information is correct. Common sense rules apply – don’t diagnose yourself, don’t prescribe yourself medication, talk to your Dr before doing anything drastic.



FODMAPs intolerance – Onions, Garlic, wheat, barley, certain fruits and vegetables and grains have fermentable oligosaccharides that trigger intestinal trouble in some people. Common in IBS.

Anxiety – some believe that this is enough to cause functional GI disorders like IBS. Even if it’s not the sole cause, it is likely to exacerbate symptoms or possibly enable the problems to occur in the first place.

Celiac disease or gluten intolerance –Celiac is a well-characterized intolerance to gluten/wheat. It is treated by life-long abstinence from wheat and gluten-containing food. Other gluten intolerances are not as well-defined, but may be treated similarly

Lactose intolerance – inability to break down lactose in dairy products can cause GI problems. Treated by avoiding dairy products and/or taking supplemental enzymes

Dairy intolerance – Sometimes, it’s not the lactose but casein or other components of milk that cause GI issues. Treat it by avoiding dairy.

SIBO (small intestinal bacterial overgrowth) – can cause bloating, discomfort, diarrhea. Treated with antibiotics, probiotics, fiber, low-carb diets.

Imbalance in intestinal microflora – bad diet, antibiotics, etc can result in this. Treated with probiotics, fiber supplements, diet modifications.

Intolerance of artificial sweeteners – aspartame, sucralose, etc

Bile acid malabsorption – intestinal trouble can arise from a reaction to bile salts secreted by the liver (through the gall bladder). Can be treated by drugs to bind up the bile salts and maybe calcium supplements?

Fructose intolerance - I don't know too much about this. Seems like the obvious treatment is to avoid high fructose corn syrup and other sources of fructose.

Oxalate intolerance –Apparently Oxalobacter formigene, the intestinal bacterium that breaks down oxalate for us, can be killed off by antibiotics. Without this, oxalate can cause a variety of problems including IBS-like symptoms. Treatment might include avoiding foods high in oxalate – spinach, strawberries, wheat, oats, tea, chocolate, etc. Possibly helped by taking calcium supplements with meals?

Candida Albicans – Some claim that too much candida albicans in the intestine is the cause of a long list of medical problems including IBS-like problems. The treatment can include a very low-carb diet, probiotics (including saccharomyces boulardii) and antifungal supplements.

Mild IBD – Some think that many cases of IBS are mild cases of IBD where (possibly) the body’s immune system mounts an inappropriate response to intestinal microbes (bacteria, etc). Treated by drugs and maybe diet, supplements, probiotics, etc

C. Diff. - Clostridium Difficile in the intestine can cause serious (even life-threatening) trouble - usually severe diarrhea. It can occur after taking antibiotics. Should be treated immediately.

Salicylate intolerance - salicylate is in some foods, particularly blackberries, blueberries, cantaloupes, dates, raisins, kiwi fruits, guavas, apricots, green pepper, olives, tomatoes, radish and chicory; peanuts almonds, mushrooms. I don't know too much else about this one...

Intolerance of glutamate and/or other excitatory amino acids – MSG appears in prepared foods under different names (hydrolyzed vegetable protein, “natural flavoring” etc). Aspartate comes from the breakdown of aspartame. Some believe that too much of these amino acids can cause a variety of problems including GI troubles. Avoiding MSG and aspartame might help.

Intolerance of histamine in food – present in cheese, beer, wine, pickles, soy sauce, spinach, eggplant, fish, many fermented food and many other things.

Acetaminophen (APAP, Tylenol, Paracetamol) - alters serotonin metabolism and may contribute to functional GI trouble

NSAIDS (Ibuprofen, aspirin, etc) - well known to cause gastric ulcers, might also cause intestinal damage. Possibly linked to microscopic colitis.

Vitamin deficiencies-

Excessive consumption of alcohol

Parasites – giardia, worms, etc – can be treated by drugs

Viral or bacterial infection –

Cancer or other diseases -

SN8888, in addition to what you wrote, I'd like to add that other inflammatory/autoimmune illnesses can cause gastro-type symptoms, and many also respond to things like prednisone. Illnesses like Addison's, Behcet's, Lupus are the ones that come to mind.

There was once a girl on the forum who was having a lot of nausea, vomiting, and dizziness. Then she started having vertigo, and ended up being diagnosed with Meniere's.

Also, someone on the forum was just diagnosed with diffuse systemic scleroderma. I hadn't heard of it but she shared some good information about it in this thread:
http://www.crohnsforum.com/showthread.php?t=59975

Long story short, there are a ton of illnesses that can cause these type of symptoms! And I agree that it can be dangerous to self-diagnose, but on the other hand, when you're having tons of symptoms and your doctors say things like, "It's just IBS, it's women's troubles, it's all in your head, you're just depressed, you need to deal with stress better" etc, of course it's okay to not accept that and to keep fighting for a proper diagnosis. At the very least, we can take some educated guesses. In my case, my doctors ruled out numerous things (it's not celiac, Addison's, nor Lupus) but I respond really well to things like pred and Entocort. So the presumption that both I and my doctors have is, it's probably some mild form of IBD (my GI is leaning towards microscopic colitis). My GI is treating me as though I have IBD, and I have responded very well to those treatments and I spent 2 lovely years in remission. So, while I agree that self-diagnosing can be dangerous, I think it's also dangerous to just accept something like "IBS" or anxiety as a diagnosis if you're really suffering. Untreated, festering IBD can cause scar tissue and strictures and all sorts of trouble. An educated guess is not unreasonable in my opinion as long as your doctors are on board with it and monitor you closely, as has been the case for me.
 
I agree there Lewis, no argument from me! I've been sick for 8 years now (i'm 27, from when the bowel problems started at 19, not counting from fatigue at 16).

All they can ever find with me is inflammation in the blood, and can't get any further.

Been back at the Hospital 4 1/2 years now since the joint pain started.

What's worse is not even getting diagnostic help which is why I am off to see someone new somewhere new. My current Dr has pretty much done nothing since he took over my case from a departing Rheumy 2 years ago.

Lots of auto immune illnesses have the same symptom set as IBD which is why it can be hard to differentiate, then sometimes IBD doesn't "show up" definitively for ages, what a mess! Things like Lupus can affect the bowels really badly. Then there are the even rarer diseases. I know a member here got diagnosed with Behcet's while living in Germany, after many years suffering, as she found out it's not even taught at US medical school and she goes into Drs appointments there now and they go on google!
 
Yeah, as Star said, sometimes IBD just hides really well and takes forever to show up on tests. Case in point, I have an aunt who just recently officially got diagnosed with Crohn's - but she's had symptoms for 30+ years and had every test under the sun. Finally it went untreated long enough (she would take pred off & on as needed) that she developed scar tissue and they were able to finally say that it is indeed Crohn's. She's an aunt by marriage, not blood, so I hope I don't take after her and have to wait that long for a proper diagnosis myself!
 
It is very important to see test results with our own eyes! I had been undiagnosed since 1999.....until recently when I was actually looking to have all my records transferred to yet another GI for a 4th??? Opinion. Upon doing so I realized that all my operative notes, pathology reports, and discharge summary were missing from that date. I had a surgery with bowel perforation and temporary ileostomy @ the time! I knew there was a question of crohns but no one really came out and told me it was definate. So I told the hospital that someone better find those records! Apparently those archived records are kept off site and nobody knew where they had gone! I pleaded with the girl in medical records to find them! Much to my surprise they were located in an old file cabinet within the hospital long forgotten! So I asked for a copy of everything! So when I read the operative report, the pathology it was apparent to me that I had been definately diagnosed!!!! Fistulas and abscesses were found along with a perforated small bowel! So you need to be your own advocate! No one else is going to do that for you! So I was diagnosed recently from old pathology report and operative notes from 1999! Go figure!:eek2::eek2::eek2:
 
It is very important to see test results with our own eyes! I had been undiagnosed since 1999.....until recently when I was actually looking to have all my records transferred to yet another GI for a 4th??? Opinion. Upon doing so I realized that all my operative notes, pathology reports, and discharge summary were missing from that date. I had a surgery with bowel perforation and temporary ileostomy @ the time! I knew there was a question of crohns but no one really came out and told me it was definate. So I told the hospital that someone better find those records! Apparently those archived records are kept off site and nobody knew where they had gone! I pleaded with the girl in medical records to find them! Much to my surprise they were located in an old file cabinet within the hospital long forgotten! So I asked for a copy of everything! So when I read the operative report, the pathology it was apparent to me that I had been definately diagnosed!!!! Fistulas and abscesses were found along with a perforated small bowel! So you need to be your own advocate! No one else is going to do that for you! So I was diagnosed recently from old pathology report and operative notes from 1999! Go figure!:eek2::eek2::eek2:

Jeez - this is what you had to go through to find out? That's absolutely shocking. I'm glad you know, but that's insane. I've transcended from one style of healthcare to another and the latter is so far rather uninspiring, seemingly disinterested, and costly. I do agree you need to be your own advocate, but this seems like you had to go to extremes.
 
