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ellazmeanie
my name is paul or ellazmeanie im 47 began with the worst headaches I ever experienced 3 weeks back n forth to docs n dentist taking pain meds then one morning they seemed to have gone relief at last so I thought suddenly I felt a click in my lower right back n a rush of cold air in a flat skinny abdomen collapsed passed out thinking I was dying came round and noticed that my tummy felt very uncomfortable to the point just breathing in n out was n effort looked at belly which had gone from flat to like I was 9 months pregnant headaches turned out to be cluster headaches docs diagnosed me with mental health n ibs later emphysema vertigo n temporal artiries years of ibs meds make no difference now suspect it could all be linked n maybe sibo feel sick most the time heads on fire giddy nauseous n churning odd shunts dizziness asked repeatedly for sibo breath test
 

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ellazmeanie
forgot to mention I have severe pain most days now temple eye neck back of head stiffness a little numb in my arms especially the right side and the distention feels a bit worse
 

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ellazmeanie
have any of you heard of sibo severe intestinal bacterial obstruction something gps refuse to recognise and is easy to diagnose with a simple breath test easy to treat with a course of antibiotics called xifaxan
 

Jennifer

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Hi ellazmeanie and welcome to the forum! :D Sorry for the late reply.

Are you seeing a gastroenterologist (GI) specialist? What imaging tests have you had done? Have you had a colonoscopy and upper endoscopy done? It sounds like you might be dealing with at least a partial obstruction based off of the symptoms you mentioned here so if you haven't had any tests like a CT scan, MRI or even a regular x-ray to show an obstruction then I'd do that right away. Either a CT or a normal x-ray can be done at the hospital so you wouldn't need to wait for your regular doctor to order it.

Keep us posted.
 

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ellazmeanie
in 93 had a sigmoidscope the doc then hit a blockage and couldnt go any further and decided without explanation that it was ibs had test after test since ultrasound endoscopy xray endoscopy found I had scarring from ulcers diverticular disease had helicobacter they put me on all kinds of useless ibs meds that never work having another ultrasound next week and seeing gi in december have alot of new symptoms plus copd/emphysema
 

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ellazmeanie
always thought it could of been an unravelling of my intestines as I feel like a beached whale or a balloon blown up to bursting point docs are stuck with the ibs tag though which I now think doesn't exist
 

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ellazmeanie
I see mention of prednisone here oddly I was put on that very recently for suspected temporal arteries didnt know it was a treatment for stomach problems
 

Jennifer

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Prednisone is a treatment for inflammation so it's commonly prescribed to those with IBD who have a lot of inflammation going on in their intestines. It's a short term treatment but generally people need to be put on a more permanent treatment/maintenance medication.

When you had your scopes done were any biopsies taken?
 

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ellazmeanie
yes way back discovered the scarring the diverticular disease and that I had helicobacter tried alot of stuff since fybogel mebervine omaprazole buscopan a few other ibs treatments nothing helps symptoms are constant another thing that I have is that tests also show high white blood counts and raised esr
 

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ellazmeanie
awake at 4am feel quite rotten pain behind eyes and guts feel wretched notice a mild kind of gripey colicky pain in lower abdomen also in groin whole abdomen and sides feel like they will split open nauseous and this feeling of stale air giddy
 

Jennifer

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If the pain is too extreme and or if you start vomiting then go to the hospital right away. It really does sound like you're dealing with a blockage and I don't think an ultrasound is the best test for the job. The hospital could rule out an obstruction with an x-ray or if you wanted to see more then you could have a CT scan done at the hospital. Keep us posted.
 

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ellazmeanie
temple is on fire again can a blockage stay hidden for 20 years or rather go undiagnosed the first sigmoid in 93 found a blockage but apart from telling me it was ibs they never checked for anything else moved around a lot since been through several docs all stuck on the ibs tag
 
First thing you need to do is find a primary that takes you and what you are going through seriously, IBS label or not. If your going to see a GI they will right off the bat anyways, and will want you to keep seeing them until they know for sure what it is and have a fixed line of treatment that works.

