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Also - the SBBO test - that one my doctors did say I'd have to go to another hospital for, but they also said it can be diagnosed by a trial of antibiotics - if symptoms improve with antibiotics, it confirms the diagnosis. (I ended up taking a lot of antibiotics for another problem, and since my digestion did not improve, they concluded SBBO was not an issue, which was also what I thought anyway, and I never did the test.)

Faecal calprotectin - I'm not certain if they'd include it in regular stool tests, but I know when I had one, they just took a sample of my stoma output the same as they do for other stool tests, so you probably wouldn't know if you'd had the test before without than actually telling you they were doing it. And some doctors don't keep us informed of all that much, so who knows. :p
 
Thanks so much for your replies. You are quite right that it's a possibility that I have had that tested for in my stool but I think it unlikely. My results have always been presented to me as "you have no infection/bacteria" and i've had the test envelopes/tubes given to me by GP then taken direct to the Hospital lab myself, and I do not recall that test written on them. I've had 3 or more likely 2 the whole time i've been sick so not many to keep track of.

I am a member of a lift share site for local Hospital, which is worse than useless, in many years and many appointments there was only ever one potential match once (who never replied to my messages). I can look for one for the other Hospital though I hadn't thought of that.

Thought overnight about the SBBO test and still very unhappy. I may refuse and withdraw my consent. If it becomes necessary (as the MRI will if my stool test shows a problem) down the line I will consider it but for now I am not willing to put myself through it. I had it about 4 years ago and it was negative. Why would it now suddenly be the reason for my illness? Clearly something has changed from then because the anaemia and b12 have only been a problem this pat 6 months. Do I think it's because of SBBO suddenly? No I do not and right now not willing to go through a traumatic test which I view as pointless.
 
I always turn down tests if I don't want them. I turned down a pill cam because I was worried it could block my stoma, plus the doctors ordering it said they didn't think it would provide much more information than what they'd already got from endoscopy and MRI and they were just doing it to be thorough, plus it takes a whole day, with restrictions on what/when you can eat, etc.

There are no rules saying which tests you have, and your priorities may differ from your doctors' (e.g. my doctors didn't care about blocking my stoma, but I did!) and it's your decision to make. The worst they could do is to refuse alternative/future tests, but in practice, in my experience, they don't do this. If you want more tests later on, they're not gong to refuse if there's a valid reason for them. I've never even found it much of an etiquette issue - I just call and cancel the appointment or test, or tell the doctors not to order it in the first place, and if they do ask me why, I tell them my reasons. It really isn't a big deal.
 
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A lot of interesting information from reading your posts, Star Grrl and UnXmas. Things to think about with my own appointment coming up this Thursday. I do find it interesting that in all these years I've been seeing docs about my issues, I've never once had a stool sample tested. My sis has colitis and she was baffled about this also. No fecal tests, ever, for me. My last colonoscopy was in August of 2013, the doc said was clear, but he did find one precancerous polyp. My symptoms have gotten a lot worse since then, and the NP that I saw in the beginning Jan said she didn't think another scope would be warranted yet since that one was clear - I guess I don't know, honestly. I'll see what this doc says. I did have an EGD in March of last year that showed some esophageal sloughing that the doc i saw at that time said he wasn't concerned about. With all the increased nausea, pain, diarrhea I'm having now and the weight I've lost over the last year I just don't understand why I can't get a doc to be concerned about any of it. All I've been told so far is that my bloodwork looks fine so everything else must be fine.
 
Which doctor will your appointment be with, mccindy?

I don't know why it is that so many doctors can't get their heads round the fact that people can have horrendous symptoms even though some test results come back negative. I hope your next appointment is more useful.

It does seem a bit unusual that you've never had a stool test. But I know sometimes stool tests are, along with blood tests, done early on, and the results are used to make a decision about whether to continue with more invasive tests. Stool tests don't usually provide much specific information; they can show if there's blood, inflammation markers, etc., but not the cause or location of the problem. (An exception to this may be detecting parasites, which I don't know about as I don't think it was ever considered a likely problem for me.) Maybe for some reason you skipped some of the initial tests and went straight to thorough tests like colonoscopies?

Also, in my case, almost all the stool tests I've had have been done when I was an in-patient in hospital. Possibly some doctors assume patients won't like having to collect the samples and bring them in? It may also be difficult for people to take them to the doctor right away, there are hygiene issues if the patient has to store the sample until they can take it to the doctor, and samples can get contaminated by urine, menstrual blood, etc. which can interfere with the test results. It's much easier to do them when people are in-patients, and I think I've only done one or maybe two outside of hospital, but probably about a dozen when in hospital.
 
I agree about stool tests mainly being done very early on in the diagnostic process. When I first got sick, they did a bunch of bloodwork (so much that I got woozy from loss of blood!) and about 6 different stool tests. I seem to recall that they were testing my stool for things like bacterial infections and parasites, mainly just to rule those things out before going further with the more invasive tests.

The only other time that I had stool tests was when I first started passing blood in my stool - I wasn't a bleeder up until about year 3 or so of my presumed IBD, so again they wanted to do stool tests to rule out things like salmonella before doing another colonoscopy to determine the source of the bleed (it turned out to be internal hemorrhoids). As far as I can recall, those are the only stool tests I've ever had to do, just when I first got sick and when I first started bleeding, that's it.
 
Dropped off my sample today, now for the fun waiting game for results. I think it was a good time to do one. Had one of those weeks where no matter how careful I am, my guts just play anyway. D every night and the pain my goodness :(

Now I will wait to hear from GI with blood and stool results, and whether they will be doing an MRI or not. Not had the appointment for breath test yet but pretty sure I am going to refuse.
 
Hello :) How is everyone doing?

I am still nervously awaiting my results, hopefully something will arrive this coming week.

Some days I am sure it will find something, how can it not when i'm this ill, on other days I am despondent and not hopeful because I have had so many normal tests, including recently.

One thing I do know, whatever I do have, is either very rare or a case of CD which is good at hiding in an unusual spot!
 
Hello Star can understand feeling let down by the normal tests and even the tests that show something the doc's just say well don't worry
 
Just got an appointment for another colonoscopy for 26 Feb. This one will be number 3!! I am hoping in a way it will be third time lucky. I am convinced that something inflammatory is going on (Gi less convinced). Symptoms starting to increase in last couple of months, in November last year blood tests showed low iron, increased crp and esr. I don't want to have crohns, but if it is there I want to find it!! I also have arthritis that has been flaring a bit.
 
I wish to get better my niece sent me the vid and it's not like I've never heard all that before but makes it sound easy to get better,I want a life with Ella and this illness or condition whatever you call it isn't making things easy
 
Bone broth and factoring in some genetic things might help. I've been doing some research into that since I was sick with it and fixed it. It turns out that I'm not making enough intrinsic factor for one. So you have to bypass that and get some of the things you need for building blocks into your system. Next was liver and pancreas problems, not making the proper enzymes and amino acid combinations, and the fact that my liver is a mutant and changes things around. So you have to take that into consideration when deciding on the proper diet. Since I can't seem to process fats very well, and I'm missing the ability to manufacture glutathione, and I switch any cysteine in my body over to arginine. So, part of the fix was to lower any foods containing arginine, since I get enough of that from everything. Get rid of things that don't process, which was for me the fats I can't process. And take the right supplements and medications to heal the lining of the small intestines, and the large intestines. Sometimes that includes fasting days to let it heal, with water and vitamins as the only nutrition source. Now I no longer have indigestion, my stools have become very normal, and my usual colic with gut pain have stopped. I am taking a combination of homocysteine supportive supplements, a liver supplement, glutathione, NAC, 5-Methylfolate and B vitamins, with an exra B12. Bone broth supplies my collagen and gelatin fats, with quite a few minerals. No more pork, no more fish. Lots of vegetables. No potatoe, no tomatoe. Stay away from sugar, fructose forms, and acids of all kinds. It is an anti-inflammatory diet with some modifications. I have positive Crohn's markers and autoimmune markers all through my DNA testing. But now I don't have to take any of those medications. So there is a way, but it is partially knowing your labs, partially knowing your weak spots through DNA testing, partially living in a very careful way with the right diet. No fruit, no fruit juices, no soda, no restaurants. Light proteins like chicken or grass fed beef, lamb, etc. Dairy is fine if it is not processed. Eggs are great if you can take sulphur items. But in order to figure that out, you need good lab testing and good DNA testing, supplements, proper diet, exercise, medicines.
 