Wow, Chuckmya. That's crazy.

I have been reading as much as I can to educate myself in this disease and to help be my own advocate, I know that sometimes you really do have to push for things and be assertive. That's difficult for me to do because I am not really an outgoing or assertive person (and I'm British, lol). But I am determined to be a good advocate for my own health. Definitely good to get your records or at the very least look over them with your doctor or make sure they are explaining things well to you.
 
@ Gemling.... I'm a very shy person and believe me I'm so glad that I finally decided to be more assertive! Finally diagnosed and in remission we believe! Just gotta have a colonoscopy AGAIN to confirm. MRE was neg for any active disease or inflammation! :ybatty::ybatty::ybatty:
 
@ Gemling.... I'm a very shy person and believe me I'm so glad that I finally decided to be more assertive! Finally diagnosed and in remission we believe! Just gotta have a colonoscopy AGAIN to confirm. MRE was neg for any active disease or inflammation! :ybatty::ybatty::ybatty:

That's great news - that you've got a diagnosis and that it's in remission. It seems like you're finally getting somewhere. It's hard to treat when you haven't got a diagnosis. I am hoping that the colonoscopy is a confirmation and not more question marks.
 
How long until your colonoscopy, Chuckmya? Glad they are giving you another to confirm everything. I had all the necessary tests and results to be diagnosed when I ended up in A&E, all the results we just sitting in my file on my consultants desk. Colonoscopy confirming the inflammation, biopsies confirming it, MRI showing thickening of the small intestines and other signs of inflammation.

It's craxy how long it can take for them to properly diagnose and seems like an eternity. I hope that everyone who's currently undiagnosed gets testing swiftly and hopefully onto treatment soon. Now that I am getting treatment, I am realising just how ill I was.

Hugs to all!
 
Prob sometime in July! Have to call next week to schedule it! My GI doc though didn't recommend any meds for me unless this 2nd colonoscopy reveals ulcers as it did in February of this year! So we shall see!! Thanks everyone for the support and comments!!!:tongue::tongue:
 
Prob sometime in July! Have to call next week to schedule it! My GI doc though didn't recommend any meds for me unless this 2nd colonoscopy reveals ulcers as it did in February of this year! So we shall see!! Thanks everyone for the support and comments!!!:tongue::tongue:

I rang the nurse for my GI specialist on Thursday enquiring (British English there) about whether they got the dummy cam in (pre pill cam) and they haven't even had the courtesy to just call me back. I guess I'll be making an appearance next week. With the new symptom of weak bowel / diarrhea and bouts of nausea without pain, it's especially unusual for someone who has spent most of their life fighting constipation! No pain though -which is good!
 
Sorry i've dissapeared off the face of the earth recently! I'm still around! I have been incredibly poorly, in an out of the doctors every two days! Been having fits, the usual stomach stuff anf now crippling jont pain to the point where i cant walk. No explanation, no diagnostic help. I'm stuffed really, i've hit rock bottom... only thing keeping me up now is my business thats keeping me busy, really grown over the past 5 weeks! I don't know what to do anymore and its become unbareable to live with... just another day in the life of Rose! I'll be back properly soon, just trying to get my.health in a better state and these fits.have to stop! I hope your all well!
 
Sorry i've dissapeared off the face of the earth recently! I'm still around! I have been incredibly poorly, in an out of the doctors every two days! Been having fits, the usual stomach stuff anf now crippling jont pain to the point where i cant walk. No explanation, no diagnostic help. I'm stuffed really, i've hit rock bottom... only thing keeping me up now is my business thats keeping me busy, really grown over the past 5 weeks! I don't know what to do anymore and its become unbareable to live with... just another day in the life of Rose! I'll be back properly soon, just trying to get my.health in a better state and these fits.have to stop! I hope your all well!

Hi RosannaKate,
You spoke of fits - you mean stomach issues, or seizures? Sorry for asking - I have epilepsy (inactive, but still there). What I really wanted to say is that if you've hit rock bottom, there's only one direction you can go. Have you got familial support and such? I know no one really understands what you're going through, but having some 'understanding' that you're really struggling can help a bit. What kind of business do you have? It sounds like you have some good news there's growth, but I'm sure that's hard to manage when you're in crippling pain. When you said no diagnostic help - do you mean 'the doctors etc' don't know what is the cause, or you can't afford the tests? I know they can be outrageously priced.
 
Glad that you're at least not in pain, Eternal_Howl. I hope they get the dummy cam in next week for you.

Me too, but I'm not sure if you have to go through the same prep on a dummy cam as you do on a pill cam. If so, I'm hoping I can do that on a Sunday. Just because I need to drink and eat while working and really can't afford to miss any more time off work than necessary. My family of 3 relies on my income, which isn't wonderful, but it's better now than when I first moved to the US 5 years ago. I was a bit shocked at the wage decrease, but then I saw day-to-day living was cheaper, if you don't think about health, insurance of any kind and medical bills etc.
 
Hi RosannaKate,
You spoke of fits - you mean stomach issues, or seizures? Sorry for asking - I have epilepsy (inactive, but still there). What I really wanted to say is that if you've hit rock bottom, there's only one direction you can go. Have you got familial support and such? I know no one really understands what you're going through, but having some 'understanding' that you're really struggling can help a bit. What kind of business do you have? It sounds like you have some good news there's growth, but I'm sure that's hard to manage when you're in crippling pain. When you said no diagnostic help - do you mean 'the doctors etc' don't know what is the cause, or you can't afford the tests? I know they can be outrageously priced.

Fits as in seizures, bit scary really. I have no support whatever, i have the complete opposite, people bringing me down, telling me i lying, telling me to just shut up and get on with it. So nope, no support in the slightest.
I make handmade home decor and have just set up on facebook as a start to online and then trying to work on a website for it atm.
Its all veey hard to manage when i can hardly walk alot of the time. The doctors have given up on me, i'm in the UK so have the NHS luckily! But i'm no closer to finding a diagnosis and its all just pretty useless.
 
RosannaKate so sorry to hear you've been so unwell!!:(:(:(. Have you ever been tested for late stage Lyme disease? I have a very good friend who was just diagnosed and she was suffering with seizures, severe joint pain as well as IBS/IBD symptoms as well. Google late stage Lyme disease and see for yourself if your symptoms match!!!! Good luck and again so sorry you're feeling so poorly!!! Charleen
 
Rosanna, it must be so difficult going through all that you are with no support. As for the NHS, are we really that lucky if the doctors are failing to diagnose you and have pretty much given up on you? You're having seizures for gods sake, on top of IBD symtoms - you should be top priority!

Really hope you get things sorted and do try and be more adamant with the doctors if you aren't already. They're obviously missing something. Seizures don't just happen for no reason, nor do IBD symtoms.
 
I've tried with the doctors, i've been through so many of them and noone can help or find out whats wrong. They've put the seizures down to my heart rate but i swear thats crap they are just trying to fob me off as they can't be bothered!
I've never heared of it Charleen, i'll have a look! Thanks!

I'm going to phone monday and demand they do something because i'm getting annoyed now, they are just saying its probably an allergy but they are refusing to allergy test me, god only knows why!!! Can't win! But putting my foot down, not having it anymore!
 
Fits as in seizures, bit scary really. I have no support whatever, i have the complete opposite, people bringing me down, telling me i lying, telling me to just shut up and get on with it. So nope, no support in the slightest.
I make handmade home decor and have just set up on facebook as a start to online and then trying to work on a website for it atm.
Its all veey hard to manage when i can hardly walk alot of the time. The doctors have given up on me, i'm in the UK so have the NHS luckily! But i'm no closer to finding a diagnosis and its all just pretty useless.