Your primary should have been taking this seriously all along, IBS label or not, so I'd start looking for one that does even though you are going to see a GI finally.
 

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ellazmeanie
seeing gi in December but not first time I've been doc I'm under now has added the first sigmoid test that found the blockage to my newer notes also so will highlight that to gi
 
seeing gi in December but not first time I've been doc I'm under now has added the first sigmoid test that found the blockage to my newer notes also so will highlight that to gi
Just saying my old primary took all my symptoms very seriously right off the bat and went about trying to treat them aggressively until she found a line of attack that worked even though I didn't have the coverage needed to see a Urologist or GI back then, or get tested ( I had GPA ), I do now so I finally am seeing both.

Lost my ride so I need to find a new primary that I can get to and is as good as she was, first one I tried has already stuck out, she was a pure idiot, and from reading around a lot of others had a hard time finding that right primary. My old primary would have said severe IBS/crohns right off the bat in your case and been aggressive about treating it, which it doesn't sound like yours was. Its amazing to me how so many doctors out there while obviously highly educated are also complete idiots.

Your primary is responsible for coordinating all your treatment and is your first line of defense, finding one that listens to you and takes what is going on with you seriously is very important. I was never big on doctors and got lucky with my first primary, on my hunt for a new one, how I miss her. :(
 

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ellazmeanie
weird thing was bout 2 months before it all developed saw a gp she looked at me and was like she had a premonition or something and warned me to take care of my stomach as I was going to have problems I adked what she meant she said she saw it in my eyes went back at time of collapse and she had left
 
weird thing was bout 2 months before it all developed saw a gp she looked at me and was like she had a premonition or something and warned me to take care of my stomach as I was going to have problems I adked what she meant she said she saw it in my eyes went back at time of collapse and she had left
Now that primary sounds like she was a good one, my old primary used to be able to tell how I was really feeling on any given day by looking at my eyes. That ability means she cares, sorry to hear she had left the practice, sounds like she was a good one.

Also sounds like you go to doctors as a hit or miss thing, you really need to find one that, like I said, listens to you and takes anything going on with you seriously, and stick with that one from there out, nothing wrong with a GP, my sister actually sees a NP as her primary and swears by her, your primary is just the one that coordinates all your care, so its very important to find a good one that you are comfortable with.
 

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ellazmeanie
moved where im at now few months ago and the practice im at the first doc they assigned to me got on well with from the off go took everything seriously she left bout 2 months after found she was on a years training doc I have now seems an idiot so will try some different docs as its a big practice want to get to the gi appointment though which isnt so far off now and have neurology next week ultrasound following week but may just ask for the ct n xray
 

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ellazmeanie
new symptom tonight a odd feeling in my privates not immense pain but discomfort all the same think im gonna call docs in morning go in as urgent feel wrecked and grouchy as hell to the point its effecting a friendship
 
new symptom tonight a odd feeling in my privates not immense pain but discomfort all the same think im gonna call docs in morning go in as urgent feel wrecked and grouchy as hell to the point its effecting a friendship
Sounds like a UT infection, which for whatever reason we are prone to, they also go by the wayside mostly because a lot of the antibiotics we take kill them off anyways. I am even more prone to them as I have CPPS as well, you'd be amazed at just how many there are and the different areas they effect, I think I get an extra Cipro dosing two to three times a year because of them.

Thing that sucks is, the more we use any type of antibiotic, the less effective they become~~
 

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ellazmeanie
dont think its a uti had one last christmas that laid me in bed a month feel a little easier this morning phoned gp and gonna get referred for some more tests xray n ct scan have a bunch of other appointments aswell so will see what they come up with
 

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ellazmeanie
have a bit of pain along lower abdomen n to the left kinda colicky a lil acidy unusual as dont usually get pain more the discomfort from the distention
 

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ellazmeanie
rheumatologists seems to think the joint aches are posture related have invested in a gamer chair as my sitting arrangements in my studio bungalow are not so great it came today so will see how that goes the headaches and temple stuff im getting checked out thursday by nuero rheumatologist doesnt think its temporal artiries though which is a weight off and bowel issues seeing gi in december a little confused reading on here bout the joint aches related to ibd but after last nights being sick dont feel so bad so far today
 

Jennifer

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Hope the appointment goes well and you get some imaging tests now rather than having to wait and see the GI in December. That's a long time to wait when you're having blockage type symptoms and have a history of blockages. Any chance you can get on that GI's cancellation list? People often cancel appointments so they might be able to squeeze you in sooner (hopefully, I know things are different in the UK than the US).
 