Ah things really rough here :(

Fatigue was super bad last week but slowly improved.

Then had a bowel flare up Sunday which hasn't yet righted itself- D not too bad but appetite is poor so I am not pushing it.

Kept awake until 5am this morning with severe abdominal pain, if the stool test is normal for inflammation I do not know what the heck to do. That was intestinal pain for sure.
 
What would you say is a good breakfast that doesn't consist of milk or cereal or bread and is easy to prepare
 
I have cut sugar and fizzy drinks and juices out also potato's and tomatoes give me gerd.Drink black tea or black ground coffee with honey water and carrot juice
 
Here's an update on my situation. So, I've been battling this since the beginning of October. I've had multiple blood tests, colonoscopy, capsule endoscopy, fecal tests, physical exams, CT scans...you name it, I've had it.

I was getting no definitive answers, other than I have some form of colitis. My first CT scan from the ER showed active inflammation. My colonosocopy showed nodules or enlarged lymphnodes at my terminal ileum. My pathology report from my colonoscopy showed active colitis, healing ulcers, and scaring in my large intestine.

Recently I've had an increase in mucus and bloody mucus during bowel movements or when passing gas. I've also developed a fistula near my anus. After my doctor discovered the fistula, he decided to try another test to look for Crohn's.

Two weeks ago my Dr. ordered the Prometheus Crohn's Prognostic Blood Test. It was sent off to their lab in San Diego.

I received the test results yesterday. It was positive for Crohn's. So, I guess I finally have an answer. I am scheduled for a follow up appointment to plan long term treatment.
 
Hi CWT, fistulas usually mean Crohn's so it sounds to me like you got the right diagnosis. Congrats and condolences on having Crohn's - it sucks that you have Crohn's but at least now you have a name for the monster and can fight it more effectively. I hope you and your doctor can figure out a good treatment plan and that you can get to feeling much better for a long time.

Ellazmeanie, I really like scrambled eggs for breakfast. They're easy to prepare and don't hurt my tummy. They're high in protein, and you can avoid most of the cholesterol if you remove the yolks and just do the whites. I hope that helps!

Star, I hope you're doing better this week? When do you get the stool test results back?

I'm sorry to everyone that I haven't been around a lot lately. Work was absolutely insane the past couple of weeks. We had some huge meetings at work that I had to help out at and that was terribly stressful. I ended up with 2 migraines (one just before the meetings and one just after). Things are slowly getting back to normal but now we're planning for another big work event next month so I can't totally de-stress. I'm also still getting over the flu - it's been nearly 8 weeks and I'm still coughing a bit, it just won't go away! So between the stress and the flu I haven't been super great. I'm hoping to get back to normal-ish now that there's a bit of a lull at work and the flu seems to finally be mostly gone.
 
Thank you catty one will try the egg breakfast minus bread and ordered some bones from abel n cole to make broth going to try and eat as bland as I can manage for a while and take the supplements and vitamins give my guts a rest,trying to walk a little further instead of catching the bus.
 
Just had colonoscopy #3. This one actually found stuff!! Patches of mild inflammation and erythema in sigmoid colon and two polyps in ascending colon. Routine biopsies also taken from terminal ileum.

Been symptomatic with diarrhoea/abdominal pain for a few years. Raised wbc, crp and esr. Low iron. Was diagnosed with a seronegative spondyloarthrits last year too.

First two colonoscopies were normal and pillcam 3-4 years ago.
Have to wait for biopsy results to see if I get a crohns diagnosis out of this or not.
 
Hey how's everyone doing? Haven't dropped by in a while. Feel kinda bad because I'm only here because I'm having a tiny flare at the moment. I try not to focus too much on the disease when I have my symptoms under control.

Hope you're all doing well and some of the oldies from this sub-forum have a diagnosis!
 
Hi Lewis, sorry to hear you're flaring! I hope it gets under control quickly. I'm in sort of the same boat, I don't think I'm flaring but the other day I made my guts really angry/irritated because I stupidly ate fiber. You know that shredded wheat/mini wheats cereal? In a moment of madness, I thought maybe I could get away with eating a bowl of that stuff. It's high fiber and whole grain. So yeah, I definitely did not get away with it, and I'm on day 2 of having blood in my stool because of it (it'd been just about a year since the last time I passed blood). I'm pretty mad at myself for being so stupid and thinking I could eat that cereal. I'm definitely paying for it and I hope I didn't mess things up too badly. There hasn't been a lot of blood, but any blood is worrying to me especially after a full year of no blood. Ugh. Anyway, I hope we both feel better soon!
 
Hi guys, hey Lewis, hey Cat!

Sorry you're flaring Lewis, are you on Humira now? Is it working well otherwise.

I can't remember the last time I posted here but a lot has happened.

Doctors told me I had lymphoma. I went for biopsies and didn't tolerate it very well so had it done under stronger sedation again. They passed a scope down with an ultrasound prone on the end until they could see the node and passed a needle through the gut wall into it. At this point they decided the lump had actually been there for three years but they just missed it on my previous scans? Even though my scan said I had cancer, the fine needle aspirated biopsies didn't. So I'm on a kind of watch and wait thing to make sure it doesn't grow. I've gotten away with it for now but there is still a big question mark over it.

I'm having surgery on the 30th March to remove my gallbladder and take a liver biopsy. I kind of can't wait, I was at hospital last night getting yet another injection. I'm hoping it's going to make a massive difference to my life!! The surgeon said if he sees a lymph node he's going to take it out as well, and hopefully have a look at my guts and see if they see anything.

Like you cat I'm suffering because of my food choices! I decided to try to lose my pred weight and tried Slimming World diet and yes I've lost weight but my guts are realiy sore so I'm off it, not sure if it's all the fibre and fruit/raw veggies!

Good to check in with you guys :D
 
Like you both, I struggle with my diet/lifestyle choices too. I'd probably not be in the situation I am if I stuck to a better diet. I've been put on budesonide for 12 weeks! It's not a major flare so I refused pred. It really doesn't sit well with me.

Bloody hell Isgs, you really are going through it! You're being so strong too which I think is really important when facing a potential cancer diagnosis. Lets hope nothing more comes of the growth and it ends up being benign.

What a life we all lead. Hopefully those MAP vaccine trials go to plan next year...
 
lsgs, how awful - it sounds to me like they've just been telling you, "You've got cancer! No you don't! Yes you do! No you don't... maybe!" I wish you luck on the 30th and I hope it gets you some definitive answers and relief. Please keep us posted on how it goes! I'll be thinking of you!

Lewis, I was on budesonide for most of 2014. It's not too bad (definitely not as harsh as pred). You may still experience some side effects (I get headaches from it) but they should be nowhere near as bad or as strong (or as many!) side effects as pred. Good luck, I hope it blitzes this flare so that you can get back to remission!