I'm not sure about the NHS, but I'm originally from New Zealand where we had both a public national health system and a private health system. Public health is not perfect, but I have experienced fabulous care publicly and questionable care privately (in the US). In NZ, I didn't go private often.

People can say you're lying, but you know the truth. If you're having seizures, you need to see a neurologist. I'm not sure about the waiting lists over there, but I would strongly recommend you try and get a doctor's referral to see one. They might be able to get you on some meds to help alleviate some of the seizures. I don't say all of the seizures, because while I've been rather fortunate in that department, I feel like I'm a rare 'case'. If you see a neurologist, they will probably perform an EEG to test for epileptic activity or to determine whether the seizures are epileptic in nature or something else. The drugs often prescribed can make you feel drowsy, but some times that can wane if you give your body a chance to get used to them. In any case, you need some relief and to take back a little control over your body. If you can do that, you'll feel a bit better psychologically.

What type of seizures are you having? Convulsions or ones where you're kind of lost in space or 'away' for a bit? Do they happen while awake, or when you go to sleep and relax for the night? I can use terminology, but I prefer to just go with what most people understand. I've had epilepsy since I was 8, but diagnosed after my second at 9-years-old.

A full night's sleep is a must - you need your rest. No matter how busy you might be, please make time for sleep. 7-9 hours is the generally agreed need for the brain. It's the first course of medication you have to put on your priority - adequate sleep.

The doctors don't know what's going on, or they wouldn't have given up. I'd say tackle one issue (even if it may be all related) and you might find that helps. I had a doctor not want to take me on as a patient because he said I was too complicated. I told him, I just need someone who is interested to prescribe my meds as I was fully aware of what my seizures were. I also got migraines.

Also, were you on medication recently that you came off abruptly? Some medications, when stopped suddenly can bring on seizures.

GPs or general physicians can get overwhelmed. Specialists, whether it's a GI doc or neurologist, are generally well more 'specialized' and in my experience, they like someone who takes an interest in their own health.

How long have the seizures been going on?
 
Hi my name is Chris I am a 33 year old male who has had symptoms on and off for about 9 years and it is only over the past year it has got worse and not gone into remission.
My symptoms are loose stools, pain in my lower right stomach also painful cramping in my stomach, belching, nausea, headaches, fatigue, my left eye always get sore no idea why, neck pain and can never lie down flat in bed.
Been to the doctors and they sent me to see a Gastroenterology consultant.
He told me the pain in my right side was a trapped nerve which i thought was odd but ok, he then sent me for a camera both ends and to have biopsy's done which i had done and hey all came back clear which is great but its not helping me get better. He then sends me for a ct scan and that also comes back clear and then tells me its just ibs and to take omperazoles which just give me bad headaches. This was 3 months ago an i am not getting any further help i feel very alone and i feel my symptoms are getting worse I really think it is crohns i am suffering from but i was told it was not as my tests were clear. I have seen a doctor recently about the nausea and he just gave me tablets with lactose in which he knew i could not take as i am lactose intolerant. I am alone in this fight it feels like they think i have ibs just deal with it.
Has any one else been in this situation and any help or advice would be great thanks.
 
Hi my name is Chris I am a 33 year old male who has had symptoms on and off for about 9 years and it is only over the past year it has got worse and not gone into remission.
My symptoms are loose stools, pain in my lower right stomach also painful cramping in my stomach, belching, nausea, headaches, fatigue, my left eye always get sore no idea why, neck pain and can never lie down flat in bed.
Been to the doctors and they sent me to see a Gastroenterology consultant.
He told me the pain in my right side was a trapped nerve which i thought was odd but ok, he then sent me for a camera both ends and to have biopsy's done which i had done and hey all came back clear which is great but its not helping me get better. He then sends me for a ct scan and that also comes back clear and then tells me its just ibs and to take omperazoles which just give me bad headaches. This was 3 months ago an i am not getting any further help i feel very alone and i feel my symptoms are getting worse I really think it is crohns i am suffering from but i was told it was not as my tests were clear. I have seen a doctor recently about the nausea and he just gave me tablets with lactose in which he knew i could not take as i am lactose intolerant. I am alone in this fight it feels like they think i have ibs just deal with it.
Has any one else been in this situation and any help or advice would be great thanks.

Were you in pain at the time of the scans, or had it settled down? I had tests done several years ago (endoscopy and CT colonography) and they were inconclusive. They gave me some pills for bloating and gas and that's all they could. Now, about 8 years later, something is showing up in my tests. Was the doctor you saw a specialist or just a primary care provider / general doctor ?
 
Hi thanks for reply they were a specialist in gastro. Thinking about it yes I was not in pain when I had the tests done The only thing they told me was my white blood cell count was high. my consultant seemed nice but did not want to explore further options of ibd she was more concerned about my weight loss and wanted to make sure i did not have colon cancer was scary times. but when my tests were all clear I got no further help just a letter saying it is just ibs and to see my doctor.
 
Hi thanks for reply they were a specialist in gastro. Thinking about it yes I was not in pain when I had the tests done The only thing they told me was my white blood cell count was high. my consultant seemed nice but did not want to explore further options of ibd she was more concerned about my weight loss and wanted to make sure i did not have colon cancer was scary times. but when my tests were all clear I got no further help just a letter saying it is just ibs and to see my doctor.

Well it sounds like the consultant was right in checking for the worst possible thing. Best to have that ruled out and I'm glad they have! Have you noticed any particular food that might trigger a bout of the pain and nausea? Being extra hungry, going too long without food? Are you getting enough fluids?
Is it possible to get tests while you're still enduring an attack? They might be able to catch sight of something then. The reason I ask is that I had severe pain for about 4 days recently, waited until the next business day, called in sick to work and went to the doctor who ordered a CT with contrast. It showed up 3 different things. Admitted to hospital and while there, they did a series of x-rays with barium On the second day in the hospital - and by now the pain is gone, the x-ray showed up nothing remarkable. If I had gone to the hospital when I was doubled over in pain, I'm sure it would have looked even worse had I had a CT, but I was concerned about cost. Catching this for you, might be about timing of the tests. Just a thought based on recent experience and prolonged undiagnosed illness.
 
Well it sounds like the consultant was right in checking for the worst possible thing. Best to have that ruled out and I'm glad they have! Have you noticed any particular food that might trigger a bout of the pain and nausea? Being extra hungry, going too long without food? Are you getting enough fluids?
Is it possible to get tests while you're still enduring an attack? They might be able to catch sight of something then. The reason I ask is that I had severe pain for about 4 days recently, waited until the next business day, called in sick to work and went to the doctor who ordered a CT with contrast. It showed up 3 different things. Admitted to hospital and while there, they did a series of x-rays with barium On the second day in the hospital - and by now the pain is gone, the x-ray showed up nothing remarkable. If I had gone to the hospital when I was doubled over in pain, I'm sure it would have looked even worse had I had a CT, but I was concerned about cost. Catching this for you, might be about timing of the tests. Just a thought based on recent experience and prolonged undiagnosed illness.

Hi I find wheat is trigger, milk as i am lactose intolerant, pork eggs and too much tomato.

but some times the flare ups can strike when i have not eaten any of my known trigger foods, I am just getting over a flare up I had 2 days it hit me hard left with a headache and completely exhausted.

I try to drink as much fluid as i can but can be hard when i am at work.

I only drink water as fizzy drink alcohol and fruit juices do make me feel worse.

The sickness side nothing works even if I stick to a strict diet, i always feel sick at night always the worse i would love to be able to sleep flat at night.

The tests in uk is done by the nhs and there long waiting lists for scans as I have already had ct scans xrays and cameras they do not like to re do them as my tests were clear very silly I know.

Going back to the food I do notice if I do not eat for long periods it can cause more problems and some times if have not eaten for like over 3 hours i sometimes get the shakes and feel like i have to eat quick very odd.
 
Hi I find wheat is trigger, milk as i am lactose intolerant, pork eggs and too much tomato.

but some times the flare ups can strike when i have not eaten any of my known trigger foods, I am just getting over a flare up I had 2 days it hit me hard left with a headache and completely exhausted.