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ellazmeanie
will ask neurology on thursday if I can get xray n ct scan n prob phone gi n see if they can speed things up have the ultrasound next week also being referred to physiotherapy to
 

Jennifer

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I believe only your GI or GP will order a CT scan or x-ray of your abdomen. The hospital will do it as well (if you went in for extreme abdominal pain etc).
 

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ellazmeanie
ok will phone gp but ask to see a different doc a female i think as guy i was switched to after my previous gp left is a bit of a jerk
 
have any of you heard of sibo severe intestinal bacterial obstruction something gps refuse to recognise and is easy to diagnose with a simple breath test easy to treat with a course of antibiotics called xifaxan
SIBO is Small Intestine Bacterial Overgrowth - where bacteria that's meant to stay in your colon gets back up into your small bowel. In my months of waiting for the NHS to come up with some answers I scoured every corner of the internet for anything I could find on GI disorders and I'd convinced myself it was SIBO I was suffering from. I'd ruled out Crohns and UC as the symptoms didn't seem to fit, so I was quite surprised when the GI consultant eventually told me Crohns.

Pain in your lower abdomen and genitals could be prostatitis. I may or may not have had this following surgery; it wasn't entirely clear (but 4 weeks of Cipro really made me ache). It can be an infection, but also can be a chronic inflammation with no obvious cause much like Crohns, but I think less serious.
 

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ellazmeanie
here in uk i get the feeling gps have heard of no other bowel condition except ibs which to me is a label and not a condition 1st day without a rolled cig
 

Jennifer

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Good for you! :) Keep track of your symptoms and see if they get better or worse when you quit. For CD people tend to start feeling better. With UC and even Crohn's Colitis, people tend to go into a flareup. So if your symptoms get worse then your may want to consider a nicotine substitute.
 

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ellazmeanie
back from nuero todays appointment n tuesdays rhuemo have both been a weight off as i had the temporal arteries ruled out n today got taken alot more seriously than in the past they regognised i have stuff that seems related from the stomach issues headaches which she thinks i have 3 types balance issues sweating n tremor which she thinks is my cerebellum past alcohol n cannabis use but just the fact that she understood n took things seriously has been helpful have to have more tests such as mri n stuff
 

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ellazmeanie
nuero is going to coordinate with my gp to get blood tests at my doctors have my ultrasound tomorrow and gastro at end of december so hopefully get some answers at long last
 
SIBO is Small Intestine Bacterial Overgrowth - where bacteria that's meant to stay in your colon gets back up into your small bowel. In my months of waiting for the NHS to come up with some answers I scoured every corner of the internet for anything I could find on GI disorders and I'd convinced myself it was SIBO I was suffering from. I'd ruled out Crohns and UC as the symptoms didn't seem to fit, so I was quite surprised when the GI consultant eventually told me Crohns.

Pain in your lower abdomen and genitals could be prostatitis. I may or may not have had this following surgery; it wasn't entirely clear (but 4 weeks of Cipro really made me ache). It can be an infection, but also can be a chronic inflammation with no obvious cause much like Crohns, but I think less serious.

You do realize ellaz is a female right ? As in no prostate, so it can't be CPPS starting ( I have CPPS ) either viral or the unexplained kind. I do wonder if somehow IBD's cross relate somehow and cause CPPS, which is the unexplained kind.

I don't know if the paraurethral gland can cause the same issues in females as the prostrate can cause in males though, not my parts, so I never learned about them. :redface:
 
Disregard what I said then, LOL. Looked at the name and assumed, then you added the pic as your avatar and just furthered the assumption.
 