And yeah, bad food choices, I'm not sure what I was thinking eating that cereal as that was a really bad one. Fortunately the bleeding seems to have stopped and I'm feeling mostly better. My pattern seems to be like this - I feel well for a number of days, I do just fine eating my usual safe foods and I get a bit bored with that and I get over-confident about my ability to eat un-safe foods. It's like, hey, I've been feeling good for a week, so maybe I'm doing so well that I can get away with eating fiber/salad/nuts/coconut/whatever! But I'm like, no, I shouldn't eat that because I know it's unsafe. But by then I've got the food in my head, so then I spend a week or two fantasizing about salad or whatever. In my head it's so delicious and I don't get sick from it. So after about a week of that, I finally cave and eat the unsafe thing and then spend a few days hating myself for it. Then I slowly start to feel better, and the cycle repeats itself. :p It's awful and I know I do this, but I just can't seem to stop doing it. Every single time I get so over-confident and obsess so much about the food. I had actually been thinking about that cereal for months. And there's a little café that I sometimes sneak off to to have a salad, it's like I'm being naughty and can't tell anyone when I go there. It's almost like an eating disorder, it's like salads are my secret addiction! How sad is that!
 
Hey everyone!
I'm new on these forums, undiagnosed GI problems that are basically putting my entire life on hold.

How does one go about joining this lil group? :)
 
Hey everyone!
I'm new on these forums, undiagnosed GI problems that are basically putting my entire life on hold.

How does one go about joining this lil group? :)

You're in! Welcome to the undiagnosed club although I'm sorry you've had to join

Tell us a bit about your story if you want!


Lewis - My problem is the total opposite, if I eat healthily I flare up. I have a reasonably healthy diet but there's no doubt that I could eat a McDonalds and be fine, but a couple of apples will cause me problems. Weird.

So far they are calling it reactive (reactive to what? The easy answer is sjogren's syndrome but my rheumatologist disagrees. The only other illness they see this in is... drum roll.... crohns!) but I would rather they excised a full node. Loads of folk have been told they didn't have lymphoma when fine needle biopsies just aren't accurate. They later have surgery and they get diagnosed. But I kind of have to go with what they are saying. I just really hope the surgeon manages to get one when he's rooting around in my abdomen at the end of the month!

Now when I go to the doctors I've been upgraded to 'suspected crohns'. Some doctors acknowledge this, others don't. :ybatty:
 
You're in! Welcome to the undiagnosed club although I'm sorry you've had to join

Tell us a bit about your story if you want!

Thanks!

Well I started having problems about 10 weeks ago. Sharp stomach pains that I mistook for chest pains. Went to the doc, got a positive occult blood test. They suspected an ulcer at first, I ended up in the ER with horrible pains and anemia. The anemia resolved itself and when the gastro didn't show anything the doctors insisted I was fine.

I have a history of anxiety problems as a child, something the doctors love to bring up as a reason to not take me seriously.

It's gotten way worse during these 10 weeks too. Fatigue, pain in a very specific spot near my left side ribs, a burning sensation in my entire digestive system, frequent BMs (like 15+ times a day of mucusy mess), occasional constipation. Right now I can't eat solids anymore, and within 10-15 minutes of any meal, solid or otherwise, I get these absurd episodes of extreme belching for 2-3 hours.

Had to get very angry over the phone today until FINALLY they scheduled me for a colonoscopy next Wednesday. Terrified that they won't find anything and I'll have to keep feeling like this for several months more...

Right now I feel like an IBD diagnosis would be a relief. Though I probaby won't think that if I end up getting one and have some time to let it sink in.
The anxious part of my brain likes to make me think I have a terminal illness or cancer or something equally horrifying. But so far I've managed to keep pretty calm and just waiting for answers.
 
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Thanks!

Well I started having problems about 10 weeks ago. Sharp stomach pains that I mistook for chest pains. Went to the doc, got a positive occult blood test. They suspected an ulcer at first, I ended up in the ER with horrible pains and anemia. The anemia resolved itself and when the gastro didn't show anything the doctors insisted I was fine.

I have a history of anxiety problems as a child, something the doctors love to bring up as a reason to not take me seriously.

It's gotten way worse during these 10 weeks too. Fatigue, pain in a very specific spot near my left side ribs, a burning sensation in my entire digestive system, frequent BMs (like 15+ times a day of mucusy mess), occasional constipation. Right now I can't eat solids anymore, and within 10-15 minutes of any meal, solid or otherwise, I get these absurd episodes of extreme belching for 2-3 hours.

Had to get very angry over the phone today until FINALLY they scheduled me for a colonoscopy next Wednesday. Terrified that they won't find anything and I'll have to keep feeling like this for several months more...

Right now I feel like an IBD diagnosis would be a relief. Though I probaby won't think that if I end up getting one and have some time to let it sink in.
The anxious part of my brain likes to make me think I have a terminal illness or cancer or something equally horrifying. But so far I've managed to keep pretty calm and just waiting for answers.

Hi sorry for the late reply. I can't believe they've found blood in the stool but aren't investigating?! That is honestly ludicrous. Is your colonoscopy tomorrow?

I was misdiagnosed with anxiety and it still haunts me to this day even though a psychologist wrote to all my doctors to say it wasn't. It's extremely frustrating so I do sympathise.

A colonoscopy itself will show if there is disease in the large bowel but doesn't really get far (maybe 2 inches) into the small bowel which is 24 feet long. There are other tests for this - MRE, pillcam etc so all is not lost if they don't find anything. Are they doing an endoscopy at the same time?

I would ask for a faecal calprotectin test which is a stool test which shows if there is any inflammation in the gut. It's not diagnostic but a positive result would point to IBD.
 
Hi sorry for the late reply. I can't believe they've found blood in the stool but aren't investigating?! That is honestly ludicrous. Is your colonoscopy tomorrow?

I was misdiagnosed with anxiety and it still haunts me to this day even though a psychologist wrote to all my doctors to say it wasn't. It's extremely frustrating so I do sympathise.

A colonoscopy itself will show if there is disease in the large bowel but doesn't really get far (maybe 2 inches) into the small bowel which is 24 feet long. There are other tests for this - MRE, pillcam etc so all is not lost if they don't find anything. Are they doing an endoscopy at the same time?

I would ask for a faecal calprotectin test which is a stool test which shows if there is any inflammation in the gut. It's not diagnostic but a positive result would point to IBD.

Yupp, tomorrow morning. Am going through the fabulous prep process atm...

Due to the specific area of the pain I think they're pretty convinced it's a colon problem? So if this doesn't show anything they'll be reluctant to do more tests, I bet. I had a really rude doctor in the beginning of all this, and now I've been bounced around between different ones. Which I prefer, right now, to be honest.

I already had an upper endoscopy, because they thought I had an ulcer, but it didn't show anything. My current doctor might want to do one again if the colonoscopy doesn't show anything though, since no one took biopsies during the first one. And the next step after that was a CT, I believe. Though every new test comes with at least a 3 week wait, so it's just taking forever and I keep getting worse...
 
I hope it's ok if I pop in here and vent/whine a little bit. I just need a spot to pour some of this out.