I try to drink as much fluid as i can but can be hard when i am at work.

I only drink water as fizzy drink alcohol and fruit juices do make me feel worse.

The sickness side nothing works even if I stick to a strict diet, i always feel sick at night always the worse i would love to be able to sleep flat at night.

The tests in uk is done by the nhs and there long waiting lists for scans as I have already had ct scans xrays and cameras they do not like to re do them as my tests were clear very silly I know.

Going back to the food I do notice if I do not eat for long periods it can cause more problems and some times if have not eaten for like over 3 hours i sometimes get the shakes and feel like i have to eat quick very odd.

Do you get bad heartburn at night? I asked because you mentioned at night you couldn't sleep flat. NHS waiting lists are probably akin to New Zealand waiting lists. Do they have a 'private sector' as well as the public? I'm not aware of it, but wondering if you can 'jump the queue' so to speak. I also understand why they are reluctant to re-test because it's all about funding. Public health care isn't perfect, but in my personal experience it did save my life, so it's not all bad. In the US, you'd probably have a heart attack over the bill from life-saving treatments!

The shakes often indicate low blood sugar and if you've lost quite a bit of weight, I imagine your body is trying to switch over to burning other fuel that you may or may not have. Also could be deficiency in something, but not sure what, since I'm not an expert on holistic medicine.

Have you tried going gluten-free? I know that doesn't account for tomatoes (which are pretty acidic). Gluten is in a lot of foods and often not obvious. Even some meats contain gluten in their preparation. I've also found that anything and nothing can trigger a bout of pain. It's incredibly frustrating, I know.

If you're not keen to go the gluten-free route (I know it means a heavy modification in food and lifestyle (tried that myself), perhaps you could keep some basic crackers or pretzels on hand so you don't get to feeling starving and nauseous. I've been doing that the past few days because I've been getting nausea and I think it's helped a little. If you're gluten-intolerant, then I don't recommend them.
 
Do you get bad heartburn at night? I asked because you mentioned at night you couldn't sleep flat. NHS waiting lists are probably akin to New Zealand waiting lists. Do they have a 'private sector' as well as the public? I'm not aware of it, but wondering if you can 'jump the queue' so to speak. I also understand why they are reluctant to re-test because it's all about funding. Public health care isn't perfect, but in my personal experience it did save my life, so it's not all bad. In the US, you'd probably have a heart attack over the bill from life-saving treatments!

The shakes often indicate low blood sugar and if you've lost quite a bit of weight, I imagine your body is trying to switch over to burning other fuel that you may or may not have. Also could be deficiency in something, but not sure what, since I'm not an expert on holistic medicine.

Have you tried going gluten-free? I know that doesn't account for tomatoes (which are pretty acidic). Gluten is in a lot of foods and often not obvious. Even some meats contain gluten in their preparation. I've also found that anything and nothing can trigger a bout of pain. It's incredibly frustrating, I know.

If you're not keen to go the gluten-free route (I know it means a heavy modification in food and lifestyle (tried that myself), perhaps you could keep some basic crackers or pretzels on hand so you don't get to feeling starving and nauseous. I've been doing that the past few days because I've been getting nausea and I think it's helped a little. If you're gluten-intolerant, then I don't recommend them.

Hi I can not lie flat because yeah i do get a burning in my chest and stomach but mostly if i lie flat makes me feel more sick.

We do have a private sector but yeah its scary expensive Its something i have talked about but with the prices so high its really not a option as i can only work part time due my illness.

I have never thought about low sugar count that does make a lot of sense thanks I need to go back to the doctors and ask them about that.

I asked my doctor to find out in my blood tests if i can not have gluten but he said it came back clear but I have found through watching what i eat I can handle small amounts of wheat normally i can have it twice a week at a push.

I have found snacking on gluten free oat biscuits and porridge do help it does seem that is what I am living off at the moment :lol:.

Thanks again for the kind reply's i always thought i was alone out there. Thanks again.
 
Hi I can not lie flat because yeah i do get a burning in my chest and stomach but mostly if i lie flat makes me feel more sick.

We do have a private sector but yeah its scary expensive Its something i have talked about but with the prices so high its really not a option as i can only work part time due my illness.

I have never thought about low sugar count that does make a lot of sense thanks I need to go back to the doctors and ask them about that.

I asked my doctor to find out in my blood tests if i can not have gluten but he said it came back clear but I have found through watching what i eat I can handle small amounts of wheat normally i can have it twice a week at a push.

I have found snacking on gluten free oat biscuits and porridge do help it does seem that is what I am living off at the moment :lol:.

Thanks again for the kind reply's i always thought i was alone out there. Thanks again.

If you get the shakes, after several hours of not eating, it's usually a drop in blood sugar levels and is fixed by eating something. Porridge is good for you. You said you couldn't have too much gluten. Sometimes oats end up being put into the same class of foods to avoid if you're gluten intolerant, but not everyone that is having issues with gluten has issues with oats. I know, it's weird. Everyone is different and finding ways to 'feel' normal will be different for everyone too. You're definitely not alone! I've found this forum really helpful over the past week since I joined. It's a space to vent, ask questions etc where people who are or have experienced GI issues can actually identify.
 
Hi everyone. I am part of the un diagnosed gang. Hopefully it will be this month I am told what I have...I say hopefully as I have every single symptom of crohns/ibd and I just want to get started on medication!

It's interesting to read everyone's stories, it puts my mind at ease to read others are trying out the same things as me. I'm in bed just now exhausted even though I slept 14 hours last night and napped twice today (I have a very understanding husband!) I have my hot water bottle aswell as my medication and everytime I attempt to get up
I am so dizzy and weak. I have been in hospital a few times over the last couple of months, once to get gallbladder out but as soon as I recovered from that then ally new symptoms started :( rubbish time!
 
Hi everyone. I am part of the un diagnosed gang. Hopefully it will be this month I am told what I have...I say hopefully as I have every single symptom of crohns/ibd and I just want to get started on medication!

It's interesting to read everyone's stories, it puts my mind at ease to read others are trying out the same things as me. I'm in bed just now exhausted even though I slept 14 hours last night and napped twice today (I have a very understanding husband!) I have my hot water bottle aswell as my medication and everytime I attempt to get up
I am so dizzy and weak. I have been in hospital a few times over the last couple of months, once to get gallbladder out but as soon as I recovered from that then ally new symptoms started :( rubbish time!

Hi Suzie,
First up, I am sorry to hear about your rather debilitating symptoms. Unfortunately, sometimes with surgery, particularly in the stomach area, when you mess with it, it gets grumpy and lashes out. I'm hoping that you can get your diagnosis ASAP so you can look at treating it and wiping out some of that fatigue. It's good you have a supportive husband. Mine's like that. He may not know what it's like, but it's nice when we have someone in our corner that supports us regardless. I call that a best friend.
 
Thanks for your reply. We were both really confused at first as we knew nothing about crohns and bowel problems but we have both been spending some time reading up about it and familiarising ourselves with it.

I'm being positive today, I am up dressed and on my way to work with a smile on my face...it may be puffy from tiredness but that's ok :) I hope u are feeling ok today!
 
I had to quit my job today, it is to hard, my job was cleaning at peoples houses, who aren't able to do it themselves..
Pfffff when is it the 23rd of june then I can finally go to hospital..

How the hell am I going to survive without a job, I have no money now..
 
Thanks for your reply. We were both really confused at first as we knew nothing about crohns and bowel problems but we have both been spending some time reading up about it and familiarising ourselves with it.

I'm being positive today, I am up dressed and on my way to work with a smile on my face...it may be puffy from tiredness but that's ok :) I hope u are feeling ok today!

Had a good day yesterday. No headaches, no body aches. It was wonderful. I hope you are doing a bit better. Take one day at a time. It's good that your hubby is on board with understanding the condition. My hubby is, but not so much the reading. He'll listen to what I say (including all my moaning and complaining), which is just as vital and takes on board the most crucial things.
 
I had to quit my job today, it is to hard, my job was cleaning at peoples houses, who aren't able to do it themselves..
Pfffff when is it the 23rd of june then I can finally go to hospital..

How the hell am I going to survive without a job, I have no money now..

Have you got family you can turn to, Leanne? Is there a sickness benefit or something you can apply for in the Netherlands?
 
