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Eugh yuck I am off work today! This is a nightmare! I'm going to try to go in this afternoon. I think I'll need to call my docs and let them know what's going on, I hate doing this but I think they need to get me on another med now. I was chatting to one of my patients yesterday who had crohn's 25 years ago, took sulfasalazine for 3 years and has never looked back - I want that! I'm tired of the docs dragging their heels.

I have been on pred since last August and generally I still feel a hell of a lot better than I did before it, but it is not a long term solution at all. I'm not down to 7mg and can definitely say it's getting worse. D twice in one week has not happened to me for about 4 months now! And the stabbing abdominal pains are coming back. Would you guys ring your doctors do you think?? I always feel like I'm bothering them, I'm such an idiot lol.

As for rheumatologists, personally I have found them the most attentive and warm doctors I've met. I've seen three and could not fault any of them for effort. They seem to spend more time with you and actually listen to what you're saying, which is more than I can say for the gastros I've seen! I think you'll get on well with a rheumatologist, Cat. Mine has spent a lot of time with me and has been the only one to get me any relief from my bowel symptoms.

Maree, I'm not sure how things work with kids but I can tell you tests for crohns etc. are pretty unreliable. My calprotectin tests are what are leading my GI to believe I have it in the small bowel but they have never found it on a scope or scan. They are going to medicate me for it anyway. I would personally be pushing for some tests of the upper GI tract, and repeating the calprotectin tests. My calprotectin tests were absolutely normal when I was hospitalised a couple years ago, and high when on high dose steroids, so they can sometimes show up nothing when clearly something's going on. Do his bloods come up normal?

There's also an undiagnosed kids thread btw :)
http://www.crohnsforum.com/showthread.php?t=18372
 
Isgs sorry to hear your feeling unwell again, hope that when you back to see your GI he's able to find some more answers.

My sister has started a thread for Liam in the kids forum, which I do post updates on. However it's lovely to find some more people who are in limbo land :)

Liam's GI has said he'll review him in after 3 months on the PPI if the symptoms persist. I'm also monitoring his growth percentile lines very carefully and if he continues to drop through BMI & Weight lines I'll use that as an excuse to take him back. Currently he isn't seeing a Pediatric GI as there are only 2 of them in the country and both are in public hospitals (living in a developing nation, public hospital aren't places I'm comfortable taking my child).

He's had a limited set of blood tests and other than the high calproc the only thing that really showed on those is he's borderline anemic. My sister has given me a list of minerals & vitamins that she wants me to try to get them to test for.
 
Good Morning All

Hope everyone is well

Well i have had the weekend from Hell

I lost my Father in Law to Cancer on Sunday Morning and just cant face any food so my tummy is well and truely all over the place

i have my GI appointment tomorrow to be honest a hospital is the very last place i wanna be at the mo after spending the week in the onocology ward

that place is the heartbraking and humbling place i have ever been

makes you really thankfull for the life we all have

Loads of love

stacey
xxxx
 
Sorry to hear about your father-in-law Stacey. Sounds like the week you've had would have taken an enormous toll on anyone, even if they we're in good health.

Hope that the visit to the GI goes really well and you get some positives to take out of that.
 
Hi Maree, welcome. I'm glad you've gotten some good support here - I'm also glad you've got a very supportive sister who is helping you through this! I hope your son gets some answers and proper treatment soon.

lsgs, I'm sorry to hear you're doing so poorly. Have they scheduled your MRE yet? Hopefully you can have it soon - the one upside of feeling awful is that hopefully it means something will show up on the test. Thanks for the rheumy info, I'm hopeful but not overly optimistic. If they can figure out my arthritis (what type, what's causing it, why does it seem to be worsening, etc) then I'd be happy - I don't expect them to figure out my gut issues. I haven't heard anything yet about the referral so I just have to be patient for awhile I guess.

Stacey, big hugs hun! I'm so sorry to hear about your father-in-law. I hope you can get through your GI appt and feel better soon. Can you stomach anything right now, even something like broth? I'm worried about you, I know stress/grief just kills my guts so I can't even imagine how you must be feeling. I hope it all gets better soon.

How's everyone else doing? I'm exhausted - I hate Daylight Savings time so much. It seems to take my body about a week or so to get used to a new sleep schedule. I just cannot deal with the time change. Other than that, though, I'm pretty well. Exercising every single day now and loving it. Eating as well as I can (my new juicer is in the mail and I should get it by Friday!). Doing okay, just so tired right now.
 
I had many years of being undiagnosed. During that time, I became alienated from people because I could not go places or do things. I hope that on this board I find people who understand what others cant - that my life became a hermitage,
 
Hi everyone. I thought I'd drop in to say Hi. I have no results as of yet but got some bad news I have to get cells removed From cervix- so dreading that! The pain is unbearable at the min and I've lost so much more weight. I don't know what is going to happen to me I just want back what this illness has stolen from me. I have an appointment with my GI in April but he seems eager to discharge me.
A life in pain= no fun!
 
Hi cat,

In ref to the rheumy, I would just be sure there is a good level of communication between him and your gastro. My rheumy was adamant with me that I be sure that the gastro keeps him in the loop on tests, procedures and meds.

Good luck with your visit

Cassy
 
I just wanted to ask about the calprotectin test. Is tthat a definitive test or does it fluctuate? My rheumy just ran it. Also, my recent routine labs showed a low potassium. Does that happen with anyone? I don't have much diarrhea at this point due to my pain meds, but I'm concerned about my body absorbing necessary nutrients. Maybe the potassium is a sign?

Cassy
 
My guess would be yes. That would be a sign. I eat a banana everyday because it is one fruit that does have alot and I can actually eat without the D hitting me. Also if you can eat potatoes, some can't. They have alot too. But I would get it tested every so often. Some companies have come out with gummies or tablets that melt in your mouth for better absorbtion and they have a good taste. Maybe you can find one that has it in and try them.:)
 
Cassy my faecal calprotectin has varied wildly over the years and doesn't always correlate with severity of symptoms. When I was hospitalised it was negative! Then when everyone fully expected it to be negative on high dose steroids it was the highest it's ever been despite me feeling amazing.

Cat I've heard nothing about the MRE. I think that's been about 2 months, it should be coming up soon. I spoke to my rheumatologist who said he only put me on aza if I 'nag' him despite my GI saying it's safer than pred. So confused. So I've to go see him at hospital tomorrow to have all my inflammation markers checked. I called my GI too and as usual, no call back from him. My rheumatologist went off on a rant about how if I was to get pregnant on the aza I would need to decide whether I wanted to take the risk of harming my baby or have a termination... I thought that was a little weird.

I would make sure you tell the rheumy EVERYTHING. Rheumatology is a weird speciality where the weirdest symptoms can point to a diagnosis. My condition sjogren's syndrome is normally only diagnosed in those over at LEAST 40! So to get it at my age was pretty unusual. I would never have thought of telling a doctor I had dry mouth and dry eyes, I put up with it for years... So the littlest things can help them diagnose. So don't leave out the bowel symptoms because you think he can't help. Rheumatologists are smart guys.

Good luck at the GI Stacey don't let him fob you off!!!! Let us know how you get on and I hope you're doing better today :)
 
Oh my god, I can't believe this. My GI's secretary just phoned and passed on a message from my GI...

He said that it would be more 'appropriate' for me to contact my rheumatologist (as I have done!) as there is no GI indication for steroids even though my rheumatologist told me in his letter he said there was, and also he told me at last clinic appt I had IBD just not sure where or what!

He also said if there's an emergency, go to A&E, if you have any other concerns, go to your GP.

I am horrified. What doctor responds this way to a patient phoning reporting they are unwell again?! He is basically telling me to bugger off... I don't know what to do, I'm actually shocked considering his attitude was great at our last appt?!

Thank God for rheumatologists, seriously.
 
Isgs,
Don't take it personally or feel like you are being sorted out as a pain in the butt. In my experience most Dr.s come off as unfeeling and cold. They are matter of fact and tell you what they think no matter what YOU think or know!
I had crohn's, was given pictures of it at colonoscopy and just had another colonoscopy and no crohn's showed up. So now they are saying probably IBS!!!
I was like, well what about the ulcers I had and all the symptoms etc.... Oh, it could've been from taking nsaids. I hadn't taken nsaids in years because of kidney issues! Sorry you are dealing with the "God syndrome"too.:(
 
Wow, a lot of posts! I'm going to do my best to respond to everyone.