Condensed story -- In Dec of 2013 I had horrific pain in my lower right abdomen and went to the ED where I was surprisingly diagnosed with cecal diverticulitis (just one, right next to the appendix they said) put on a tree of antibiotics and sent home 2 days later. Only to return a week later with a raging case of Cdiff and 4 more days in hospital. I've diarrhea ever since (so, nearly 15 months now?). In April of last year, they were concerned about the D and did a colonoscopy that came back clear -- not even any sign of diverticulum (odd). That GI wrote me off as having IBS, trialed Bentyl (no help) Lomotil (a little help, I think?) but didn't like that long term so took me off it, then trialed amitriptyline (no help) then gave up on me. Along the side, I also have migraines, and recently they decided to try nortriptyline (still no help w/D, not sure it's even helping the head). In the past 15 months I've had repeated bouts of severe pain in my lower right. They've variably put me on antibiotics for suspected diverticulitis, or run CT scans that always come out fine. This last round, I'm vomiting, bad D, etc. I went to a different ED that is closer to my mom's house. They referred me to a new GI, and I saw an NP to start. She thinks they may have missed appendicitis (since no CT since that ONE has shown any diverticula) and that likely lead to adhesions, hence the pain. However, that doesn't explain the D. She said something about microscopic colitis, and wanting biopsies. So, game plan is to have a colonoscopy in 2 weeks, then call a surgeon for a consult re: the appendix/adhesion possibility.

VENT:
I have been out of work since last Thursday, when I left due to vomiting. I am a part time employee who has only been there 3 months. I have no benefits, nothing. I don't know when I'll be well enough to go back. I work in a call center, it's not like I can tell someone "please hold" and then run to the 'loo for 5+ minutes, I'm tied to my desk while I'm taking calls. I've been scared to go in, because just driving my son to school (10 minutes round trip) has me vomiting even with a pre-dose of zofran. I don't know how I'd make the 45 minute drive to work. So I'm considering resigning before I rack up enough absences to be fired. Is that horrible? I hope at least that way I may be eligible for rehire later. Of course apparently call center work is not compatible with gut illness. Thank goodness my husband has a good job with good benefits.

Oh, and for more fun, I'm also a blood clot risk (Factor V Leiden and one spontaneous leg clot) so I get to deal with coming off of Xarelto (a blood thinner) and likely dealing with lovenox shots before the colonoscopy.

~sigh~

Thanks so much for reading this, and letting me whine/vent!!!
 
Wildmtnhoney, I hope the colonoscopy gets you some answers. You probably already know this, but if they're thinking microscopic colitis, make sure they take lots of biopsies. Microscopic colitis can't be seen visually and it also has a skip pattern, meaning the microscopic inflammation is patchy and essentially they have to luck into biopsying the right areas in order to find it. So, the more biopsies they take, the better chance they have of finding it. Good luck! Keep us posted on how it goes.

You mentioned migraines - did you get migraines at all before the digestive troubles came along? I ask because I never used to get migraines, then along came my digestive issues and suddenly I was having regular migraines (fortunately amitriptyline does prevent the majority of my migraines). My doctors have never been able to confirm this, but it seems to me that the migraines and the gut issues must be related somehow since they both came on at the same time. (For what it's worth, I'm also undiagnosed although my doctors are fairly certain I have some form of IBD and my GI seems to think that microscopic colitis could be the culprit for me as well.)
 
Cat - interestingly, I had menstrual related migraines when I was birth-control pills, but those stopped when I stopped the pills (years ago!). Then, when the gut stuff happened, I started getting all sorts of NEW migraines that I'd never had before, and these aren't responding as well so far (but I'm on a low dose, just 30mg of nortriptyline, along w/100mg topamax to try to quell them). So I'm very curious that you say that. My family has been freaking that I'm "falling apart" lately, so if things are related, that's almost better than if it's separate stuff, ya know?
 
Interesting! I also get a couple different kinds of migraines. When my gut troubles came along, the migraines that came with that are the type where I get a freaky visual aura beforehand. Then sensitivity to light & sound (light moreso - I need to be in a dark room when those migraines hit). Not a ton of head pain, some nausea. Those usually go away after a few hours.

The other migraines I get, they seem to mainly be a side effect of medication (particularly Entocort). They are miserable! It starts as sinus pressure and neck stiffness. Then it turns into pain & pressure that wraps around from my forehead down the back of my head and into my neck. Sometimes crying will relieve some of the pressure, and a heating pad on my neck can make it feel somewhat better, but for the most part there's nothing that relieves these migraines. The pain is rather intense and throbbing, and those migraines can last up to 5 days each. When I was last on Entocort, one month I spent 3 weeks in a row with a migraine each week, and all of them were 5 days long - so I would have a migraine, have 2 or 3 days relief, then right back into another migraine. It was extremely miserable.

So yes, the miserable migraines seem to be due largely to medications (and sometimes to stress and/or shifts in the weather), but the aura ones seem like they must be tied in to the gut issues as I never ever had them prior and I wasn't on any medications when they started. Those are the ones that amitriptyline does a fantastic job of preventing - I can't remember the last time I had a migraine with aura, it's probably been 2 or 3 years. The miserable 5-day migraines, unfortunately, are not kept away by amitriptyline so well and I've had those regularly (particularly in 2014 as I was on Entocort most of that year). Yuck.

Yes, I think it's probable that when your health sort of falls apart, it's sensible to presume that at least some of the issues are related, particularly if they all started at or around the same time. I diagnosed with both GERD (chronic acid reflux) and arthritis about a year after my gut issues started, and I'm fairly certain that the gut issues must have contributed there as well.
 
I just thought that I would note for this who are struggling with migraine - there is another option for preventative called sandomigrin or pizotifen it is newer and I think is an antihistamine - it was prescribed be a neurologist but should be able to be prescribed by a GP - though they may not have heard of it. - I had daily migraines similar to what cat-a-tonic described and now rarely get them. Magnesium supplementation has also helped as has watching my sugar intake - there is a thread on here about migraines too which has tips from some people. Also watch for rebound headaches!

I also get visit chiropractor and massage therapist regularly when budget allows which seems to help.
 
Long time no post but I have had a terrible ear infection. 12 days of super strength anti biotics and it still hasn't quite gone, although it is so much better now. At one point I had boils on the inside of my ear :ywow: and it's only now I am better I realise how bad I was, hardly eating, little sleep etc

Sadly no progress on the GI front because despite having my appointment 8 weeks ago it appears I have been forgotten about entirely. :poo: No test results, no test appointments, no letter confirming what was said.... nothing.

I've simply been too ill to deal chasing them the last few weeks.

Sending a letter to my Consultant (I see whichever Registar is on duty as an outpatient, only met the Consultant once, when he discharged me as an in patient) this week.
 
Hugs and happy birthday, Star! I hope you're well enough to enjoy the day at least a little bit. Wow, that ear infection sounds horrible. I'm glad it's improving now. Good luck with tracking down your test results and getting an appointment. (I swear, sometimes it's like a full-time job being sick - you have to keep track of all that stuff, I literally have spreadsheets tracking things like that!)

I've not been so well myself lately. Still having blood in my stool in spite of now being on steroid suppositories. My GI said if the bleeding continued then he's going to do a flexi-sig, so I guess that's next on the agenda for me. Not looking forward to it but at least I won't have to do any prep. I'm guessing the bleeding is from the same cause as last time (internal hemmies and/or fissure) so I'm not expecting to get any answers out of this test, plus I'm not thrilled about having scope stuck in me with no sedation or pain meds, so I'm really not enthusiastic about having a flexi-sig (I've actually never had one before so not 100% sure what to expect but I have a good general idea and it doesn't sound particularly pleasant). So yeah, I'm struggling with that lately. The blood loss is causing low energy and a bit of dizziness although as of a week ago I wasn't yet anemic. My GI is keeping on top of my case which is a good thing. But I'm not doing so great which obviously is not a good thing.
 
Dam this is so frustrating!! Not that I really want to have crohns, I do want access to the right treatment if that will make me feel better (like everyone else here).

Had a colonoscopy that finally showed something albeit it was only a small patch of non-specific mild inflammation, but inflammation! But, now gastro wants to see ulcers. He doesn't want to misdiagnose something that is not really there and understand that. He has been telling me I have a functional bowel disorder aka IBS for the last 4 years.