Have you got family you can turn to, Leanne? Is there a sickness benefit or something you can apply for in the Netherlands?

No my family lives in England, and my mum is ill so only has money what the government gives.
No only when you have a diagnose, so I hope I get a diagnose soon, but I don't think so, I have been like this for 2 years now.. And allready had some tests..
 
No my family lives in England, and my mum is ill so only has money what the government gives.
No only when you have a diagnose, so I hope I get a diagnose soon, but I don't think so, I have been like this for 2 years now.. And allready had some tests..

I'm not familiar with how things work in the Netherlands. I have a friend there, but that's about it. I'm originally from New Zealand, and know what it's like when you're in a foreign country and trying to navigate the system. Sorry to hear your Mum is ill. I hope you get a diagnosis soon. You need to push for it.
 
I'm not familiar with how things work in the Netherlands. I have a friend there, but that's about it. I'm originally from New Zealand, and know what it's like when you're in a foreign country and trying to navigate the system. Sorry to hear your Mum is ill. I hope you get a diagnosis soon. You need to push for it.

Yeah my mum has been ill all my life.. It is not a foreign country for me lived here all my life but still, I know nothing about it.. I will! Thankyou
 
Anyone had raised amylase?? Might have pancreatitis :(

Hi, I had raised amylase when I was in hospital in November but the doctors/surgeons never questioned it and it went down itself. This was when I was in with a gallbladder attack so it might have been something to done it's that
 
Had a great first appt with my new GI today! Got my endoscopy and colonoscopy booked for July 4th- 11:30am. One more month before a diagnosis! :)
 
I got a call from the GI's office today. They said they're waiting for approval for my insurance company that the Pill cam is a medical necessity. I'm thinking ...I just read something a wee while ago that compares the cost of a pill cam vs the cost of colonscopy and it's about $4k difference! Surely, that would be good enough. It's much cheaper (or so I thought). Anyway, we'll see what happens.
 
Hi, I had raised amylase when I was in hospital in November but the doctors/surgeons never questioned it and it went down itself. This was when I was in with a gallbladder attack so it might have been something to done it's that

Thanks for that. I had to go to out of hours last night, the doctor (once again) pressed and said the tenderness was over gall bladder.

Which test does that show up in?

It's a blood test, it shows problems with gall bladder/pancreas. It looks like it's my gall bladder again judging by my visit to OOH last night. 4th hospital visit for treatment in a year for the one problem, you'd think they would just remove it ffs.

I have to say the out of hours service I have where I am is amazing. I called the helpline at 11pm, a nurse phoned me back, then a doctor phoned me back, was up at the hospital for 11:20 and out by 11:40 having had the injection I needed (that I can't understand why my GP didn't give me). Can't beat that service!

Btw has anyone been on cyclizine? My GP gave me it yesterday and I took two tabs at different times and both times I was really drowsy, could hardly string a sentence together and felt generally quite spaced out. Has anyone else experienced this?
 
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My gallbladder had no stones just a small polyp but that wasn't causing concern. I had problems for a long time and they eventually removed it. After the op they said it had previous signs of inflammation and infection but everytime I had blood tests they came back normal! Frustrating
 
My gallbladder had no stones just a small polyp but that wasn't causing concern. I had problems for a long time and they eventually removed it. After the op they said it had previous signs of inflammation and infection but everytime I had blood tests they came back normal! Frustrating

Jeeez that is shocking. How did they eventually find the polyp?
 
After 3rd ultrasound. I was just so glad to get it removed, one less thing to think about. But 3 weeks later all tees crohns like symptoms appeared and haven't gone away!
 
Yeah I do the same, I'm doing filofax but sometimes that is even to heavy for me. It is 3.20 pm here now, im in the shops but even that is too hard for me, I have to stop a few times... buuhhh yeah I do the same look for my symptoms but it makes me crazym I just want a diagnose!!!
 
Just try and take it easy as much as u can, it might be boring but do as your body tells u! Hopefully u don't need to wait to long to be diagnosed.
 
Thank you,
I have been waiting for 2 years..
Is there a possibility that you get diagnosed eventhough your colonoscopie is clear?
 
Yes, you can get diagnosed even if you have a clear colonoscopy. Crohn's can manifest anywhere in the digestive tract, literally anywhere from mouth to anus, so it may not be in your colon - if it's in the small intestine, the scopes can only see the very beginning and the very end of the small intestine, so the scopes likely wouldn't find anything if you've got illness in your small intestine. Also, even if you do have illness in your colon, both Crohn's and microscopic colitis have "skip patterns" meaning the inflammation is patchy. If you have Crohn's but it's not particularly active at the time of the scope, or if you have microscopic colitis (which is literally, the inflammation is microscopic and can't be seen visually), then they'd have to basically luck into biopsying the right areas in order to find it. I don't mean to be a bummer, but sometimes it takes years and repeat tests in order to find the cause of your symptoms. I have been ill for close to 5 years now with still no solid answers, and my aunt had symptoms for 30+ years before they found her Crohn's (in her case, it finally went untreated for so long that she developed scar tissue, and they were able to diagnose her based on the scar tissue).

Yes, it's frustrating and horrible and exhausting, but unfortuantely this isn't a perfect process and there's no one test that will be guaranteed to get you a diagnosis. Be patient, keep fighting, don't give up. Sometimes, like with my case, it's more just ruling out everything else and then trying trials of medication - that's what has worked for me, we've ruled out other things that could be causing my symptoms and I respond very well to IBD medications. Again, it's not perfect, but it makes my life livable. So don't give up!
 
Thank you for your answer cat-a-tonic, that helps me loads!!

But if it is in your small intestine, what are the syptoms?
 
Everyone can have different symptoms, there's not one set of symptoms that tells the doctors it's definitely this or that. That's another reason why it's so difficult to diagnose sometimes! If you suspect you might have Crohn's in the small intestine, or if the scopes don't find anything, my advice would be to ask your doctors for either the pill cam (where you swallow a small pill-sized camera that takes pictures of the entirety of your small intestine but cannot take biopsies), or MRE (MRI-enterography, or specifically an MRI of your intestines with contrast). Those two are probably the best tests for looking at your small intestine specifically. There is also something called double balloon endoscopy, which is simiilar to an upper endoscopy but it goes farther in and can see more of the small intestine, plus it can take biopsies. That test isn't very common though so they usually need a specific reason to do that one.
 
Oh okay, I will first ask for a MRI, because I don't think they just give pill cams here in Holland.
I do think that i have crohns, but i'm so scared that they wont find it. i allready had 2 colonoscopies and ultrasounds..

Thank you, you give great information!
 
hi first time here.

I am currently undiagnosed I go for colonoscopy on Wednesday.

took one trip to doctor and with what I explained. with in 1min he said I had crohns. just have to wait.

Symptoms are major stomach pains when I go.
have noticed orange/yellowy puss when wipping and also white stringy clumps stuff In the toilet.
One other symptom I get is lower back aches and I mean aches after I guess ive had a flare up.

I have in the past noticed clumps of red in my stool but just thought it was undigested food and I don't get much black in the stool but do get tiny bits of black.

The other most annoying symptom I have is a itchy anus. gets to u when in public and all u want to do is itch and itch and itch.

my symptoms are not all the time. they may last 3-4 days and then clear up.
doc has put me a predisolne for 3 days which is helping.

this has happened before but didn't think much of it.
my last problem had me almost vomiting from the pain while passing both watery and formed stools.

Cheers Steve
 
Hey. Got a couple of questions. Don't wanna create a full topic on it, so just thought I'd ask our undiagnosed family!

1) Do any of you suspected IBDers get a dull ache in your kidneys? Noticed this started yesterday on and off. Seriously, I feel like I'm falling apart (/dying), what next?!

2) My doctor did say come back if things worsen. The pain has become more frequent and intense; not sure if that's the iron or b12 pills or this undiagnosed condition.

Sometimes the pain is to the point where I feel like I'm either going to black out or throw up. Weirdly when I get it, my mouth like...over produces saliva and it's a really sour taste. Idk if that's some bodily acidic reaction to pain.

Oh, the question. Should I go back or wait until my ultrasound. Either way, I'm getting bored of waiting lol.

Thanks
 
Hey. Got a couple of questions. Don't wanna create a full topic on it, so just thought I'd ask our undiagnosed family!