Misunderstood, welcome to our little club. Are you still undiagnosed or were you finally able to get a diagnosis?

Gabi, thanks for checking in, we worry about you! I'm sorry to hear things are still bad. I hope the appointment in April is worthwhile. How much weight have you lost? My GI always takes notice if I lose even 5 lbs, so I'm fortunate that he takes things like that seriously. I'm hoping your doc takes you seriously too. Hang in there, I hope you can get some relief soon!

Cassy, as for potassium, I seem to get low in it when I exercise. I get awful foot/toe cramps when I sweat, and it seems to be because I lose too much potassium through my sweat. I can't have bananas either as they cause pain and worsen my GERD symptoms, so I'm pretty limited. I've heard that sweet potatoes are fairly high in potassium so I try to eat those regularly. I know that's not much help, but I feel for you on the low potassium. Do you get the foot/toe cramps too?

lsgs, thanks, I will make sure to tell the rheumy my full medical history (I hope they have a lot of time to listen! Ha ha). Fortunately, my doctors (GP and GI) are in the University of Wisconsin medical system and the new rheumy will be too - this means they're all on the same computer system and can all access my files and can easily communicate with me and with each other. So hopefully the rheumy will glance at my chart before my appointment - if not, they will at least have access to my entire file. I'm pretty sure that the way the computer system is set up, if one of them orders a test or whatever, the others get a notification about that. Like facebook for doctors or something. :p

Stacey, glad to hear you've been able to eat a little bit. Hope you're doing okay given the circumstances. Hang in there! How did the GI appt go?
 
Hi

The GI appointment went well

he wants me to have a Pill Cam as the bloods have come back with high inflammation markers again and there is high level of protein my the stool sample

and he now agrees that it cant be IBS so that a relief that he now agrees with my GP and the dietitan

moving forward which is good

im also gonna atempt chicken rice and some veggies tonight get some decent food in me

Sending loads of love

xxx
 
StaceyC96 said:
Hi

The GI appointment went well

he wants me to have a Pill Cam as the bloods have come back with high inflammation markers again and there is high level of protein my the stool sample

and he now agrees that it cant be IBS so that a relief that he now agrees with my GP and the dietitan

moving forward which is good

im also gonna atempt chicken rice and some veggies tonight get some decent food in me

Sending loads of love

xxx
Click to expand...

So glad to hear you are getting somewhere! :)
 
IsGs,
Let us know how the chicken and rice went. I always could eat that too. I would just put the breast in a preheated pan with pam and add some salt and pepper and just cook till done on both side. Rice right in the pan with it when done and stir in veggies. Some butter and yum, good to go!:)
 
Hi peeps!

@cat - I forget that you haven't been seeing a rheumatologist.. which surprises me when you have arthritis. You know I think my rheumatologist is the best doctor I have seen. Not once have I felt judged and he always listens. He thinks outside the box and looks at symptoms as well as results.. as you know my blood rarely shows anything - but he still offers to treat my symptoms even when my results dont match up.
Rheumatologists deal with an array of auto immune illnesses. So make sure you discuss your bowel issues as well as your joints. For instance.. have any of your bowel meds helped with your joints too? (When I was on pred for my bowels.. it helped my joints too!)

@lsgs - I cant believe the cheek of your GI!! You'd think he would've at least seen you for a physical examination if your symptoms are worse?!? :hug: maybe you should seek a 2nd opinion?

@stacy - im glad your GI wants to do a pill cam.. losing the weight at the speed you have been clearly indicates something more than IBS. Are you seeing a rheumy too?

@crossroaads - im sorry to hear that your diagnosis is being questioned. That cant be easy to deal with.. It frustrates me that they found evidence of Crohn's before and now they deny it. What is your GI suggesting you do now?

Meanwhile for me.. everyhing is the same. Just really tired again.. things are getting easier at work since I requested a new team.. they are so lovely and my new manager is easier to talk to.
I cant remember if I told you that im being booked for another MRI scan to check if my chiari has got worse.. the neurologist suspects chronic migraines and has banned me from taking paracetamol for 2wks and take migraine meds instead. I dont think he heard me when I said that I rarely took pain meds anyway because im just so used to everything...
He also had the cheek to say "I want to give you some feedback... you're very in tune with your body and symptoms and that you think every little thing means something (in other words a hypochondriac)" he then said I spent the 1st 10 minutes continually talking about everything I've had done..
Well im sorry.. but when a doctor asks "so, explain to me what's been going on" - im gonna answer in as much detail as possible. It really peed me off haha
 
Hi folks, just a quick post from me today.

Chased my referrals yesterday and was promised a call for today by GP's secretary, ominously the receptionist could see the Rheumy's letter on screen with "referral" highlighted but nothing else. So it looks like the letters haven't been done. Why do I put my faith in people, decided not to chase after a few weeks this time and look where it has me! :voodoo:

It is my Birthday on Saturday and I am pretty sure all my friends have forgotten so I am pee'd off. And my US family understandably have alot to deal with.

Life sucks hey!
 
Hi Bozzy

No Rhumy as of yet, nut im gonna request on as my knees and shoulder are playing up ( old dancing injuries )

how do i go about getting an appointment

cheers hunni

xxx
 
bozzylozzy said:
Hi peeps!

@cat - I forget that you haven't been seeing a rheumatologist.. which surprises me when you have arthritis. You know I think my rheumatologist is the best doctor I have seen. Not once have I felt judged and he always listens. He thinks outside the box and looks at symptoms as well as results.. as you know my blood rarely shows anything - but he still offers to treat my symptoms even when my results dont match up.
Rheumatologists deal with an array of auto immune illnesses. So make sure you discuss your bowel issues as well as your joints. For instance.. have any of your bowel meds helped with your joints too? (When I was on pred for my bowels.. it helped my joints too!)

@lsgs - I cant believe the cheek of your GI!! You'd think he would've at least seen you for a physical examination if your symptoms are worse?!? :hug: maybe you should seek a 2nd opinion?

@stacy - im glad your GI wants to do a pill cam.. losing the weight at the speed you have been clearly indicates something more than IBS. Are you seeing a rheumy too?

@crossroaads - im sorry to hear that your diagnosis is being questioned. That cant be easy to deal with.. It frustrates me that they found evidence of Crohn's before and now they deny it. What is your GI suggesting you do now?

Meanwhile for me.. everyhing is the same. Just really tired again.. things are getting easier at work since I requested a new team.. they are so lovely and my new manager is easier to talk to.
I cant remember if I told you that im being booked for another MRI scan to check if my chiari has got worse.. the neurologist suspects chronic migraines and has banned me from taking paracetamol for 2wks and take migraine meds instead. I dont think he heard me when I said that I rarely took pain meds anyway because im just so used to everything...
He also had the cheek to say "I want to give you some feedback... you're very in tune with your body and symptoms and that you think every little thing means something (in other words a hypochondriac)" he then said I spent the 1st 10 minutes continually talking about everything I've had done..
Well im sorry.. but when a doctor asks "so, explain to me what's been going on" - im gonna answer in as much detail as possible. It really peed me off haha
Click to expand...

Hi Bozzy, GI is now suggexting stool samples and then pillcam to follow depending on outcome . I am ready to just quit with all the tests and other tests I must do for kidney DR. ot flaring at the moment.:)
 
Bozzy, I had asked awhile back to be referred to a rheumy, but my GP felt for some reason that an orthopedic surgeon would be better to start with (I don't remember his reasoning as to why he thought that). So I saw the ortho surgeon who couldn't even tell if I had arthritis or bursitis and didn't do anything for me but offer to refer me back to physical therapy. I declined his offer and didn't see that doc again, total dead end. Then the arthritis was fine for awhile as long as I kept up with exercising my hip, so I didn't worry too much about it. But this winter, the hip has been aching regularly, particularly when it snows, so I went back to my GP about it.

And I don't know if any of the IBD meds ever helped with my hip. I had started tapering off of Entocort right around the time when I first experienced hip pain, so it's possible that tapering off the the steroids did something to trigger the arthritis, but I really don't know. Asacol hasn't had any effect on the hip as far as I can tell. Acetaminophen (paracetamol) and arthritis creams and my heating pad help a bit and can take the edge off, but stretching and strengthening exercises still help it the most. But when it's very cold out or if it's going to snow, particularly if there's a large amount of snow in the forecast, it just aches and there's not much I can do about it.