Anyway Rheumy gave me a prednisone taper for my joints as they are screaming at me at the moment and that really settled my gut down. So gastro want to rush and do pillcam now - booked for next week. Just annoying it is going to cost me another $600 (insurance covers rest). I am on salazpyrin 3 g/day, pentasa 1 g/day and omeprazole -- so I doubt ulcers would come through while taking those anyway!!
 
From reading some of the posts on this thread I think I've come to the right place :biggrin:

I've been having some health issues for the last 5 months and am having a hard time deciding what my next step should be, so if any of you lovely people have some advice for me that would be great :).

For a little background information, I've always seemed to have what my mom liked to call "tummy troubles", but we never really though it was anything serious.

When I was around 10 (I'm 23 now), one of my sisters was diagnosed with severe Crohn's disease. She's had many surgeries and has been on almost all of the medications that are available, but in recent years has been doing better thanks to remicade. In the last few years my mom has also had some gut issues and is currently thought to have Leukocytic Colitis. She's waiting for a GI appointment with my sister's GI in Vancouver at the moment and is hoping for a definite answer.

So this family history along with my current symptoms (intense RLQ pain being the main one, along with fatigue, joint pain, loss of appetite, all kinds of bms [i never really know what I'm going to get on a given day], as well as passing mucus), leaves me wondering if what's going on is more than the IBS that my gp thinks it is. He has put me on a low dose of Cymbalta to help with the pain, and he thinks that some depression is whats causing the fatigue and loss of appetite, though I don't agree. The cymbalta was helping with the pain up until a couple of weeks ago, but it has come back with a vengeance.

I'm currently waiting to see a GI (I've been referred but they haven't called with an appointment date yet), and I'm trying to decide if I should go back to my gp and ask for more tests. I've had x-rays, ultrasounds, a CT, and blood tests that have all come back as normal, but lately I've been having dizzy spells ,also when I stand up to fast I start to see black at the edges of my vision, and my hands shake really badly.

Sorry for the novel, and thanks in advance for any advice:heart:
-Charlotte
 
CharlieB.
Welcome to the forum. I am paging forum member DustyKat to respond. In the meantime could you answer a few questions for us? Have you lost any weight? Do you know what blood tests were actually ordered? Was Vitamin B12 included, iron studies and inflammatory markers? And how was the CT done-- with a contrast solution that you drank? Because of your symptoms, family history, and your young age it is imperative that any form of IBD (inflammatory Bowel Disease is ruled out). Do you know the name of the GI you have been referred to? You want to be sure that it is someone who specializes in IBD. Don't give up. Keep pressing for answers.
 
Thanks for responding so quickly :)
I'm not too sure on the weight loss front as I don't currently have a scale, but just off how my clothes fit I think I have lost some.
I'm not sure about the blood tests either, my gp said we were "going to throw the book at it" but I still have to phone his office to check which tests were done.
The CT did have contrast, but turned up normal. I was supposed to get another CT (I think it was a CT enterography), but the radiologist rejected it based on my age. Which I don't think should be a factor since I've only ever had 2 CT scans in my life and my sister has had some rediculous number (around 35 I think) with no problems.
The GI that I requested was Dr. Fedorak out of the U of A here in Edmonton, as he did treat my sister before she moved to BC, but my gp said that since he's doing more research lately he may not be taking patients. I'm hoping he'll see me but if not I'll have to see someone else.
 
Oh and I forgot to add that I do have issues with gluten, though I've had the blood test twice and both times it was negative, so I've been following a GF diet since 2008.
 
Well a referral to Dr. Fedorak should get you into the group of GI's that specialize in IBD--but your Dr.is correct--that may not be who you see. Are there diagnosed celiac's in your family? You probably know that testing while being on a GD diet will not show up celiac disease, so if you wanted to pursue testing for that now, you would need to go back on gluten--I am not sure of the guidelines right now, but it is for at least three weeks. Did you have an upper endoscopy back when you had the gluten testing? You can still have a negative blood test with positive findings on the scope--however, again because of your gluten-free diet the scope wouldn't help at the moment. I am asking about the gluten because all of what you describe could also be celiac disease or gluten intolerance. Any chance that you are consuming gluten now without realizing it--are you cooking where there could be cross- contamination, eating out more or at different restaurants, eating new foods?

Yes the CT-enterography was what I was asking about.

DustyKat may take a day or two to post, so keep checking back.
 
I tend to be quite careful with the GF diet, but since the pain started I've been even more cautious. The tests I've had for it were only the blood test and I've never had a scope of any kind. Also as far as I'm aware no one in my family has celiac disease, but there are a few of us that feel better when we stick to a GF diet.

As for the CT, if it was a CT enterography that I had then I have no idea what the other CT my gp requested was....weird

And thanks for the help happy, I'm really glad I found this forum as even though there are people in my family that know what I'm going through it's hard to get ahold of them sometimes as they do live in another province. My fiance is trying to be supportive, but he's healthy as a horse and always has been so I just don't think he really gets what's been going on
 
Hey all,

I'm currently undiagnosed and will be going under for my first colonscopy.

Saw the proct today and he wanted to refer me to an infectious disease specialist. My hem's have been oozing blood, which he says is typical to it being a symptom rather than a cause for anything.

I spoke up about Crohn's to him and he seemed surprised. He stated I don't have the classic symptoms. I have been having a fever once a month that includes extremely painful ache and joint pains. The fever breaks during the night and I ake up with extremely sweaty sheets.

Two weeks from tomorrow I will have it done. He said he will check everything and biopsy even if there is no evidence of scar tissue or inflammation just to make sure.

I feel validated that I'm not crazy and my Dr. saw enough of my concern to actually proceed with a scope.

I still doubt that it could be Crohn's... but it makes sense with all of the symptoms that I have.
 
I'm so glad things are moving in a more positive direction for you.

It's possible the scope will be normal, but that alone will not rule out CD. CD occurs from mouth to anus and both scopes only peek into either end of a very long small bowel. They cover the large bowel and digestive tract/stomach well, but not the small bowel.
 
It's a weird feeling. I would like them to find out it's CD so I can just move forward with getting it into remission. On the other hand, I'm kind of hoping they find something with a very simple explanation and an easy fix...

I will be having the scope done in two weeks. I work in an elementary school classroom. Wondering if I should take the day off work before hand because of the prep. I heard it's pretty crappy (pun intended).
 
Yes take the day off work before, no doubt. You will need to be at home with fast and easy toilet access once the prep starts. And consider taking the day off after too.

And I can totally relate to your first sentence. :ghug: I'm sure many others can too.

I want more than anything to be diagnosed with something, anything, but after 9 years of being sick I still have hope that it'll turn out to be something simple and curable. Stupid I know!
 
So I'm freaking out about something not CD or UC related, but I need some support, so here I am.

I have posted this on various thyroid forums, so I'm gonna copy/paste:

Up until 10 days ago my concerns have been: chronic diarrhea that came after a bout of Cdiff, but might but might be colitis related. Migraines, since puberty, but changed recently in type, and one constant headache for 8+ weeks now, that the think may be due to intracranial hypertension due to a CT scan that showed a "partially empty sella" ( where the pituitary sits). A DVT 2+ years due to Factor V.

10 days ago I noticed a lump on the right side of my neck. I thought it was a swollen lymph node, which made sense given my kids and husband had recently all had colds. But I never got sick. And the lump stayed, and kept getting bigger. My appetite shrunk, in part because it started to get harder to swallow. Yesterday I had finally had enough when I had trouble taking my morning meds and called my PCP. She felt around, was concerned that all/most of the lymph nodes from chin down the neck to thyroid were enlarged. I mentioned that I had been worried about the thyroid being involved as well. She hoped it could just be strep, but that came back neg. she ran a CBC, and a TSH. CBC all looks normal.