1) Do any of you suspected IBDers get a dull ache in your kidneys? Noticed this started yesterday on and off. Seriously, I feel like I'm falling apart (/dying), what next?!

2) My doctor did say come back if things worsen. The pain has become more frequent and intense; not sure if that's the iron or b12 pills or this undiagnosed condition.

Sometimes the pain is to the point where I feel like I'm either going to black out or throw up. Weirdly when I get it, my mouth like...over produces saliva and it's a really sour taste. Idk if that's some bodily acidic reaction to pain.

Oh, the question. Should I go back or wait until my ultrasound. Either way, I'm getting bored of waiting lol.

Thanks

Hey Lewis,
A while back I had pain in my abdomen, but I also had pain right at the bottom of my ribcage both sides, felt like it was in my back. Called a nurse as it was really aching, and we decided to wait (it was a long weekend). Anyway, I drank some water in the meantime (my idea, not hers) and it helped make the pain there go away. I still had my regular pain, but that pain disappeared. Perhaps you could try drinking one to two tall glasses of WATER and see if it helps. If it doesn't, please get it checked out.
 
So I went to see a new Rheumy at a new Hospital.

He didn't think he could diagnose me but was willing to try a few things, so I had x-rays and bloods then went home.

5pm he calls me and instructs me to return to the Hospitals Emergency Assessment Unit because I was dangerously low in haemoglobin (6 when should be 12-15) for a blood transfusion. I was told my heart was in danger.

I attended and had two units of blood over 6 hours and was admitted.

The hypothesis was this had been caused by the Naproxen.

Blood tests after the transfusions showed low iron, ferretin and B12.

Had an upper endoscopy (my god it was so much better with the sedation than the one I had without) which showed mild stomach irritation but no bleed.

This and the blood tests didn't satisfy them it was the Naproxen.

Discharge once stable and an emergency colonoscopy out patient appointment was mentioned, but this has been put on the back burner for now.

Instead I will go back in 4 weeks to follow up, having done two sets of bloods in that time. See if things are better or not in which case they will seek out the cause again.

All in all I was in for 3 nights one of them on a medical ward. The Nurse there told me although she knew of people walking round with a haemoglobin of 3 a level of 6 could have killed me.

I had been feeling very bad but assumed it was my worst flare of fatigue yet following what was a stressful 6 weeks caring for my mother after she broke her wrist around Xmas and my health never picked up. Few weeks ago had a virus figured I was still low from that. I didn't realise the paleness, shortness of breath, heart palpitations the past few days and the crushing painful fatigue could be anything other than a bad flare! I had started to realise the enormity of how bad I was feeling but anaemia never crossed my mind.

I have double Omprezole for a month to heal my stomach and i've had to stop the Naproxen :( The best painkiller I have ever had so will have to see GP next week to try and get something else. But I have tried so much already with either little or no success. :(

I can use my codiene 30/500 as a stop gap but that's ineffective on my hips and not effective enough on my shoulder. But I cannot take the risk, with even a tiny dose of Naproxen and lots of Omprezole.

Happily I do feel loads better after the transfusions, better than I have done in ages.

Just trying not to worry about the immediate future/pain coming back.

Glad to be home too!
 
Lewis, that pain in your kidney area, coupled with you describing pain so bad you might black out or puke, sounds like kidney stones to me (kidney stones are unfortunately not uncommon with IBD). I haven't had them myself (knock on wood!) but my husband had them a couple years ago, and when his acted up, he would puke from the pain. I don't recall him ever passing out, but he definitely vomited due to the pain. I would get that checked out ASAP - if you can get the stones diagnosed before they get too big, you may be able to flush them out yourself (with drinking lots of fluid plus taking meds to flush your system). If they get too big though, then you would likely need surgery - my husband had to have the kidney stone surgery and it was not a pleasant experience for him. They stick a tiny scope up your pee hole, blast the stone with a laser, then you still have to pass the bits of it which still hurts like crazy. So go get that checked out right away! They should be able to tell by x-ray and/or CT scan if you have stones. Good luck!

Star, holy cow! Quite an eventful time you've had! Well, it sounds like your new doctor is proactive and taking things seriously at any rate which is a good change from the care you've had in the past, and I'm glad to hear the infusion has helped you feel better. It's scary to think what could have happened if you hadn't seen this new doctor! Wow, I hope things are still improved at your follow-up and that your joints hold up okay without the Naproxen.
 
Lewis, that pain in your kidney area, coupled with you describing pain so bad you might black out or puke, sounds like kidney stones to me (kidney stones are unfortunately not uncommon with IBD). I haven't had them myself (knock on wood!) but my husband had them a couple years ago, and when his acted up, he would puke from the pain. I don't recall him ever passing out, but he definitely vomited due to the pain. I would get that checked out ASAP - if you can get the stones diagnosed before they get too big, you may be able to flush them out yourself (with drinking lots of fluid plus taking meds to flush your system). If they get too big though, then you would likely need surgery - my husband had to have the kidney stone surgery and it was not a pleasant experience for him. They stick a tiny scope up your pee hole, blast the stone with a laser, then you still have to pass the bits of it which still hurts like crazy. So go get that checked out right away! They should be able to tell by x-ray and/or CT scan if you have stones. Good luck!
.

My Dad just had kidney stones blasted. About 12 years ago I took him to the hospital and he was in intense pain. Back in New Zealand, they have a bus with the laser that goes around the country and it wasn't in town at the time. In the meantime, someone told him about honey cider vinegar (known as Honeygar). He started taking a spoon of that with water daily or twice daily and his pain went away (it probably shrank the stones). I suspect he stopped doing his daily regime and that's why his recent flare up with stones has happened. The passing doesn't sound like much fun either. But we're talking a big time lapse between the first bout and the actual blasting. It was pretty good remission for stones for him :)
 
Hi everybody! I am SO SORRY I have been MIA for the last several weeks. The school year here is coming to an end and we have been doing exams (I had my last one today), so I've been really busy with that as well as packing this last week and doing some shopping before I go home on Tuesday early morning! I am sooooo excited to go home already :D

I'm behind on what's been going on with you guys, I hope everything's been good. I'll take a minute later to read over the posts I missed.

My GI issues have calmed down a bit. I'm still not back to normal, but it is MUCH, much better than how it was a few weeks ago. I'm still getting blood, mucus, and pain, but it's more spread out and doesn't leave me feeling awful the entire day. I'm also not having as big of a reaction so soon after eating. I still feel better when I don't eat (obviously), but it's not as bad as it has been because then it was pretty much guaranteed BM, pain, etc. anytime I ate and very soon after.

I'm still going to go to my GP when I get home because I need to regardless for other stuff, but I'm not going to press the GI issue if it continues to get better and doesn't get worse. If I'm still really bad when I get home then I will definitely want to investigate, but if I'm feeling alright then I would prefer to just let it be for now. My main reason is because I don't want to go through the hassle of testing and doctor appointments only to still be left without an answer in the case that the flare has died down and there would be nothing for them to find and no evidence with which to make a diagnosis. If it is Crohn's, then it will eventually flare again and there may be more damage/active inflammation that they can see through imaging. But I'll just see how I feel when I get home, because right now I'm not as bad as before but also still flaring.

My lymph node under my jaw on the right side is swollen yet again! It is uncomfortable because it is tender and painful if I put pressure on it. I've been getting headaches often. My back is pretty bad lately, worse than it was feeling a few weeks ago; same with my hips. I'm going to have my GP look into that (back and hips) because it's getting ridiculous. The headaches are probably nothing, stress or fatigue or whatever! The lymph nodes I have no idea - obviously, though, I'm well aware that one reason they get inflamed is due to autoimmune diseases. *Sigh* I am pretty curious to see if I have any inflammatory markers.

Anyway, hope you all are enjoying summer and are feeling well! :)
 
Had a great first appt with my new GI today! Got my endoscopy and colonoscopy booked for July 4th- 11:30am. One more month before a diagnosis! :)

I do hope you get a diagnosis, and some treatment which helps, once you've had your scopes.

I just wanted to say though, IBD can be tough to diagnose, and sometimes repeat tests are needed etc.

Also if it it Crohns, it can occur over the whole digestive tract so neither scope can see everything. The good news is there are other tests that can cover the entire small bowel and so on as well as general body CT/MRI.