Bozzy, best of luck with the MRI! I hope the chiari hasn't progressed and I hope they offer you more options than just surgery. But what a snarky doctor, saying in a roundabout way that he thinks you're a hypochondriac! I wish some of these docs could live in our shoes for one day, then they wouldn't think anything of the sort.

Star, big hugs. I hope you can have a good birthday and I hope everybody remembers it. Have you been able to talk to your grandfather on skype? How is he doing?

Stacey, I am not sure how it works there, but here in the US you just go to your GP and ask for a referral to a specialist. My GP is referring me to a rheumy. He puts the request in saying I need to see a specialist, then the rheumy department calls me and sets up an appointment with one of the doctors there. Not too difficult and I would think you could arrange it by calling your GP and asking. Good luck!
 
Stacey I got referred to my rheumatologist via my gastro but I would probably try your GP first and explain the situation.

723crossroads, you are exactly right it is the 'god syndrome'.

I now have to decide what to do. I have the option of being referred to another GI but I would need to phone GI 1's secretary and ask him to refer me to GI 2. Which is a little awkward. But it's quite clear GI 1 is NOT interested if I can phone and say I'm ill and that is the response. And also to deny there was a GI indication for steroids! Considering my rheumatologist has written ?IBD on my specimen forms it's obviously something they're seriously contemplating. I just keep chickening out of the phone call!! GI 2 is not an ideal situation as he can be quite arrogant but it's got to be better than GI 1!!

bozzy I hate that attitude from doctors, let them walk in our shoes for even a day, honestly.

Star that is shocking about your referrals! Actually had enough of doctors today!
 
lsgs, is there an option of finding a GI #3 to get a new set of eyes on your case? It sounds like #1 and #2 are both far from ideal! I wouldn't worry too much about making that phone call though, it probably happens all the time (particularly with a doctor who is as bad as this one sounds). These doctors are professionals and should not take it personally, or if they do take it personally then it should send a message that they're doing something wrong and should remedy that! But at any rate, do what is best for your health, don't even let your doctors feelings or awkwardness factor into it. Believe me, I am the queen of awkward (speaking of chickening out, I am so socially awkward and introverted that I've chickened out multiple times now - I want to ask my GP if I can be tested to see if I might have Asperger's, but just the thought of asking about it makes me so nervous!). Anyway, I'm rambling. Yes, it might be awkward, but what's most important is your health, so do what you need to do, even if it isn't easy. Someday I'll take my own advice. :p
 
thank you for starting this after lots of normal results i am now awaiting results from my MRI that i had yesterday im fed up its nice to know im not alone
 
Hi
I was undiagnosed for years until I had an obstruction. They removed the obstruction told me I would be good as new after surgery.
They lied. The lab diagnosed crohns by testing the bowel section that was removed. Anyway removed 20 cm and did 4 stricturplastys and told me I was good as new.
Surgeons (2) adamently told me they see no reason now for my symptoms. Oh sorry now I have ibs as I've been told my crohns is in remission.
Finally had a cap endo that showed active crohns dr added remicade to my medications. After 3 treatments very minimal improvement. At least it is enough to encourage me to get more mobile (30 min) But when I do so I am usually tub and bed ridden the following day. But I keep trying. The more mobile I am the more pain vomiting etc. I get night sweats every night. And regular hot flashes that leave me soaked. Totally exhausted.
Dr recommended taking me off remicade. I stated Jan 7 not even the 12 weeks. I requested to stay on as because I've had issues for over 20 years and maybe it will take longer. Like I said I have had some minimal improvement. Taking less anti nausea.
I'm so very tired every day. I'm looking for quality not quantity. I'm under 50 and have check out nursing homes as an option. They may be able to make this work as a live in and get me feeling better. Really don't know what else to do. I don't like being a burden. I've worked since I was 16 and never stopped not even any maternity leave. Loved being a workaholic.
This disease has cost me everything. If I can't have some quality then I really do not want any quantity.
Nobody seems to be able to tell me what is going on why I feel this way. I've been super sick since 2010 and moderately before that.
I can't physically do this much longer without some relief.
So sorry for the long post. I would love to find someone with similar issues. There's gotta be someone out there with similar problems. I understand can't heal everyone but my needs are simple. I would at least like to be able to take care of myself. My 93 year old grandmother does. If my husband wasn't here I would be in a nursing home.
 
mjr, am keeping you in my prayers! :)There are alot of people on here who have been as sick as you. Look arund the forum and I'm sure you will find others who have the same problems. I wish I could help you as I am not in that bad shape and hope not to be. Plz checkout the paleo diet thread and meds threads and probiotics etc.... There is so much helpful info on this forum and many who can steer you in the right direction. Start a new thread and maybe that will help.Go to main forum page and click on New Thread at top of page and ask for help. OK? Good hunting hon!:hug:
 
mjr are they offerring an alternative medicaton to remicade? Looking around the forums what I've noticed is different people have success with different drugs. So a different drug or combination of drugs might work better for you. If your doctors are suggesting you try something else instead that could be worth trying. If their not offerring alternatives I think you need to consider getting a second opinion.
 
Wow! So much going on. You are all in my prayers. Here's the update on me.

My first surgery to replace my implanted port is scheduled for this coming Wednesday at 7:30 am. I have to be at the hospital by 6am. The surgery will be done in the Cath lab. The surgeon will take biopsies of the skin and underlying tissue as well as the port. Once the right medicine is decided up on for the infection, I will have to be on it for a minimum of 5 days before the next surgery. 17 & 1/3 days of IV antibiotics plus 4 other antibiotics did not knock this infection out. The second surgery is scheduled for Thursday, March 28 at 8:30 am and will be done in the OR at Carroll Hospital Center as well. It is a much more involved surgery. They will have to go in through my neck in order to avoid the veins with the chronic blood clots. I have to be there at 6:30 am. I am not a morning person! My home nurse came out today and put an IV in my arm. Thank goodness. It hurt so much due to my Reflex Sympathetic Dystrophy but is needed so much. I am now getting my IV fluids through it. I will be at Kailah's memorial service tomorrow. She was like a daughter to me. She had her liver transplant when she was 17 years of age. I took care of her while she was in the hospital before, during and after her transplant. When she came home, I continued to care for her by taking her to her doctor appts. and having the school tutor come to my home. She graduated high school with my oldest son. I cared for her during the day until her step mom could pick her up after she got off work. I am having trouble wrapping my brain around what has happened to her. She had a tough short life here on earth. At least she is in heaven where Jesus and God can meet her needs. http://www.legacy.com/obituaries/ca...px?n=kailah-m-smith&pid=163628132#fbLoggedOut
We'll have to wait and see if I can participate in the fellowship afterwards. The infection makes me very tired and weak. Hugs to everyone!
 
Naturelover said:
Wow! So much going on. You are all in my prayers. Here's the update on me.

My first surgery to replace my implanted port is scheduled for this coming Wednesday at 7:30 am. I have to be at the hospital by 6am. The surgery will be done in the Cath lab. The surgeon will take biopsies of the skin and underlying tissue as well as the port. Once the right medicine is decided up on for the infection, I will have to be on it for a minimum of 5 days before the next surgery. 17 & 1/3 days of IV antibiotics plus 4 other antibiotics did not knock this infection out. The second surgery is scheduled for Thursday, March 28 at 8:30 am and will be done in the OR at Carroll Hospital Center as well. It is a much more involved surgery. They will have to go in through my neck in order to avoid the veins with the chronic blood clots. I have to be there at 6:30 am. I am not a morning person! My home nurse came out today and put an IV in my arm. Thank goodness. It hurt so much due to my Reflex Sympathetic Dystrophy but is needed so much. I am now getting my IV fluids through it. I will be at Kailah's memorial service tomorrow. She was like a daughter to me. She had her liver transplant when she was 17 years of age. I took care of her while she was in the hospital before, during and after her transplant. When she came home, I continued to care for her by taking her to her doctor appts. and having the school tutor come to my home. She graduated high school with my oldest son. I cared for her during the day until her step mom could pick her up after she got off work. I am having trouble wrapping my brain around what has happened to her. She had a tough short life here on earth. At least she is in heaven where Jesus and God can meet her needs. http://www.legacy.com/obituaries/ca...px?n=kailah-m-smith&pid=163628132#fbLoggedOut
We'll have to wait and see if I can participate in the fellowship afterwards. The infection makes me very tired and weak. Hugs to everyone!
Click to expand...
:ghug:Many~ many hugs out to you hon! Will keep you in prayer!So sorry you are going thru a;ll this at one time. It rains, then pours. Happened to me less than a month ago. God gets us thru it tho. Thank God for Him!
 
