Share Facebook
Crohn's Disease Forum » Your Story » All started in 1993


 
09-21-2014, 07:31 AM   #1
guest20
ellazmeanie
 
Join Date: Sep 2014
Location: london, United Kingdom

My Support Groups:
All started in 1993

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
Attached Images
File Type: jpg Email001.JPG (192.7 KB, 33 views)
09-21-2014, 09:35 AM   #2
guest20
ellazmeanie
 
Join Date: Sep 2014
Location: london, United Kingdom

My Support Groups:
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
09-21-2014, 01:20 PM   #3
guest20
ellazmeanie
 
Join Date: Sep 2014
Location: london, United Kingdom

My Support Groups:
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
09-23-2014, 09:09 PM   #4
Jennifer
Adminstrator
 
Jennifer's Avatar
Hi ellazmeanie and welcome to the forum! 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.
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
09-24-2014, 01:59 AM   #5
guest20
ellazmeanie
 
Join Date: Sep 2014
Location: london, United Kingdom

My Support Groups:
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
09-24-2014, 02:24 AM   #6
guest20
ellazmeanie
 
Join Date: Sep 2014
Location: london, United Kingdom

My Support Groups:
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
09-24-2014, 03:07 AM   #7
guest20
ellazmeanie
 
Join Date: Sep 2014
Location: london, United Kingdom

My Support Groups:
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
09-24-2014, 04:31 AM   #8
Jennifer
Adminstrator
 
Jennifer's Avatar
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?
09-24-2014, 05:19 AM   #9
guest20
ellazmeanie
 
Join Date: Sep 2014
Location: london, United Kingdom

My Support Groups:
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
09-24-2014, 11:19 PM   #10
guest20
ellazmeanie
 
Join Date: Sep 2014
Location: london, United Kingdom

My Support Groups:
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
09-25-2014, 04:03 AM   #11
Jennifer
Adminstrator
 
Jennifer's Avatar
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.
09-25-2014, 04:33 AM   #12
guest20
ellazmeanie
 
Join Date: Sep 2014
Location: london, United Kingdom

My Support Groups:
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
09-25-2014, 06:30 AM   #13
juggys69
Senior Member
 
juggys69's Avatar
 
Join Date: Sep 2014
Location: Coventry, Rhode Island

My Support Groups:
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.
__________________
An ongoing study of suffering and pain~~~~
09-25-2014, 06:44 AM   #14
guest20
ellazmeanie
 
Join Date: Sep 2014
Location: london, United Kingdom

My Support Groups:
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
09-25-2014, 07:13 AM   #15
juggys69
Senior Member
 
juggys69's Avatar
 
Join Date: Sep 2014
Location: Coventry, Rhode Island

My Support Groups:
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.
09-25-2014, 07:18 AM   #16
guest20
ellazmeanie
 
Join Date: Sep 2014
Location: london, United Kingdom

My Support Groups:
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
09-25-2014, 07:19 AM   #17
guest20
ellazmeanie
 
Join Date: Sep 2014
Location: london, United Kingdom

My Support Groups:
last 3 gps have been a lil bit more understanding so far so live in hope
09-25-2014, 07:28 AM   #18
juggys69
Senior Member
 
juggys69's Avatar
 
Join Date: Sep 2014
Location: Coventry, Rhode Island

My Support Groups:
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.
09-25-2014, 07:35 AM   #19
guest20
ellazmeanie
 
Join Date: Sep 2014
Location: london, United Kingdom

My Support Groups:
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
09-25-2014, 08:50 AM   #20
guest20
ellazmeanie
 
Join Date: Sep 2014
Location: london, United Kingdom

My Support Groups:
have rheumatology added to next weeks appointment now
09-25-2014, 08:51 AM   #21
guest20
ellazmeanie
 
Join Date: Sep 2014
Location: london, United Kingdom

My Support Groups:
think they will do a biopsy on my temple
09-28-2014, 01:11 PM   #22
guest20
ellazmeanie
 
Join Date: Sep 2014
Location: london, United Kingdom

My Support Groups:
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
09-28-2014, 09:56 PM   #23
juggys69
Senior Member
 
juggys69's Avatar
 
Join Date: Sep 2014
Location: Coventry, Rhode Island

My Support Groups:
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~~
09-29-2014, 04:38 AM   #24
guest20
ellazmeanie
 
Join Date: Sep 2014
Location: london, United Kingdom

My Support Groups:
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
09-29-2014, 02:08 PM   #25
guest20
ellazmeanie
 
Join Date: Sep 2014
Location: london, United Kingdom

My Support Groups:
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
09-29-2014, 03:02 PM   #26
guest20
ellazmeanie
 
Join Date: Sep 2014
Location: london, United Kingdom

My Support Groups:
pain worse n feel a lil nauseous was on toilet wanting to be sick same time
09-30-2014, 02:31 AM   #27
guest20
ellazmeanie
 
Join Date: Sep 2014
Location: london, United Kingdom

My Support Groups:
off to hospital appointment in a bit
09-30-2014, 12:07 PM   #28
guest20
ellazmeanie
 
Join Date: Sep 2014
Location: london, United Kingdom

My Support Groups:
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
09-30-2014, 12:14 PM   #29
Jennifer
Adminstrator
 
Jennifer's Avatar
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).
09-30-2014, 12:31 PM   #30
guest20
ellazmeanie
 
Join Date: Sep 2014
Location: london, United Kingdom

My Support Groups:
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
Reply

Crohn's Disease Forum » Your Story » All started in 1993
Thread Tools


All times are GMT -5. The time now is 12:39 AM.
Copyright 2006-2017 Crohnsforum.com