TSH Ultrasensitive 0.04
Range. : 0.34 - 5.60 mIU/L

What on earth can that mean for someone who has never been on thyroid meds? Every thing on the 'net for a level that low mentions being on meds?

Needless to say, I got these results via a patient portal early this am, and now I guess I wait until my PCP office opens and they call me, or I call them?

I called the Drs office 45 minutes ago, no response yet...
 
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I don't know much about thyroid nor lymph nodes so I'm not able to be much help. However, lsgs has had a lot of issues with her lymph nodes lately including possible lymphoma so she may be able to help answer your questions - paging lsgs, are you able to help Wildmtn at all?
 
Hey just wanted to quickly say I've seen the post and should hopefully get a chance to reply properly tonight!
 
So I'm freaking out about something not CD or UC related, but I need some support, so here I am.

I have posted this on various thyroid forums, so I'm gonna copy/paste:

Up until 10 days ago my concerns have been: chronic diarrhea that came after a bout of Cdiff, but might but might be colitis related. Migraines, since puberty, but changed recently in type, and one constant headache for 8+ weeks now, that the think may be due to intracranial hypertension due to a CT scan that showed a "partially empty sella" ( where the pituitary sits). A DVT 2+ years due to Factor V.

10 days ago I noticed a lump on the right side of my neck. I thought it was a swollen lymph node, which made sense given my kids and husband had recently all had colds. But I never got sick. And the lump stayed, and kept getting bigger. My appetite shrunk, in part because it started to get harder to swallow. Yesterday I had finally had enough when I had trouble taking my morning meds and called my PCP. She felt around, was concerned that all/most of the lymph nodes from chin down the neck to thyroid were enlarged. I mentioned that I had been worried about the thyroid being involved as well. She hoped it could just be strep, but that came back neg. she ran a CBC, and a TSH. CBC all looks normal.

TSH Ultrasensitive 0.04
Range. : 0.34 - 5.60 mIU/L

What on earth can that mean for someone who has never been on thyroid meds? Every thing on the 'net for a level that low mentions being on meds?

Needless to say, I got these results via a patient portal early this am, and now I guess I wait until my PCP office opens and they call me, or I call them?

I called the Drs office 45 minutes ago, no response yet...

Hi,

Sounds like you have a pretty complicated case!

The first thing that jumps out at me is that I'd probably want to get that test re-done. If seems quite unusual and as you said there's nothing on the net about it. Simple things are simple, get it rechecked and make sure it's accurate. Labs make mistakes, people make mistakes. If it was really that low I might expect something else to be out of whack too?

There are autoimmune diseases of the thyroid like Graves disease. Autoimmune stuff causes funny lymph nodes. Lymph nodes can also swell up for pretty much no reason. Are the nodes on one side, both sides, how big are they? Lymph nodes tend to be at the sides of the neck (the big muscle that connects to your collar bone and behind) and under the chin. There is an autoimmune panel the docs can do.

My lymph node issues are related (supposedly) to my autoimmune disease. Sjögren's syndrome.

Thyroid issues can also cause pretty much all the symptoms you listed, including diarrhoea. So if it is that, it should have a reasonably easy fix?

I'd be really interested to know what your doctor makes of this, please do let us know.



As for me I'm having possibly a horrific flare. My doctor has taken a whole bunch of bloods and stool tests. She is testing for infection and retesting my calprotectin. Part of me hopes it comes back a lot higher so the docs can't debate it anymore. I have had to travel for work this weekend and I've lived on painkillers. It's just awful. There are no stomach cramps this time round, it is exactly like doing a colonoscopy prep, very little notice. I'm in a lot of pain with my gall bladder but my surgery is in just over a week so I need to hang on. I really wanted to go into this feeling confident and a little bit well. I hope when I've recovered form surgery and get back on LDN I should be ok, might need a wee kick start with some pred. On th plus side my bosses have given me a full month off to recover which really takes the pressure off. Anyway thanks for letting me have a little rant, it's amazing how quickly you can go from 90% well to crippled.
 
Isgs, I'm so sorry to hear you are feeling so poorly!! Glad the boss is understanding, at least.

Thank you very much for getting back to me, too. We did run more tests. I'm definitely hyperthyroid. Tests showed: T4: 2.14 range: 0.89-1.76 Total T3: 183 range: 60-181. Two type of antibodies came back negative. I have lost just 5 pounds in the past week, but I've been obese for 2+years with no sign of loss, so that is significant. I can't get in to see endo until April 9th (am on a waiting list and plan to call more offices Monday). In the meantime, GP has ordered an ultrasound and radioactive iodine uptake test, as well as put me on propanolol- I was near panic due to the fast heart rate. The lymph nodes were only swollen on the right, from the one where your jaw ends, all the way down my neck, but now the left side of my neck is starting to feel swollen too (but cardio felt that was just the thyroid) - I feel as though I'm being choked, and it's hard to swallow, I have a pulse oximeter that I keep using to prove to myself that I am breathing. Last night I almost went to the ED, but for what? So I didn't. I figure if I really do have trouble breathing I will, but for now, no reason.

Oh, and of course the diarrhea is now worse! I didn't think that could happen. Thank goodness for my lomotil Rx. I am supposed to have my colonoscopy Friday and I'm worried this thyroid stuff is going to mess that up!

Whew, thanks if you made it through all that!
 
Oh no, Lewis! :( That's awful, I'm sorry you're flaring again and I hope you and your doctor can come up with a good plan to get this under control quickly. I still haven't been well myself either so I'm right there with you! I've been having a lot of blood lately and I'm back on steroids which hopefully is finally getting things under control (I've bled almost every day for a month, and if I make it through today with no blood then this will be the 4th day in a row without blood, so hopefully that means I'm recovering). So, I hope we both start doing a lot better soon.
 
I'm so sorry both of you are feeling so poorly :(.

I got through my ultrasound today. Apparently there are several nodules, the thyroid gland itself is enlarged, too, which they think is thyroiditis.

The D is really bad, which could by in part from the hyperthyroidism. Odd, but it reminds in color of infant poo - very pale yellow.

Colonoscopy on Friday. Hopefully some answers then
 
Quick question regarding CD and flaring.

Is it possible to actually gain weight with CD? I have to try very hard to lose weight. When I do I typically eat fresh fruits and salads which wreak havoc on my GI tract... quick to the bathroom everyday everyday.

Also, in regards to the thyroid and lymph node thing. I have a family history of Hashimodos which is a disease that's similar to Graves and affects the thyroid. When I first went to the doctor with my symptoms which included chronic fatigue, heart palpitations, loose stools, and muscle stiffness/weakness, they tested my thyroid levels. When you spoke of having migraines I also get chronic headaches that my Dr. calls "tension headaches." Tension headaches are said to be brought on by stress, however, they occur for me during times of rest and relaxation, with no stressors present. I wonder if for you, there is an underlying CD or IBD going on that could be presenting as the migraines and thyroid? Perhaps the lymph nodes in response to the chronic inflammation in the body?

I learned very quickly to pester my Doc with questions and to advocate for myself. There's obviously something that's going on.

Hope you get that figures out. The scariest part is the unknown.
 
Wildmtn, pale stools can indicate gallbladder issues (remind me, have you had yours checked out?). It can also apparently be caused by gastritis (inflammation of the stomach lining - for me, when my acid reflux gets going into overdrive, it inflames my stomach lining, and then for some reason I have pale stools like the color of sand). Definitely mention it to your doctor if you haven't already. Good luck with the colonoscopy! You've likely already heard this, but the prep is the worst part. The scope itself is easy peasy, it's like having a nice nap. Let us know if you have questions about it, most of us on here have had at least one colonoscopy if not more.
 