Nope says remicade is the last option.
I could try to beg the surgeon that told me to get a life to cut out the bottom section of bowel.
But other than that nothing.
Asked him about doing an MRI he asked me what would I do if That came back negative.
I suppose that means I'm shit out of luck and I just have to go on as best as I can.
He keeps saying I have ibs now not crohns but symptoms have never changed. And in searching things like night sweats hot flashes vomiting exhaustion are not symptoms of ibs. So I keep pushing and I'm so confused as this is what my capsule endoscopy showed

Surgical clip small ulcer possible anastomoses
Anastomoses deformity small pseudodiverticulum
Generalized edema
Small ulceration w deformity (surgery)
Ulcer with NON surgical stricture (stricturing crohns) with marked edema erythema. Cap held up 45 min
Black base ulcer stenosis inflammatory polyp(surgical 45 min held up)
2 subtle areas of stenosis at distal ileum
Took total 5 1/2 hrs to pass to large bowel.
He says my colon is not ulcerated therefore crohns is not my problem.
I suggested it is stricturing crohns by email after I got home. Haven't heard back.
Have to apply for MRI see if Medicare will pay for it as it is at a private clinic.
He had me trying the scd diet. Now back to low fiber.
I got blood test back and cholesterol is up a lot from last test. But that may mean that my body is starting to absorb fats better. My last test the nurse told me she had never seen cholesterol levels that low before and suggested asking doctor about it as it was well below normal. I have no idea what the number was. But now it is 3.84.
Apparently because the surgeon does not see the problems when they cut me open they see no problem.
Even when I had my appendix out it was the lab the diagnosed the inflammation. Dr said it didn't look bad but removed it anyway and labs came back positive for appendicitis. Dr was surprised. The inflammation is there but it is not external to the bowel. It is internal scar tissue I suspect.
Anyone else have similar cap results and similar symptoms. And this crazy inflammation that is only diagnosed by lab?
Diagnosed with crohns but my dr is in denial lol
Thanks a bunch.
 
mjr said:
Nope says remicade is the last option.
I could try to beg the surgeon that told me to get a life to cut out the bottom section of bowel.
But other than that nothing.
Asked him about doing an MRI he asked me what would I do if That came back negative.
I suppose that means I'm shit out of luck and I just have to go on as best as I can.
He keeps saying I have ibs now not crohns but symptoms have never changed. And in searching things like night sweats hot flashes vomiting exhaustion are not symptoms of ibs. So I keep pushing and I'm so confused as this is what my capsule endoscopy showed

Surgical clip small ulcer possible anastomoses
Anastomoses deformity small pseudodiverticulum
Generalized edema
Small ulceration w deformity (surgery)
Ulcer with NON surgical stricture (stricturing crohns) with marked edema erythema. Cap held up 45 min
Black base ulcer stenosis inflammatory polyp(surgical 45 min held up)
2 subtle areas of stenosis at distal ileum
Took total 5 1/2 hrs to pass to large bowel.
He says my colon is not ulcerated therefore crohns is not my problem.
I suggested it is stricturing crohns by email after I got home. Haven't heard back.
Have to apply for MRI see if Medicare will pay for it as it is at a private clinic.
He had me trying the scd diet. Now back to low fiber.
I got blood test back and cholesterol is up a lot from last test. But that may mean that my body is starting to absorb fats better. My last test the nurse told me she had never seen cholesterol levels that low before and suggested asking doctor about it as it was well below normal. I have no idea what the number was. But now it is 3.84.
Apparently because the surgeon does not see the problems when they cut me open they see no problem.
Even when I had my appendix out it was the lab the diagnosed the inflammation. Dr said it didn't look bad but removed it anyway and labs came back positive for appendicitis. Dr was surprised. The inflammation is there but it is not external to the bowel. It is internal scar tissue I suspect.
Anyone else have similar cap results and similar symptoms. And this crazy inflammation that is only diagnosed by lab?
Diagnosed with crohns but my dr is in denial lol
Thanks a bunch.
Click to expand...

No I have not. Is there another team of GI's in your area that you could get a 2nd opinion? That would be my next step. Maedicare won't pay for an MRI unless a DR. deems it necessary end even then they have to approve whether it is necessary. I just had a catscan and mine said he saw nothing. Also colonoscopy and sa w no more ulcers. So I am back tpo IBS again! I say BS!!!!
 
I was first on pentasa then azathioprine (still taking) and had my 3rd infusion of remicade Feb 21.
He states my capsule endo didn't show any issues to explain my symptoms therefore must be ibs.
When surgeon opened me for bowel obstruction. He though I had adhesion disease no visual sign of crohns. Only the lab came back as positive for crohns.
I was born with gastro problems. Could not drink formula. Need a special hypoallergenic formula as a baby. So diagnosed at 45 a long time to allow damage.
 
I'm by no means an expert here, have just been reading the forums for a few weeks trying to understand this illness which is one possible explanation of issues my son is having but I'm going to 2nd 723crossroads view that you need a 2nd opinion.

Given the number of different medications that are discussed on this forum for Crohn's and that there seems to be a lot of variation it what works for different people, your doctors statement
remicade is the last option
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doesn't seem to make sense, when you've only tried a couple of the possible options.
 
He has a chart that shows the progression of medications available.
He did try me on cecemet (nabilone) when zofran was not available. It made me dizzy at first then it helped some. But was not as good as zofran. So I have choice one or the other.
Maybe a stronger dosage would work better.
I do have a prescription for pain. 1-2 mg dilaudid every 2-3 hours up to 6 tablets a day. Unfortunately not enough to control symptoms.
That is the worse I have no control of my health unless I choose not to eat.
I'm thinking next may be to switch to a juice liquid diet. I can't take ensure or boost both have dairy. Dairy has been a problem for a long time for me.
Good news I have a good family doctor that really comes through. He sees me a lot more than my gastroenterologist. My specialist didn't even make me another appointment. Hmm just realized that.
 
Hi all, hope you're all doing good.

MJR: Sorry to hear about all that. Those definitely aren't IBS symptoms. In fact they're mostly red-flag non-ibs symptoms. Any other doctors in the area? Maybe even if your doc stays more of a pain in the ass than your troubles, you can find another.

Starry: Happy birthday! Shitty birthday gift from the doctors though. Hopefully that all gets straightened away quickly.

Haven't got time to read any further down than that, just dropping in to let you all know I haven't dropped off the world again.

Lifes been busy, just finished midterm week, did great, I feel. I'm feeling decent too, no gut pain for the most part. Fingers crossed that it isn't going to make a resurgeonce, but this is the time it came back last time. Got my appointments in april to get my heart murmur looked at, and my second opinion GI.

Looking for a new job now, going to be working hard this summer, two jobs hopefully to start saving some money up. Looking forward to getting active again. I have been just way too flat out the last two terms to do anything. Will be real nice to have some time off.

Take care,
Nathan
 
Hi
Thanks so much for all the help.
Funny I've been diagnosed but my doctor seems to reject the diagnosis.
I suspect he might be one of those doctors that works for insurance companies to debunk claims.
Thank God my family doctor is great.
Good news today was a good day "for me". Took 10 minutes did a test and have brain age 68. I've aged 20 years. Lol
 
mjr said:
I was first on pentasa then azathioprine (still taking) and had my 3rd infusion of remicade Feb 21.
He states my capsule endo didn't show any issues to explain my symptoms therefore must be ibs.
When surgeon opened me for bowel obstruction. He though I had adhesion disease no visual sign of crohns. Only the lab came back as positive for crohns.
I was born with gastro problems. Could not drink formula. Need a special hypoallergenic formula as a baby. So diagnosed at 45 a long time to allow damage.
Click to expand...

Wow mjr! Never heard of anyone being born withit. Did your mother or father create any predisposition for it in the family line?
 
Gculk said:
Hi all, hope you're all doing good.