Please let us know how you get on and I will keep my fingers crossed for a diagnosis for you.

I found planning a nice food treat for after my scopes helped me bear the prep :hug:
 
Am I the only one where farting hurts? If I fart it burns and stings inside of my colon..
Does anyone else has this?

Not quite for me as I'm not sure my colon is affected, but the wind pain as it's on the way through my system can be quite painful -like I'm being stabbed. Quite debilitating and almost 'screamable'.
 
Am I the only one where farting hurts? If I fart it burns and stings inside of my colon..
Does anyone else has this?

Yes! Though it's not so much farting but it's as the wind passes through a certain part it hurts like hell! Thankfully it's not all the time :).
 
Hey guys, i know not many of you newbies to this thread know my story as i arrived back in march time (i think) but Cat knows and a couple of you others have picked up some bits.

So report came in from the consultant and spoke to GP friday - biopsies from flex sig showed chronic long term inflammation and irritation but no cause. So on melazine suppositories to try and bring inflammation down, but other than that, i have no help what so ever and now they've completely given up diagnostic wise. They may as well just shoot me now, i can't take it any longer. Its just rediculious as i cant even work my full time job, its stupidly bad. I really don't know what to do anymore. I just haven't got a clue, nothing helps. I cant walk some days the pain is so bad, i'm on the toilet 20+ times a day, joint pain now too, feel like my insides are being torn out ect, ect... its just too difficult to cope with anymore.
 
Need some quick advice. Supposed to be running a 10K in about an hour and I'm in really bad pain. I tried everything; D tablets, paracetamol, Rennies and had a healthy breakfast. Still in pain...

To top it off, I got no sleep last night and I'm fatigued as it is! :(

I'd be so disappointed to have to drop out, but it's looking that way...should I just power through it?
 
I, too, get pains with flatulence. Like the others said, I wouldn't say it's so much the skin outside that it hurts, but just on the inside of me. It's painful in the same way as stool is painful in my colon and these days it also gives me the same sensation when it's ready to come out most of the time (like, I can't tell if I need to fart or to poop, and they are equally as painful and uncomfortable).

Rosanna, sorry to hear that they've given up on you; although to me it almost sounds like "good new" diagnostic wise - chronic inflammation *should* be sufficient to give you a diagnosis. Apparently not!? Here is what confuses me about their response to the inflammation: inflammation is used in order to diagnose IBD, meaning that the cause of the symptoms is found to be IBD based on the presence of inflammation - ie quite the opposite of finding a cause for the inflammation. IBD causes inflammation, so inflammation is used to determine the presence of IBD. Finding inflammation and wondering what the cause is seems quite redundant. I really don't know what to tell you! Did they say what about the inflammation they found made it impossible to find the cause? For example, that the pattern of inflammation didn't clearly match any expected patterns for possible conditions, or that the biopsies came back not indicative of anything?

Lewis, your 10k has clearly already taken place, but I would have said that the obvious answer is to not go. What is the point of running a 10k if you're in no condition to do so? I mean, assuming the reason you signed up for the 10k in the first place is to have fun and improve fitness, attempting that while ill is not going to accomplish either of those things! Lol. There will be other 10k's! Depending on how you felt, though, I would have suggested that maybe you could walk it. So, in the end, what did you decide to do?
I have a 10k on 4th of July but I haven't been able to train for it at all while here in Russia! I'll have a few weeks at home to get ready :D
 
So an update on me...
Last night ended up being miserable! Constantly waking up for the bathroom and half the time it would be right after I had just gotten back to bed and laid down. Very frustrating! I was telling my mom over the phone that I'm worried about the trip back home tomorrow night (technically Tuesday early morning). I might not have aisle seats as I didn't get to choose beforehand, so I'll have to check at the check-in counter if it's an option. My mom suggested telling them I have a bowel condition and that I need to have an aisle seat, but I'm not sure how to go about doing that and what to do. Anyone have any advice? I'll be traveling for something like 27-30 hours altogether. I know that the thing which will make the most difference to my comfort is eating - or, rather, the lack of it. I'll try my best to NOT eat more than what's absolutely necessary, but I'm not sure how that will go. I'll start eating lightly at dinner tonight and then tomorrow eat as little as possible; then I should be feeling pretty normal (albeit hungry) by the time I go to the airport, and I'll continue to eat lightly throughout the trip. I'd rather be uncomfortable due to hunger rather than due to GI problems! I'll put my Adderall to good use for a couple days and it should make things much more bearable.
 
Thanks happyballerina, I think I needed someone other than my parents to tell me it wasn't a good idea. Everyone pretty much said I shouldn't do it and it took me until before we were about to set off that I realised I couldn't. The fear was mainly of the pain exacerbating during the run or needing to go to the loo desperately. Luckily me and my mum both raised the money together, so the charity we chose will still get the same amount regardless.

I just hope to soon get diagnosed, get fit/healthy and redeem myself!

It's a shame you didn't have one of those cards that state you have a bowel condition and that you need immediate access to toilet facilities. I don't see why they wouldn't understand if you just asked at the check-in counter though, I'm sure they'd much rather you made it to the bathroom! Perhaps they could do a swap.
 
Rosanna I would ask to see a new GI at a new Hospital. You have the right to a second opinion. I am horrified they found inflammation but are pretty much doing nothing. There might be a wait but at least there would be hope.

Don't know if you saw my latest post but I pushed to see a new Rheumy somewhere else and his basic tests caught a life threatening case of anaemia. My GP and local Hospital had three chances this year to spot it if they had bothered to do blood (one as recently as last week) but they did not and I ended up in an emergency situation.
 
Oh that sucks Rose, like stargirl said, I would go for a new GI and a different hospital. It is not normal that you have inflammation marks, but they still don't want to do anything for you!!!!

Does anyone know why the farting hurts? Because it is like one part of my colon, does that mean that maybe there is an inflammation? Or is it ibs?
 
Oh that sucks Rose, like stargirl said, I would go for a new GI and a different hospital. It is not normal that you have inflammation marks, but they still don't want to do anything for you!!!!

Does anyone know why the farting hurts? Because it is like one part of my colon, does that mean that maybe there is an inflammation? Or is it ibs?

Hi Leanne,
I'm sure the cases for each of us is a bit different, but when I went for a CT scan when I was almost better from my bout of illness, they found inflammation in my upper small bowel, intussuception in the lower part of my small bowel and thickening in my mid small bowel (not sure which part of that). I suspect the wind pain I had all over is caused by a localized problem that makes it "GENERALLY" intolerable. They didn't find issue with my colon, except I was backed up a bit.
 
Thanks happyballerina, I think I needed someone other than my parents to tell me it wasn't a good idea. Everyone pretty much said I shouldn't do it and it took me until before we were about to set off that I realised I couldn't. The fear was mainly of the pain exacerbating during the run or needing to go to the loo desperately. Luckily me and my mum both raised the money together, so the charity we chose will still get the same amount regardless.

I just hope to soon get diagnosed, get fit/healthy and redeem myself!

It's a shame you didn't have one of those cards that state you have a bowel condition and that you need immediate access to toilet facilities. I don't see why they wouldn't understand if you just asked at the check-in counter though, I'm sure they'd much rather you made it to the bathroom! Perhaps they could do a swap.

I would have suggested you don't do the run, Lewis. But I just woke up. I'm glad you didn't go and while disappointed, you wouldn't want to be in worse physical condition. Lack of sleep, and potential dehydration from a run can do bad things to the brain.
 
Hey guys, i know not many of you newbies to this thread know my story as i arrived back in march time (i think) but Cat knows and a couple of you others have picked up some bits.

So report came in from the consultant and spoke to GP friday - biopsies from flex sig showed chronic long term inflammation and irritation but no cause. So on melazine suppositories to try and bring inflammation down, but other than that, i have no help what so ever and now they've completely given up diagnostic wise. They may as well just shoot me now, i can't take it any longer. Its just rediculious as i cant even work my full time job, its stupidly bad. I really don't know what to do anymore. I just haven't got a clue, nothing helps. I cant walk some days the pain is so bad, i'm on the toilet 20+ times a day, joint pain now too, feel like my insides are being torn out ect, ect... its just too difficult to cope with anymore.