Wildmtn

I have my colonoscopy a week from tomorrow. I feel your pain..

Good luck. I hope they pinpoint this for you so you can get to feeling better.
 
It's been a long time since I've been on here. Lots has happened. More blood clots, MTHFR dx (https://www.youtube.com/watch?v=gC-NAfB0qE4), malnutrition and toxicity issues. On the Celiac work-up the only thing that showed was, t-Transglutaminase (tTG) IgG-High, so I was put on a gluten free diet. (I wasn't eating much gluten before the test) I now have high cholesterol & osteoporosis.Thyroglobulin, Antibody is high. Stool test showed Eosinophil Protein X & Fecal secretory IgA. Positive for Citrobacter freundii which will be treated with Ciprofloxacin. Still have GERD, stomach burning & pain as well as red, swollen tonsils and uvula. Joint & muscle pain and stiffness. Dry eyes. Still having to use the port for hydration. Thyroid biopsy showed no cancer cells. Thank goodness. Still having to use power chair due to fall risk and spasms. Extension/Flexion cervical MRI showed a slipped disk touches the spinal cord when in extension position. Completed pelvic floor therapy that did absolutely nothing to help bowels move but got muscles strong enough to switch to a more comfy pessary to keep my insides from turning inside out. One doc said they think I have a neurogenic bowel. :poo:

Any thoughts would be appreciated.:sign0085:
 
Oh my NatuteLover, that sure is a lot to have going on. I wish I had advice but I'm new to all of this.

Speaking of what I'm new to- I heard that going mostly liquids 2 days out helps with prep, and since tomorrow is prep day, I've eaten light and lots of fluids of today. But the D keeps getting worse. I'm not supposed to have any more lomotil now, so I guess I just deal, but I thought going to liquids would help the gut and I'm a bit sad that things are flowing just as fast if not faster today. Of course I know tomorrow night will be unpleasant, but I was hoping today would be ok.
 
Hi Naturelover, I'm glad to see you around but I'm sorry to hear that so much has happened since we last chatted! I don't have any advice for you but I sure hope you can get some of that figured out, it sounds like a lot to deal with!

Wildmtn, it was once explained to me that, very generally speaking, input tends to equal output (keep in mind that this is not a hard and fast rule, and has many exceptions). So I was told, if you're eating solids, you tend to poo solid. If you're eating mostly liquid, you're going to tend to poo mostly liquid. Obviously this doesn't apply to flare-ups, inflammation, infections, etc. But as a general rule for the general population. So, it could just be that because you're doing mostly liquids right now in anticipation of prep, that could be why the diarrhea has gotten worse.

Azjazer, good luck with your colonoscopy! And yes, it is possible to gain weight with IBD. There are a few folks in this club who deal with being overweight while having IBD symptoms - I'm tagging Melibean and Stargirrrrl as I know they've struggled with trying to get doctors to take their symptoms seriously and have had their illnesses dismissed as "you're only sick because you're overweight, lose weight and you'll be fine". It's horrendous and irresponsible, and I do think that overweight IBD'ers tend to be the minority, but it still definitely happens and shouldn't be dismissed.
 
My tagging hasn't been working lately for some reason, but I saw these posts.

Yes you can have CD and be overweight, there is a support group here on this forum with people in that situation:
http://www.crohnsforum.com/showthread.php?t=66407

I think part of my problem is my cortisol has been found to be high, which can make weight loss harder. My thyroid has had different tests and the Endocrinologist was satisfied the cortisol is a stress response by my body to the underlying inflammation.

But since that can't be treated or diagnosed, i'm somewhat stuck!
 
Star, if you're subscribed to this thread then tagging won't work - for some reason, it only works in threads you're not subscribed to (or at least that's my understanding!). I think they presume that if you're subscribed to a thread then you'll be checking it regardless and will see that someone is asking for you. It's something like that anyway! :p
 
So sorry to hear some of you aren't feeling so well.

I too have been having a bit of a down week where my symptoms that had been starting to stabilize have come back full-force. So frustrating as I'm having to call in sick to work, and am feeling generally anxious about the fact that the underlying issue isn't diagnosed yet. And the things that ARE diagnosed (GERD, hiatus hernia) aren't really responding great to the meds. It's slightly better, but not good.

Have decided to make some major diet changes and am going to try a FODMAP-type approach for a while. Which is depressing, too, if I allow myself to be whiny - because I'm a student and so much of my social life revolves around going out to eat/drink.

Oh well... I hope those of you who are feeling down get some answers and feel better quick!
 
Isgs, I'm so sorry to hear you are feeling so poorly!! Glad the boss is understanding, at least.

Thank you very much for getting back to me, too. We did run more tests. I'm definitely hyperthyroid. Tests showed: T4: 2.14 range: 0.89-1.76 Total T3: 183 range: 60-181. Two type of antibodies came back negative. I have lost just 5 pounds in the past week, but I've been obese for 2+years with no sign of loss, so that is significant. I can't get in to see endo until April 9th (am on a waiting list and plan to call more offices Monday). In the meantime, GP has ordered an ultrasound and radioactive iodine uptake test, as well as put me on propanolol- I was near panic due to the fast heart rate.


Whew, thanks if you made it through all that!

I was put on Propananol about 4 weeks ago. I was diagnosed with a tremor.

A 1.5cm mass was found on my thyroid during a chest ct scan. I had an ultrasound 2 weeks later and it had grown to almost 4cm. I also had about 10 small nodules. My throat feels like it is on fire-my lymph nodes are swollen from close to my chin down to my collar bone. I have an endocrine appointment next week. Just wanted you to know you aren't alone. I don't think the thyroid issue will effect you being able to have the colonoscopy.
 
Oh, I didn't mean I'm new to colonoscopy, I had one last year, but the liquids making the D worse was new. I think I had 20+ movements yesterday, and the urgency is insane. At least this year I see a new GI and instead of golytely I get the miralax and Gatorade prep tonight, and my scope is first thing tomorrow morning.

I both hope they do and don't find something. I want an answer for my pain, but I don't want a scary dx. I want something "fixable" (don't we all).
 
I'm back home from the scope. Everything looked healthy, but I *do* have a single diverticulum in the cecum, immediately adjacent to the appendix opening. So I really did have diverticulitis.

The dr took a lot of biopsies and said I should hear in a week about them.
 
I'm back home from the scope. Everything looked healthy, but I *do* have a single diverticulum in the cecum, immediately adjacent to the appendix opening. So I really did have diverticulitis.

The dr took a lot of biopsies and said I should hear in a week about them.


I'm glad you got some answers, and I hope your biopses come back okay!
 
I get the feeling I am staying in the undiagnosed club - I thought Gastro was calling with pillcam results regardless of outcome over the weekend (I think he though only if finds something), so haven't heard so I am assuming all normal.

I guess it doesn't bother me as much as it did the last round of testing (since then Gastro let me try Pentasa and that significantly reduced my symptoms) - I was hopeful that a diagnosis of "IBD-related arthritis" may have given me access to Humira (if funding is expanded to that anyway in NZ) - I do have diagnosis of "seronegative spondyloarthopathy" - might turn out to be AS (although Rheumy thought IBD-related).

Stuck with methotrexate and salazopyrin for now (hopefully works - only been on methotrexate for a week).
 