MJR: Sorry to hear about all that. Those definitely aren't IBS symptoms. In fact they're mostly red-flag non-ibs symptoms. Any other doctors in the area? Maybe even if your doc stays more of a pain in the ass than your troubles, you can find another.

Starry: Happy birthday! Shitty birthday gift from the doctors though. Hopefully that all gets straightened away quickly.

Haven't got time to read any further down than that, just dropping in to let you all know I haven't dropped off the world again.

Lifes been busy, just finished midterm week, did great, I feel. I'm feeling decent too, no gut pain for the most part. Fingers crossed that it isn't going to make a resurgeonce, but this is the time it came back last time. Got my appointments in april to get my heart murmur looked at, and my second opinion GI.

Looking for a new job now, going to be working hard this summer, two jobs hopefully to start saving some money up. Looking forward to getting active again. I have been just way too flat out the last two terms to do anything. Will be real nice to have some time off.

Take care,
Nathan
Click to expand...

Take care of yourself and don't overdo it!!! Don't want to get sick again!:rosette2:Great job on your good grades!
 
I am the only one in the family that has been diagnosed.
As a baby I could not tolerate formula and needed special formula mixed up.
I just simply threw up everytime I ate. Dairy is bad. I remember only once drinking instant breakfast the liquid breakfast powder mixed with milk. I got very sick and never drank milk again. I was around 10 at the time. That's a long time ago.
I grew up with asthma since age of 3 used breathing machines inhalers etc. usually ended up in the hospital every winter in an oxygen tent. Was not allowed to go out at recess when in elementary school.
I wonder sometimes if crohns is like allergies but in the bowel. Like asthma can be triggered by allergies. Therefor crohns is triggered by allergies.
I was even on allergy shots and had to stop. My reaction was gastro to an allergy shot. My doctor never had that happen.
Just because my case is tough is no reason for the doctor to decide I'm too much work. I suppose he gets paid the same for easy patients and hard so it sucks for the doctor to have to work harder for one patient. I suspect this must be somewhat frustrating for him to. He has been treating me for over 2 years and I'm marginally improved.
 
Wow mjr!
My daughter shared alot of what you did as a child. She too threw up from the time she was born. Itried everything and nothing changed it. But I think she had acid reflux and still does. But she has asthma too and coughed like a barking dog. Now her son is the same way! Weird! I do think you could be onto something about the allegies in the intestines. I never had crohns when I was young but did have alot of D and gas pains. So maybe I have been dealing with it longer than I realized.
I am doing so much better since I am taking more Vit. D3. Am on 10,000 IU a day. I take it in the morn and eve. I take fishoil and biotin and b complex with folic acid and Vit c in it. Now starting the Mag. citrate too. Probiotics too. I hope things get much better for you soon! God Bless!!!
 
It's all an autoimmune response.
My gastro told me point blank he does not believe in food allergies insofar as the cause of any of my symptoms.
However my family doctor was dumbfounded when I had an allergic reaction by not taking my food allergy capsules (sodium cromoglycate -nalcrom) to an allergy shot to environmental allergies. In my shots were grasses trees dust cat pelt. Can't remember if molds were in there. My gp even called the hospital I was sent to by ambulance to inform them it was an allergic reaction. Neither doctor had ever seen that type of reaction before. The ER dr did say he did not believe it was an allergy as it was no allergy he had ever seen. Good thing my gp was there and saw the whole thing from when it started.
The gastro specialist had me stop taking the food allergy pills as he said they were not helping.
I did stop them and to be honest I didn't get better or worse. But when I started getting really sick I first started thinking my allergy pills weren't helping anymore. Unfortunately there is no substitute.
 
FYI one more thing I recently tried to test for is histimine intolerance. What an awful condition for someone with allergies and producing excess histimines.
I took dao before meals got a month. Unfortunately no improvement. I took my last capsule over a week ago.
This could also cause similar symptoms to crohns.
I think a big problem is like the brain the bowel is very complex and science do not know specifically how they work especially the small bowel as they just don't have visual access to the inside of the bowel and at the same time make repairs like they can with the large bowel. They know some of what the specific parts do but do not know all details.
 
mjr,
I'm sure scientifically you are correct. God made us very complex beings and noone but He can know the intricate web of our intestines. We all seem to be just a little differnet too in that sense, so do what works best for you, despite what the MD"s say! Gotta go. Wishing you the best! T:ghug:
 
bozzylozzy said:
Hi cassy! Welcome to the group! Nothing much for me to add, but we all help each other out through stressful times.. and just ask anytime if you need any help xx

Had a little surprise today. .. my GP called me! Apparently he has been off ill.. and only got to review my latest blood results today.. he said that it showed some irritation to my immune system pointing towards an allergy/intolerance of some sort. So he is referring me to an allergy clinic.

Dont know if you remember.. but I have been dealing with a strange itchy rash since December... plus feeling sore inside my nose. Ive been on strong antihistamines that have helped a lot.. but the minute I forget to take it.. it flares up again.

Its just made me think.. what if im intolerant to something all along causing inflammation? ? I already know im intolerant to strawberries haha
Click to expand...

Bozzy: I have thought all along that my issues are simply the body's reaction to some food allergies. I still believe it. What tests do you have that would turn up an irritation in the immune system pointing to allergy?
 
For gastro related allergies I did have a IGG test done. Mine came back severe to sugar cane, cranberries, yeast, and sesame seeds.
I did completely removed from diet made no difference. But may also be because to avoid sugar have to go high fiber. Can't do both. Unless I want a meat only diet. Lol
 
hi sparkle! if im honest.. i have absolutely no idea what specific blood test he ordered. just said he was checking my immune system. and what i said above - is what he told me.
I've just got to wait for a letter to arrive with an appointment for the allergy clinic.

I'm really hoping it is something im intolerant to.. because that's a lot easier to "treat" than an IBD.

**Sorry i've not been messaging lately to keep up with everybody's posts.. I've been so fatigued and headachey lately**
but I just wanted to say hi to our new members! :hug: xx
 
I finally managed to sort the referral issue. GP wants to see me (which is fair enough because I haven't been for ages- no point when they can't do anything more for me!) so I am going next week and he said he would get them done if I go see him.

Would have been nice if this was communicated to me rather than have my Rheumy's request sit there for over 2 months and I only find out what they want through contacting them!

I will also raise the possibility of getting a totally new Hospital for a second opinion which I am seeing more and more I will need to do depending on how Rheumy sees things in July. I keep worrying about MS and feel I will get laughed at with the Drs who I see now, but someone new I can raise this with in more confidence.

I had a very nice Birthday in the end, rather an up/down day but overall it was nice! A quick home repair (free under the guarantee) turned into a two hour job which I had to pay for, then I spoke to Dad about his trip to see Grandparents- sad and glad that the reality has finally hit home for him- he had been in denial. Then I had my reading from an "animal communicator" which I got selected for by a cat magazine. Pretty astonishing and gave me lots to think about. I have an open mind about these things but a healthy dose of scepticism.

However there is no way she could ever have known the majority of things she told me "from Lily"- so I truly believe Lily communicated with her. Lily had lots of things to say about me which was a surprise because I was expecting the reading to be about her, my questions were around her likes, dislikes etc. Lily had obviously picked up alot about what I am going through and has the measure of me pretty accurately!

Then I talked to my grandmother which was lovely but Granddad was not well enough to speak :( Sadly I do not think it will be long before he leaves us. We are still trying to sort out Skype, Nana is waiting on a new router so she can do it via Kindle as apparently her PC is too old.

Then we had Pizza Hut which I had got the confidence back to try again and see if it's safe- and they kept us waiting over an hour for delivery and got half the order wrong! Very disappointing because I had been looking forward to it for weeks but I was very impressed with their customer service the next day (contacted them via Facebook and they contacted my local Hut) and i've been given a full refund.

I expected a quiet day like any other but all in all it was nice not to be like that!
 
Starr girl,
Thanx for your post. Sounds like it all worked out in the end. I didn't know Pizza Hut was worldwide. I don't like ours over here in US. I prefer privately owned pizza shoppes. Better than the chains.
Hope you keep feeling better everyday!
Also hope Grandad surprises you all and lives another year!!!:ghug:
 
Hi everyone!

I saw gi doc today and he ordered a ct enterography for Thursday. I have the colonoscopy for 4/1 (no joke :) )

I've never had this cte, anyone here? How effective in diagnosing crohns?