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ellazmeanie
just a thought but its possible to rot inside and have rotten fecal matter jammed in our guts bad breath body odour headaches fatigue think a over all rehaul of diet and a colon cleanse is in need
 

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ellazmeanie
quit smoking roll ups two days now been trying scd diet been back and forth to loo all day even in docs this morning explosive diarrhoea and blood on tissue and bowl still feel bloated like a beached whale
 

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ellazmeanie
hmms am I that negative compared to other sufferers that I get no response to anything got brushed off ouch uk for same reason feel indifferent for suffering from the same things
 
have any of you heard of sibo severe intestinal bacterial obstruction something gps refuse to recognise and is easy to diagnose with a simple breath test easy to treat with a course of antibiotics called xifaxan
SIBO is Small Intestine Bacterial Overgrowth - where bacteria that's meant to stay in your colon gets back up into your small bowel. In my months of waiting for the NHS to come up with some answers I scoured every corner of the internet for anything I could find on GI disorders and I'd convinced myself it was SIBO I was suffering from. I'd ruled out Crohns and UC as the symptoms didn't seem to fit, so I was quite surprised when the GI consultant eventually told me Crohns.
Some doctors do recognise SIBO. I'm also in the UK, and one of my gastroenterologists thought I might have it (in addition to my other health problems), but it turned out I didn't. They were trying to work out how I could eat so much and still be underweight, and SIBO was one of the few possibilities they could think of. They said they could get the test done, but I'd have had to have gone to another hospital for it, as it's not widely available. The other options they suggested for confirming whether I have it or not were trying the FODMAP diet or trying antibiotics. I didn't want to do the diet (I was far from convinced I even had SIBO anyway), and then other medical problems came up and they dropped the SIBO idea. I ended up having masses of antibiotics, both by IV and orally, for other problems, and since my stomach didn't improve after that, and it still wasn't any easier for me to gain weight, they concluded that I'd not had SIBO after all.

But, doctors here do recognise it, but the test isn't always that available. I'm not sure about this though:

Small Intestine Bacterial Overgrowth - where bacteria that's meant to stay in your colon gets back up into your small bowel.
I don't have a colon anymore, so when they thought I had SIBO, they can't have meant that bacteria was coming from my colon - that would have been physically impossible. So I guess you can have SIBO without the colon being involved at all.
 
hmms am I that negative compared to other sufferers that I get no response to anything got brushed off ouch uk for same reason feel indifferent for suffering from the same things
Do you mean doctors aren't helping you or recognising how sick you are? (Sorry if I've misunderstood you.) Unfortunately, that's very common. You'll find a lot of people here whose doctors have dismissed them as having Irritable Bowel Syndrome, and for some reason a lot of doctors also seem to believe that Irritable Bowel Syndrome is so minor that patients couldn't possibly need help with it.

If you are undiagnosed, check out this thread for the undiagnosed support group, if you haven't already: http://www.crohnsforum.com/showthread.php?t=13113 . There are lots of people here who are frustrated because their doctors can't or won't diagnose them, who will understand what you are going through and have suggestions about how to deal with dismissive doctors.

Regarding some of the other things you mention trying or wanting to try: I would avoid colon cleanses, and be wary of embarking on a radical diet like the SCD, especially if you don't know what is wrong with you. Don't over-complicate things, and beware of self-diagnosing based on things you read online. E.g. the SIBO diagnosis I mentioned above - the symptoms of that are very general and could be caused by a whole range of different diseases. Unfortunately, you need to go through the annoyingly slow process of medical tests. Keep on at your doctors (politely! even if they make you mad!), keep asking for tests, informing them of how you're doing and reminding them you need help. If you can find a good GP and a good consultant stick with them, so they can follow your case rather than switching between doctors (but if the first one you see is unhelpful, don't be afraid of asking for a second opinion).

But also don't get too caught up in trying to figure out what is wrong; make sure you have a life outside of illness and doctors' appointments, and if you feel like you're not getting anywhere, take a break from seeking a diagnosis - as long as your symptoms are stable and not deteriorating.

Good for you for quitting smoking though!
 