Sometimes the specialists need help. I know this is going to sound moronic as we generally do this anyway, but look for the cause of your symptoms, present your findings and ask what the specialist thinks. If they think that's it, perhaps it is and perhaps you get your diagnosis and treatment. The reason I say that is years ago I was going to see a neurologist to get a new medication to help stabilize me with a taper and he was appreciative of the information I brought with me and together we sat and worked out the best approach. Some specialists appreciate that you're taking an active interest in your own health. That's all I'm saying. Some aren't. It's hard to know where these guys you're dealing with fall on the ego spectrum.

With your pain, while that might be arthritic in nature, it's probably also a result of lack of particular vitamins and minerals. If you're on the toilet a lot, you're losing essential minerals and you're probably not replacing them fast enough. When I get my scope done, I'll start back on the turmeric and black pepper and let you know if I find that helpful with inflammation. There are indications that it is a good thing, but it would probably depend on your sensitivities too.

What foods do you KNOW to avoid? Or is there nothing in particular?
 
I have limited internet access right now and for the next few days (and when I do have access it's not a great connection). Just wanted to say... :)

Lewis, that's exactly what I was thinking! But honestly I don't think they would refuse to accommodate me just because of that...there might even be some rules against it, I don't know. What if someone lost their card, for example? I have three flights and the longest is from NY to Atlanta, which is the most important one for me to have an aisle seat. Hopefully I can arrange for an aisle seat and if not then I guess I'll just have to deal with it as best as possible. I'm going to tell them I have Crohn's Disease and make both mine and the airport staff's life easier.

I was thinking of taking some laxatives tonight just to really clear myself out of everything, but I decided against it - really only because tomorrow morning I have my last ballet class here and I want it to be a good one. Also because I can't handle another night of constantly running to the bathroom (although I've not needed laxatives to make that happen, so I might have another fun night regardless). Haha. Since the evening I've been feeling really yucky, emphasized by an awful headache that finally went away after taking a double dose of painkillers. Btw the reason I was thinking of laxatives to clear myself out is because I feel like clearing my GI tract entirely will make for a very in eventful flight, and would be most comfortable. Albeit visiting the bathroom way too often, it's not been particularly loose lately. When I have had a full BM (and not just mucus or too little to "count"), it's been long and thin. I think it has, anyway, compared to what I've ever seen before. This is unsettling as I realize this could indicate narrowing somewhere (at least I think it could?) but what can I do!
 
I would have suggested you don't do the run, Lewis. But I just woke up. I'm glad you didn't go and while disappointed, you wouldn't want to be in worse physical condition. Lack of sleep, and potential dehydration from a run can do bad things to the brain.

Hello I'm catching up on this now, Lewis I would echo what eternal howl has said. I'm so glad you didn't do it because you would prob be so ill if u had! Well done for raising money for charity you must feel good about that
 
Thanks Suzi :)

Quick rant...

I'm getting to inpatient now! I want to be able to start looking for a job and to go out without being constantly aware of my discomfort. I also want a name to put to the problem, it sucks not being able to say what you have to people when you're in pain or rushing to the bathroom. They just think I'm complaining about nothing...

It's only a week until my ultrasound, but it feels like a lifetime away...and there's no guarantee I get any answers. :/
 
Thanks Suzi :)

Quick rant...

I'm getting to inpatient now! I want to be able to start looking for a job and to go out without being constantly aware of my discomfort. I also want a name to put to the problem, it sucks not being able to say what you have to people when you're in pain or rushing to the bathroom. They just think I'm complaining about nothing...

It's only a week until my ultrasound, but it feels like a lifetime away...and there's no guarantee I get any answers. :/

The waiting sucks, I know. I'm still waiting for approval to have the pill cam procedure. Luckily for me, whatever is going on doesn't seem to cause me diarrhea much - in fact rarely. I just get crippling pain when it happens and I pretty much 'walk' for a living. Driving rarely. Today I'll be walking for about 6 hours and bathrooms aren't handy. It hasn't happened in about a month, which surprises me. I took turmeric and pepper for a few days and wondering if that helped a bit. I stopped because I want my scope to show up the problem, not hide it.
 
Rosanna, sorry to hear that they've given up on you; although to me it almost sounds like "good new" diagnostic wise - chronic inflammation *should* be sufficient to give you a diagnosis. Apparently not!? Here is what confuses me about their response to the inflammation: inflammation is used in order to diagnose IBD, meaning that the cause of the symptoms is found to be IBD based on the presence of inflammation - ie quite the opposite of finding a cause for the inflammation. IBD causes inflammation, so inflammation is used to determine the presence of IBD. Finding inflammation and wondering what the cause is seems quite redundant. I really don't know what to tell you! Did they say what about the inflammation they found made it impossible to find the cause? For example, that the pattern of inflammation didn't clearly match any expected patterns for possible conditions, or that the biopsies came back not indicative of anything?

I don't understand their logic to it! They have been searching for something for 2 years and then they find 'Chronic LONG TERM inflammation and irritation' and they ignore it?!!! I do not get it in the slightest! They just said that the chronic inflammation didn't show a cause. So basically in their terms, there is masses of inflammation their but because the biopsies didn't indicate a cause/condition it's nothing to worry about! Except for the fact its ruining my blinking life?! and is nearly costing me my job!!!! After i had the biopsies done he told me that there was inflammation in what he saw that could be colitis but only the biopsies coming back with that dx would confirm. So basically, the biopsies didn't come back with colitis, so they've left me helpless.
 
Sometimes the specialists need help. I know this is going to sound moronic as we generally do this anyway, but look for the cause of your symptoms, present your findings and ask what the specialist thinks. If they think that's it, perhaps it is and perhaps you get your diagnosis and treatment. The reason I say that is years ago I was going to see a neurologist to get a new medication to help stabilize me with a taper and he was appreciative of the information I brought with me and together we sat and worked out the best approach. Some specialists appreciate that you're taking an active interest in your own health. That's all I'm saying. Some aren't. It's hard to know where these guys you're dealing with fall on the ego spectrum.

With your pain, while that might be arthritic in nature, it's probably also a result of lack of particular vitamins and minerals. If you're on the toilet a lot, you're losing essential minerals and you're probably not replacing them fast enough. When I get my scope done, I'll start back on the turmeric and black pepper and let you know if I find that helpful with inflammation. There are indications that it is a good thing, but it would probably depend on your sensitivities too.

What foods do you KNOW to avoid? Or is there nothing in particular?

I have tried all of that, said to him exactly what i think it is (colitis) and have explained why, his latest findings would point to that, but because the biopsies came back not implying any condition he's just instantly gone 'there's nothing wrong' there is inflammation there but it's not doing any harm to you. Oh really?!!! No harm, try i can't live my life. You tell me to eat a gluten and lactose free diet because its so high in fibre and good for you. What does he want to do, kill me?! If i eat any high fibre diet i can't get off the toilet for the next week and the pain level is just rediculious!! I get way too much pain as it is and they wont help me with the joint pain or anything, they assume the codeine (that's doing nothing) is managing it, even though i've said it's not hundreds of times.
As for foods to avoid, EVERYTHING is the answer. Anything i eat makes me horrendously poorly and it just goes straight through me! It's horrible.

As for someone else saying second opinion, this is my second GI, the second opinion. The first did not much more than a flex sig (too painful) and ruled out colitis from that. I think that's where things may have gone wrong. He instantly said its not that because lower part was clear and now anyone who looks at my file seems to assume i've had a full colonoscopy and that the entire thing was clear, in which i've told them it's not the case as they really didn't do much more than a flex sig at all! It makes me so angry being shrugged off by all these different doctors saying its just IBS or in my head. I go to the toilet 20+ times daily, the pain is excruciating, the blood and mucus that comes from my bowel is horrendous and massive amounts. I can hardly walk in pain some days, let alone move! I really have hit a dead end and i don't know where to go next. I could try for a 3rd opinion, however the dilemma to that is the consultants in my area all work in one system, its the 'Worcestershire acute trust' so i will most likely end up with the same one i've seen before as they just go round the hospitals anywhere near me. I'd have to drive 2 hours away for a different one, and they wouldn't refer me to them as i'm 'supposed' to stick within the Worcestershire trust. It's driving me insane. I don't know what to do?!
 
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