Wishing all of you a good night,

Cassy
 
Hello everyone, I'm glad to see I'm not the only one that has had trouble being diagnosed. My world fell apart in May of 2011. Nine days in the hospital and I'm not sure what was worse my tummy or my sanity. Almost two years, three doctors one of which was at the IBD clinic at Vanderbilt and still "nothing". The Dr. at Vandy said I had a major insult to small intestines what has caused IBS. I'm like some of y'all, when I left the hospital they diagnosed crohns and I was on steroids and pantesa. Went to my follow up the doc said no crohns jerked me off all meds and here I am. According to the doc at Vandy I have signs of crohns but they can't find it.

I see a lot of y'all talking about joint pain. How do you know when to get that checked out? My right elbow is horrible. Sometimes I can't pick stuff up because of it.

I'm on amitriptalyne, and that has helped with the pain but it will break through at times. I've decided this is my new way of life. Some days are good some are bad. But my world as I knew it is over. Did any of y'all get hit with this all of the sudden? Just tons of questions.
 
Hi MsJason31, welcome to the forum and the club. Your story sounds a lot like mine - they think I have some form of IBD, probably either Crohn's or microscopic colitis, but they can't find mine either. I have the symptoms and I respond well to the medications, but it's been very elusive and hasn't shown up on any of the tests I've had.

I am one of the ones complaining of joint pain - I have arthritis in my right hip. It started in the winter of 2010/2011. At times it was so bad I was limping and was thinking I'd need to start using a cane soon - that was when I went to the doctor. I just went to my primary care doc, he did x-rays and diagnosed me with arthritis. I went to physical therapy for it which helped a lot for a couple of years, but now it's starting to act up again so I'm going to see a specialist soon. If your elbow is that bad, definitely go see the doctor about it. I was lucky that I caught my arthritis early and was able to treat it with just exercise for a couple of years. Unfortunately arthritis is pretty common with inflammatory conditions like Crohn's.

And yes, I got hit with my IBD all of a sudden. October 9, 2009 - it was just about lunch time, it was a Friday afternoon and I was sitting at my desk thinking about what food I wanted to go pick up for lunch and what I was going to do over the weekend. Then literally out of nowhere, suddenly I was sweating, nauseous, shaky, light-headed, just felt awful! I went home sick and was so sick for weeks. Finally I started feeling somewhat better, so I thought it was just a really bad stomach bug and that it was a one-time thing. Nope! About 6 weeks after the initial flare, it happened again... and again, and again. I've never been the same since.

And I'm on amitriptyline too! I don't think it does a thing for me in terms of pain, but it prevents my migraines which is why I was initially put on it. I never got migraines up until I got this IBD either. Anyway, I'm rambling again, just wanted to say hi and to say that our stories are really similar!
 
Since I started taking a( higher dose of D3) and folic acid I am doing so much better. I had joint pain sooo bad. I just started noticing a huge difference for a week now. I take 2~ 5000IU two times a day with folic acid. Also started to take magnesium citrate last week too. I suggest you give it at least a month, but try it. See if it is safe to take with your meds. Hope this helps you both. The IBS or Crohn's is much better too. No symptoms.
 
I was taking folic acid but it made me nauseous so I stopped it. I take 4000 IU of D3 in the winter and 2000 in the summer. I haven't noticed any difference in the joint pain with the D3. My IBD is in remission thanks mainly to medication and exercise. Working out helps my hip pain, but particularly when it's bitterly cold or when it snows, it just aches and there's not much I can do. Sports creams, tylenol and my heating pad help a little bit, but I'm going to see a rheumy about it because it's beyond the scope of me self-treating it at this point.
 
Cat-a-Tonic said:
I was taking folic acid but it made me nauseous so I stopped it. I take 4000 IU of D3 in the winter and 2000 in the summer. I haven't noticed any difference in the joint pain with the D3. My IBD is in remission thanks mainly to medication and exercise. Working out helps my hip pain, but particularly when it's bitterly cold or when it snows, it just aches and there's not much I can do. Sports creams, tylenol and my heating pad help a little bit, but I'm going to see a rheumy about it because it's beyond the scope of me self-treating it at this point.
Click to expand...

I see one now, she put me on Savella for Fibromyalgia which you may have too. I am just today on full dose and it is making me nauseous!!! But I could stand to lose some weight, so maybe I won't eat as much. Try 10,000 IU. of D3 a day for a month and see how you feel. It really made the difference for me in joint pain. My thumb areas were so bad, not kidding. Elbows too. Savella is supposed to help arthritis too. So far the D3 seems to be.
 
I'm feeling so ill today. I woke up this morning and I felt like I was choking. I ran to the bathroom and started spitting out blood. I've had it happen before, while awake, but never woke choking like this. Usually I see sores on my gums, causing bleeding, but today, I couldn't see where it was coming from. On top of this, I have so much pain and nausea.

Does anyone have problems with gum bleeding?

I really hate this!
 
Cassy said:
I'm feeling so ill today. I woke up this morning and I felt like I was choking. I ran to the bathroom and started spitting out blood. I've had it happen before, while awake, but never woke choking like this. Usually I see sores on my gums, causing bleeding, but today, I couldn't see where it was coming from. On top of this, I have so much pain and nausea.

Does anyone have problems with gum bleeding?

I really hate this!
Click to expand...

No I don't and that sounds like something you should get checked right away! Bleeding could be from your stomach, maybe an ulcer. So plz call in the morning and tell your Dr. They will make an appt. for you soon! OK?:ghug:
 
Hi everyone

I'm pretty new to the forum so just wanted to introduce myself and leave a message of support for all of you, especially those facing the frustrations of being undiagnosed.

You have given me lots of useful information :) Best wishes to all xx
 
Catty_1987 said:
Hi everyone

I'm pretty new to the forum so just wanted to introduce myself and leave a message of support for all of you, especially those facing the frustrations of being undiagnosed.

You have given me lots of useful information :) Best wishes to all xx
Click to expand...

Thanx catty and welcome here to our forum thread! Are you undiagnosed?
Plz share your story with us.:ghug:
 
Thanks for the welcome!

For me, it started in November last year. I was admitted to hospital with a fever, severe abdominal pain, vomiting and quite bad constipation (which they could see on x-ray). I was kept in overnight and given IV antibiotics and pain relief which made me feel much better. I was discharged the following day having had no tests done, they assumed it was an infection which had cleared up. Since then I have suffered with an array of symptoms:

- Chronic nausea
- General abdo pain and stabbing pains on the right hand side of my abdomen
- Fatigue (probably one of the worst parts)
- Lost about 11lbs (I'm only small and didn't have that to lose!)
- Loss of apetite with insatiable hunger at other times but mainly not wanting to eat
- Diarrhea and constipation. The diarrhea was worse when it first kicked off but now it's mainly constipation

I've got an endoscopy and colonoscopy (on the same day! EEK!) at the end of April. The GI I've been referred to wants to check for Crohn's or Colitis...yay.

So I've gone from being a healthy 25 year old woman, to a sickly invalid! On top of it all I'm planning my wedding and honeymoon for July and I am so frightened that I'm going to be ill for it. Fingers crossed I will be sorted by then. I'm very lucky, my fiance has the patience of a saint and still wants to marry me in spite of me spending most of the past few months curled up in a 'feeling sorry for myself' ball, so that's a bonus :) x
 
Cassy, I agree, definitely call your doctor about this. I have never woken up spitting out blood, that sounds awful! If it gets worse or doesn't improve, please get yourself to the ER. Bleeding is serious, particularly if you can't identify the source! Big hugs and I hope you're okay, please update us later and let us know if you went to the doctor or what is going on. Hang in there and feel better!

Catty, welcome to the club. It sounds scary to have a colonoscocpy and endoscopy on the same day, but that's pretty standard procedure. That way they only have to give you sedation once instead of twice. Good luck with it - I hope the scopes get you some answers so that you can get some treatment & relief. I'm very glad to hear you have a supportive fiance, having good support through something like this is so important. Have you had any tests done yet? Even things like bloodwork and stool samples can look for things like bacteria & parasites, and they can check your blood to see if you have high inflammatory markers or if your vitamin levels are out of whack. Good luck with the scopes and keep us posted on how that goes!
 