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ellazmeanie
20 years after passing out and waking up with abdominal distension that has been constant since and so uncomfortable I have alot of breathing discomfort the first gi I saw all that time ago performed a sigmoid hit a blockage and decided it must be ibs though no ibs treatment has ever made a difference moved around a bit over years seen quite a few different docs and specialists had diverticular disease cluster headache copd/emphysema and most recently cerebular issues added to my condition the symptoms mean I struggle to get about feel generally unwell all the time and dont have much of a life outdoors at all I do feel that with the internet and available info I have more understanding about whats wrong im due to see a gi in december have knowledge under my belt now abd dont feel that looking stuff up makes you feel worse or less informed then just trying to cope quietly
 

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ellazmeanie
its the constant bloating and a past diagnosis of helicobacter pyroli that make me think sibo as the two can be mixed up will push for the breath test at gi appointment just to rule it out
 

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ellazmeanie
I feel quite nauseous since I quit the roll ups not felt so great since the day of diarrhoea and blood the diarrhoea has calmed but still have alot of blood n urge to go more then once a day my guts feel stale n airy ticklely my sidez feel rigid n have to tense just to get a breath
 

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ellazmeanie
to be honest with the on going symptoms I cant possibly make things worse by eating better food stable symptoms ? you mean distention thats so bad I feel like im about to burst I wouldn't be back n forward to docs for 20 odd years if my symptoms were stable if im honest things feel alot worse in recent years whatever is inside my guts feels rancid n rotton like a rotton cabbage I imagine
 

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ellazmeanie
felt pretty awful for the last couple of days sick from head to toes behind face and eye's giddy and my guts feel stretched to bursting point,my side's feel so rigid and nauseous.
 

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ellazmeanie
I feel rancid can't wait for January's gastro appointment feels like ages away,have my mri to be going on with though on December 11th finally at a time I'm easy with 10.15am and awaiting results of blood tests and nerve conduction studies.Sent for some nicotine free e cigarettes something to draw when I stress as these nicotine one's are doing me in got 6mg today and still feel sick as with them.
 

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ellazmeanie
I wouldn't be surprised if I have crohns as a few of my symptoms match what I read on here like the body aches or maybe some form of ibd I shall mention all to my gastro
 

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ellazmeanie
Most the results were normal except for a liver 1 and a blood sugar a bit above normal and also a stomach 1 a long word I can't recall 2 minutes after the call ;) showed maybe I have an indication of ibd which after year's of ibs is a step in the right direction,the doc is going to give me a print out to bring to my gastro appointment still waiting on remainder of test results but I'm happy that she said ibd and not the old ibs tag.
 

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ellazmeanie
Finally my gastroenterology appointment is here, tomorrow at 11.40am hope they can shed some light to what I have going on.
 

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ellazmeanie
Waste of an appointment that ended up being, ended up asking him to refer me to gastro at the same hospital I'm having the colostomy at.
 

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ellazmeanie
The gastro basically ended up with the same view he had when I saw him over a year ago, that all my stomach issue's the distention and all are down to mental health and sticks with the idea that talking to a shrink is some kind of magical cure like I've not been down that road before whole appointment seemed like one big fob off to me so asked him nicely to refer me to the gastro at the same hospital I'm having the colonoscopy at.Mri scan showed normal so don't think I have any cerebellum issues which is a relief something showed though frontal development venous anomaly don't think it's a problem in itself not sure about possible complications though.Colonoscopy Saturday prep not been so bad so far though not enjoying white plastic bread ;) and after 9am Friday can't eat just drink than the laxatives, luckily my gaff is very small so not a long trip to the loo :)
 

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ellazmeanie
Don't know if that's good or not but the frontal venous anomaly thing that showed on the mri scan as a coincidental finding and not a supposed major issue though some of the things it could lead to don't sound nice, one of the symptoms is headaches migraine hemicrainia split doesn't mention cluster headaches which I suffered from for years also facial pain and weakness in limbs especially the right arm which I've had issues with since last year such as pain dunno if there's a link there at all seems to explain why I get mad headaches though.
 
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