Thank you Cat-a-Tonic :) Yes I've had all sorts of tests, blood and stool. I don't know exactly everything they have tested for but they didn't find anything unusual apart from raised glucose and a slightly raised liver function. Luckily, the raised glucose turned out not to be diabetes...phew. The stool test was more recent and I don't have those results yet. I officially feel like a pin cushion after all the tests...as I'm sure everyone on here does!
 
Hi Catty

Raised liver function can mean a lot of things, don't let them dismiss you. It can be part of IBD. For me it is presumed it is autoimmune (transaminitis and positive AMA) but no one really knows.

Do you know what stool tests they have done?

Cassy, are you spitting out blood from your gums or are you actually coughing/vomiting it up? I know when I was sick in hospital I would consistently bleed from my mouth. My dentist said it was the stress on my body and being run down, which makes sense. You generally shouldn't be getting a lot of blood from ulceration in the mouth.
 
I've had raised liver function several times. Have any of y'all had gallbladder issues? Within six months of first major attack I developed a huge gallstone and had to have gallbladder removed.
 
Hi lsgs

I have had sores in the past, but sometimes, like that morning, I am not sure where it's coming from. Just from the gums? The dentist I see has told me in the last that my physician needs to know, that it looked as if I "had something going on". When I told my physician, he just shrugged his shoulders.

Some days I will be working and it just starts bleeding, I think from my gums. That morning I awoke choking, and I'm assuming it was my gums. It just seemed like a lot.

Thanks

Cassy



lsgs said:
Hi Catty

Raised liver function can mean a lot of things, don't let them dismiss you. It can be part of IBD. For me it is presumed it is autoimmune (transaminitis and positive AMA) but no one really knows.

Do you know what stool tests they have done?

Cassy, are you spitting out blood from your gums or are you actually coughing/vomiting it up? I know when I was sick in hospital I would consistently bleed from my mouth. My dentist said it was the stress on my body and being run down, which makes sense. You generally shouldn't be getting a lot of blood from ulceration in the mouth.
Click to expand...
 
Eugh whatever this disease is it's freakin miserable. Started bleeding again, crippling abdo pain, my joints are on fire, I've got all the wonderful side effects of the steroids again since my rheum bumped them up again. I want to go walk the dog and stuff but I'm too scared to in case I get the pain when I'm out. Hitting the dihydrocodeine hard this morning!!

I went to see my GP and he said he didn't agree with the rheumatologist, that I should be on azathioprine and keeping the steroids in reserve for flares which makes sense. I've asked to be referred to another GI (who my GP says deals with unusual cases) and hopefully can go from there. Sick of yo-yoing on steroids and getting sick again.

Sorry for the moan just totally fed up :(
 
Isgs, the GI said he wanted to test my stool for infection, whatever that means. I'm new to all of this so I'm sure I will pick up more knowledge along the way. I'm sorry you are not feeling well at the moment *hugs*
 
Cassy - that sounds awful. I know that your gums can bleed when you are very run down. It sounds as if your physician needs to improve his bedside manner!
 
Catty_1987 said:
Isgs, the GI said he wanted to test my stool for infection, whatever that means. I'm new to all of this so I'm sure I will pick up more knowledge along the way. I'm sorry you are not feeling well at the moment *hugs*
Click to expand...

I would ask for a faecal calprotectin test. I keep banging on about this because of the experiences I've had with it but it measures if there is any inflammation in your gut, and it's so easy to do and keep track of. It has shown up IBD inflammation in me with normal scans.
 
lsgs said:
I would ask for a faecal calprotectin test. I keep banging on about this because of the experiences I've had with it but it measures if there is any inflammation in your gut, and it's so easy to do and keep track of. It has shown up IBD inflammation in me with normal scans.
Click to expand...

See, I don't understand that. If it shows IBD in your stool then why couldn't they find it when they scoped you? That's like when I had my first attack mine was so bad that i had almost a complete blockage. The radiologist even said that it was indicative of crohns. Then they scope me both ways and find nothing. Even 9 months later when they did a scan my ileum is still somewhat inflamed and the glands around are swollen. When I went to my second gi dr they did some kind of test on me, I can't remember the name of it but it checked your DNA for antibodies of crohns. Of course they said it was fool proof if it comes back negative I don't have crohns. I did some research on that test and found that it had a lot of variances in it. Of course it came negative. So here I am "with chronic IBS". But I can say my gums have never bleed. That sounds horrible. I have had a few sores on my gums and one on the outside of my lip, but not bleeding. I've read also that it can cause gallstones. Has anyone ever had gallbladder issues?
 
MS Jason,
Yes. My first GI told me almost everyone with crohns gets gall stones! The gall of him! LOL. I have a huge gall stone. It has something to do with liver function. From crohn's.
If I had bleeding gums, I would take vit c in a liquid form so you absorb it.
 
T, have you ever heard of ESTER C, it's all I can take because of my adverse reaction to ascorbic acid. It's very gentle on the tummmy yet is more absorbed.
 
I had the ct Enterography this morning. It was horrible! It was nauseating and afterward I had the worst diarrhea. Ya, no fun at All!

C
 
Cassy said:
I had the ct Enterography this morning. It was horrible! It was nauseating and afterward I had the worst diarrhea. Ya, no fun at All!

C
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Those are bad. They make me so sick. Next time take some zofran and it want bother you quite as bad. When I had the last one done the tech couldn't get a vein for the iv. I'm fair complected and my veins are very difficult to get and by the time they finally got one I ad to drink more gung. I feel for you. When do you get results?
 
I hear you, Cassy. The contrast for my CT went right through me, I nearly didn't make it home in time and had to run to the bathroom as soon as I was in the door! Not fun. I also had a weird reaction to the MRI injected contrast, it made me super dizzy and I almost passed out. The MRI techs were happy though, because they told me that most people who have a reaction to the contrast will vomit in the machine. I didn't vomit so they were very pleased with me, ha ha. Anyway, I can totally relate to having a bad time with the contrast. Once it's out of your system, you should feel better. When do you get the CT results? I hope the results are worthwhile and that you can get some type of answers out of this bad experience. Hang in there!
 
Hi cat,

I didn't make it home, I had to stop on the way. The rest of the evening last night was painful and I feel crampy today also.

I just looked at my calendar and realized I do not have a followup with the gastro. I do have my colonoscopy sched for 4/1. I wish that they could figure out what's happening though. This has gone on for so long and other than help with pain, they cannot fix what we don't know is wrong. I am sorry to be such a downer, but I'm sure you and everyone here know how this feels.

Take care,
Cassy:ghug:

Cat-a-Tonic said:
I hear you, Cassy. The contrast for my CT went right through me, I nearly didn't make it home in time and had to run to the bathroom as soon as I was in the door! Not fun. I also had a weird reaction to the MRI injected contrast, it made me super dizzy and I almost passed out. The MRI techs were happy though, because they told me that most people who have a reaction to the contrast will vomit in the machine. I didn't vomit so they were very pleased with me, ha ha. Anyway, I can totally relate to having a bad time with the contrast. Once it's out of your system, you should feel better. When do you get the CT results? I hope the results are worthwhile and that you can get some type of answers out of this bad experience. Hang in there!
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Ms Jason,

I'm not sure when I will get the results. I'll probably call Monday to set up a followup.

The zofrans a great idea! I have some here so that's not a problem. Next time I'll head directly home too. What a miserable test.

Cassy

QUOTE=MsJason31;619508]Those are bad. They make me so sick. Next time take some zofran and it want bother you quite as bad. When I had the last one done the tech couldn't get a vein for the iv. I'm fair complected and my veins are very difficult to get and by the time they finally got one I ad to drink more gung. I feel for you. When do you get results?[/QUOTE]
 
Cassy, I totally understand - I've been ill for over 3 years now myself with no concrete answers and really no light at the end of the tunnel. I'm lucky that my doctors feel that I must have some form of IBD and are treating me as such, but I'm still officially undiagnosed as nothing definitive ever showed up on any test that I've had. Because my doctors are treating me appropriately with IBD meds, I'm in remission, so it doesn't make sense for me to have a lot of tests right now. So as a result, I'm stuck in diagnostic limbo indefinitely. I'm not complaining, I'd rather be in remission than ill, but I also would like a name for the monster so that I can attack it better whenever it wakes up again, you know?

Is your GI doing the colonoscopy himself? My GI does all of my scopes himself (I think he's a bit of a perfectionist/control freak!) and he always talks to me right afterwards, so I at least get to hear his thoughts & if he found anything, without having to wait for a follow-up. The one issue I've had with that though is that the sedation they give you for the scope temporarily makes you lose your short-term memory. So when I had my first upper endoscopy, my GI apparently talked to me for like 10 minutes afterwards, but I don't remember any of it. I have a vague memory of putting my shoes on and being driven home, and then I complained to my hubby that Dr. S didn't even talk to me. Hubby was like, "Yeah he did, for like 10 minutes, and you seemed lucid! How can you not remember that?" But I don't remember any of it. So yeah, the sedative is powerful stuff. After that experience, I told my GI about it and stressed to him that he needs to make absolutely sure that I can remember stuff before he comes and talks to me after scopes. He's been good about that and I remember everything he said after my most recent scope about 4 months ago. Anyway, I'm rambling on again, but if your doc talks to you right after the scope, they may impart some important info to you and you may not remember, so make sure they know that you should be lucid, and maybe even have them write things down. Or if you have a recording device (on your phone maybe? I don't have a smartphone but I think phones do that now?) maybe record what they say. Just don't forget that you recorded it!
 
Cat, thanks so much. Your advise is right on mark, and I will have hubby write down info in case. I'm sorry they can't pinpoint fir you either, but it's great that you are in remission. I did find my appt. follow up for 5/16?! That's way to far ahead, so I'm calling for one in April. It's ridiculous lot keep dragging this on.

Take care,
C
 
Yeah, the "hurry up and wait" cliche is alive and well in the American medical system, that's for sure. I'm in the same boat, my GP put in an order for me to be referred to a rheumatologist for my arthritis (the IBD is in remission, but the arthrits and GERD are fairly active lately). My GP warned me that it would take about 2 weeks for the referral to go through and then probably at least 2 or 3 months for the actual appointment. It's been 2 weeks and I'm still waiting to hear back on the referral. I probably won't see an actual rheumy until the summer at this rate. It's getting ridiculous. Maybe I'll just push back the appointment until next winter as my arthritis is most active when it's cold/snowy. :p
 
I've been seeing one for 6 months now and all they do is put you on antidepressants that are supposed to help. I am now on Savella. A new one. Ankles are swollen which is not good. Calling on Monday.
 
Cassy said:
I had the ct Enterography this morning. It was horrible! It was nauseating and afterward I had the worst diarrhea. Ya, no fun at All!

C
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Really sorry that happened :( I remember I had the MR enterography and for that they strap you into the machine so you don't move. I was panicking the entire time thinking I was gonna spew over the machine and I couldn't move. It was the worst test I've ever had.

I'm waiting on an MR enterclysis and not looking forward to it, particularly as they want to give me it through a tube in my nose rather than drinking it! :eek:
 
I had a double MRI last Thursday. Strapped in with huge magnets around me and under me. An hour and a half! Banging etc.... Then contrast in my veins as well holding my breath off and on the whole time. I swore, never again! 4 yr. cancer checkup! NO more!
 
Hi. My name is Amanda and my aggravation started after I was admitted to the hospital through the ER and was there for 5 days. I came in with the most unbearable pain that I have ever been in and vomiting. They gave me a separate room in the waiting room, off of the ER bc I was screaming and crying. They did a cat scan, I believe, and two ER Dr's came in and said that they were pretty darn sure that I have Crohn's and as soon as I am able to be put on Prednisone that I would feel "cured." Sure enough, that's exactly what happened. Well, then I met the GI who turned out to be a total D-Bag. He made it clear to me that he did not believe me and had NO idea why the Prednisone worked. *ASS* OF COURSE, all of my darn tests, after that initial cat scan, came back normal and after the 5th day, I left without a proper diagnosis. MAJOR LETDOWN!!! Since then I have continuously seen my general practice Dr, who though I feel is a very compassionate and understanding man and an otherwise awesome doc, has no freaking clue about Crohns. I don't have insurance so I am more or less stuck. He has agreed that its Crohns and to put me on the medicine for it due to how sick I am everyday of my life (it is completely debilitating at times.) But here I am, stuck in this LIMBO of being sick as a dog and having all the signs and symptoms of Crohn's but not being able to get a diagnosis bc it isn't showing up ANYWHERE except as inflammation in my Terminal Illium. WHY IS THAT AND ALL OF MY SYMPTOMS NOT ENOUGH FOR A PROPER DIAGNOSIS????? I'm sick, darn it! Help me! I understand that a diagnosis won't necessarily do anything for me, but it will be able to give me a name for these debilitating symptoms that I have EVERY day of my life! It won't just be "Amanda the hypochondriac or the girl that's always sick... for whatever reason." or my favorite, "Oh she's just lazy and/or looking for attention." No, I want to be able to say, "I am sick bc I have Crohn's. I am not a hypochondriac and I am not lazy or looking for attention. I have a debilitating disease."

Rant over! Thanks for listening.
 
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Hi Amanda welcome to this thread on the forum. Before I start, plz can you fix the size of your letters to the normal size. It comes on the screen so huge and takes up the whole page.
It is possible to have crohn's in just your terminal ileum. Many people on here have it there and mine when diagnosed in 2011 was in term. ileum, although two small ulcers were next to it in upper colon. I have since been told I have IBS, not crohn's. So again common on here. Although I know what I feel. So,
best thing to do is not let the Drs. make you feel bad or make you feel like a hypocondriac. Are you takind Vit. D3 and fishoil? Also Magnesium citrate is very beneficial. As others suggest, you could try the low residue diet or SCD diet. Look it up on here or they have a website with what you can and can't eat. I did it for awhile and it worked for me. I am doing alot better right now. Just bad gas and pains sometimes in abdomen. So look at all the threads on this forum. Many have great info that can only help you!!!! OK? Hugs to you! Teresa:ghug:
 
Cassy said:
I'm feeling so ill today. I woke up this morning and I felt like I was choking. I ran to the bathroom and started spitting out blood. I've had it happen before, while awake, but never woke choking like this. Usually I see sores on my gums, causing bleeding, but today, I couldn't see where it was coming from. On top of this, I have so much pain and nausea.

Does anyone have problems with gum bleeding?

I really hate this!
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I have read that Crohns ulcers can appear anywhere from mouth to anus. I wonder if you have them in our esophageal area? I agree you should get checked out for sure!!
 
723crossroads said:
MS Jason,
Yes. My first GI told me almost everyone with crohns gets gall stones! The gall of him! LOL. I have a huge gall stone. It has something to do with liver function. From crohn's.
If I had bleeding gums, I would take vit c in a liquid form so you absorb it.
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They took my gallbladder with stones out when I had my resection. I feel much better with it GONE.
 
Good morning everyone! I'm wondering if anyone has had dreams about having lots of pain and bad D and then woke up to it being true? I took 2 Benadryl last night and had dreams all night of that but never fully woke up until this morning and it became reality :( I had a follow up recently with a GP who told me she didnt think it was ibs (yay!) and that it was definitely something but she didn't know what. I'm going on year 2 with this whatever it is and getting back to the frustrated/down/not sure what to do next stage. Are any of you on any meds that have helped/doctors that have tried prednisone just to see if it will work? How did you go about asking the doctors what can be tried?
 
I would ask that we could always remember Kurt Cobain on this board. I have read a lot about him. He searched for a diagnosis for years for unbearable stomach pain. He was only give labels like 'ADD' and 'Bipolar.' In his suicide note, he wrote, 'I thank you from the bottom of my burning, nauseous stomach.'
 
Sparkle

I have not had the other docs say anything about ulcers in my esophagus but an excellent question. I will ask when I'm at my appt next.

On a side note, love your tongue in cheek comment of "drs said no crohns as your chubby". I've been sick for 5 years and I am betting also, this is why jobody questioned crohns with me.

Increasingly frustrated with the more I learn with this disease.

Cassy

Sparkle2012 said:
I have read that Crohns ulcers can appear anywhere from mouth to anus. I wonder if you have them in our esophageal area? I agree you should get checked out for sure!!
Click to expand...
 
I so understand. That was the first thing out of my sister's mouth. You are too chubby to have crohn's because one person she knew had it and quit eating because she would get so sick. So my sister assumes all people with crohn's are painfully thin. I have a friend at church who has had crohn's for 25 yrs. She has only 6 inches of intestine left from all the surgeries and she has not lost any weight she told me. So there!!!:lol2:To all you who think you know it all!
Humira was what finally got her into remission.
 

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