Hi Everyone,

I am at my wit's end. I've been struggling with diarrhea anywhere from 3-8 times a day since the last week of August 2014. Went to New Orleans on vacation and lost my appetite and the diarrhea started. I finally got in to see a GI doc in early Oct. I've had a colonoscopy, upper endoscopy, abd CT, numerous stool tests (giardia, cultures, cdiff, fecal fat and other pancreatic-types tests), along with blood tests for thyroid, pancreatic insufficiency and cancer. Everything has been negative! Today, I had a capsule endoscopy and hope I get some answers by the time I see my GI doc next week. I'm also seeing an infectious disease doc (I keep hoping it's a bug no one's found yet) because I've been on two 2-week courses of cipro and flagyl, and I've gotten almost completely better each time. Then, after about 2 weeks of normalcy, I revert back to gas, bloating, frequent diarrhea, loss of appetite and sometimes nausea/vomiting. I've lost over 30 lbs and currently weigh 90 lbs. I have other autoimmune problems: RA, Hashimoto's and Sjogren's disease. I had a small stroke in 2012 on my cerebellum that my rheumatologist thinks was due to vasculitis stemming from my autoimmune problems.

I'm really curious if other folks have improved on flagyl, then gone back to being ill a few weeks later? I will hunt around in the forum to see if I find an answer to that question.

It's been rather depressing but I try to keep telling myself it could be worse. None of my clothes fit and thank goodness for thrift stores, as I've had to replace my whole work wardrobe. I've gone from a size 6 to 00, and sometimes even that is too big. I look horrible.

My husband is freaking out and constantly shouting about why aren't the doctors DOING anything? I got a 2nd opinion from another GI group in Feb 2015, but although the initial visit with the doctor was ok, my subsequent visit with his nurse practitioner was awful. She marched in, told me they thought I had irritable bowel syndrome, and I could go on Lotronex, but I'd have to sign a waiver. I'm not willing to give up yet and give whatever it is I have a lame, catch-all diagnosis, especially on my 2nd visit!

Anyway, thanks for listening. Has anyone else gone months or more getting a diagnosis? I haven't had time to read the whole support group yet.
 
fishwife, I'm so so sorry to hear of all your struggles!

While I haven't experienced the weight loss, I have had diarrhea (anywhere from 3-10+ movements most days) since a C-diff infection in December of 2013, which was started by antibiotics to treat cecal diverticulitis. While in my case we "know" what the initial start was, we are still just as lost as to why the D continues, since I've since tested C-diff free more than 3 times. I have now had 2 colonoscopies, more CTs than I care to count, etc. I am currently waiting on biopsies from the 2nd colonoscopy, but other than finally confirming the cecal diverticulum, everything looked fine. My last GI told me I, too, had IBS, then promptly refused to see me anymore for followups.

I'm sure more people will chime in, but I know there are others here who have gone much longer than me without a firm diagnosis.
 
Fishwife, welcome to the forum. I'm sorry you had to join us but I'm glad you found us. Yes, unfortunately it sometimes takes quite awhile to get a diagnosis. I've been ill for over 5 years myself - they are pretty sure I must have some form of IBD, as we've ruled out most other things with various tests, but they still haven't been able to definitively say that it's IBD or what type, so I'm still undiagnosed. For the most part, my doctors do treat me as though I have IBD, but it is frustrating not to know for sure. If only I knew the monster's name, then I could know how best to fight it, you know?

I don't mean to scare you by telling you that it's been 5 years and counting for me, but sadly that's not uncommon. I once heard a statistic that it takes an average of about 10 years from initial onset of symptoms until diagnosis. That doesn't mean that it'll take 10 years for you, and I sincerely hope that it doesn't. But it does take time. There's no one test that's definitive when it comes to diagnosing IBD. Colonoscopy is probably the best, but even that can miss things (it doesn't see the vast majority of the small intestine, for example). All I can tell you is, keep on pushing for more tests. It's extremely exhausting and difficult and frustrating some days, but you just have to keep on fighting and advocating for yourself.
 
Well guys home from surgery and doing ok, feeling a little better every day. Did not enjoy coming round from anaesthetic, they had to give me medicine to get my heart rate down, it was 150. Felt really quite panicky and couldn't stop shivering after - never felt so cold in all my life! They had to do 5 incisions rather than 4 which kinda sucks.

Back to clinic in a week for staples to come out!

Couple of days before surgery I got a call from GP to say calprotectin up again and I definitely have inflammatory bowel disease and the number doesn't matter so much as you can have lower scores and severe disease and vice versa. Surgeon couldn't find any evidence of it but he did admit he couldn't visualise all the bowel. He says when I've recovered from surgery if I require ibd treatment he will help, even though the day before he said he thought it was more unlikely now I have it. So I am thoroughly confused.

But hey. Just need to concentrate on getting better from surgery!
 
Congrats and condolences on the IBD diagnosis, lsgs! I hope you heal up well and soon. So did they remove your lymph nodes? Or did they just biopsy the nodes? Either way, I hope you get good news from the results. Please keep us updated! Keeping you in my thoughts and sending a big virtual hug your way.
 
Congrats and condolences on the IBD diagnosis, lsgs! I hope you heal up well and soon. So did they remove your lymph nodes? Or did they just biopsy the nodes? Either way, I hope you get good news from the results. Please keep us updated! Keeping you in my thoughts and sending a big virtual hug your way.

Thanks cat, I wouldn't go so far as a diagnosis it's still very much on shaky ground as consultants are still reluctant but it is getting closer I would say. All I want is assurance if I get sick they'll take it seriously.

He managed to remove a full lymph node for testing so although it's not the big one (full open surgery req for that!) if it comes back negative it's pretty reliable there's no cancer at the moment. Have also biopsied the liver too. So he's covered everything we need to worry about at the moment! Hoping for good results in three weeks, then I can work on getting the bowel back on track and getting a reasonable life back. Only thing is i am still having pale stool post surgery so hopefully this is nothing to worry about.
 
Saw GI today. He is driving me nuts. He changes his mind every time I talk to him. Ugh! He is having me try Rifaximin for my constipation etc. Has anyone else used Rifaximin for constipation? He feels that there are multiple things happening to cause my colitis and my colonic inertia. The cold weather is getting the best of my body. Stiff muscles and plenty of muscle spasms. Also getting the Reynauds syndrome. Got some weird lump on my hip now as well as the pain from the dry eyes. When it snows, it pours! Blah! Looking forward to summer. The Rifaximin cost an arm and a leg and so does the Nexium I take. I could pay for college credits with what I'm paying for my Rx.

I took Linzess for chronic constipation, it helped for a while but is also crazy expensive. Also took Rifaximin before as well, it helped for a while then stopped.
 
GI called me today -- all biopsies show normal tissue. I don't weather to be happy or not :-/

He did talk to me quite a bit on the phone though. We discussed that I've already been tested for Celiac (negative) and that I've tried going dairy free (no help) and that now I'm on lomotil that my pcp gave me. He set me up with another appt with his NP to follow up. Thank goodness he didn't just off me like the last one did! I see the NP in mid-May.

Of course, confounding everything right now is that I have a thyroid nodule and likely thyroiditis and am hyperthyroid at the moment. So that's not helping the D. But I wasn't like that just a year ago, and have the test results to prove it.
 
fishwife, I'm so so sorry to hear of all your struggles!

While I haven't experienced the weight loss, I have had diarrhea (anywhere from 3-10+ movements most days) since a C-diff infection in December of 2013, which was started by antibiotics to treat cecal diverticulitis. While in my case we "know" what the initial start was, we are still just as lost as to why the D continues, since I've since tested C-diff free more than 3 times. I have now had 2 colonoscopies, more CTs than I care to count, etc. I am currently waiting on biopsies from the 2nd colonoscopy, but other than finally confirming the cecal diverticulum, everything looked fine. My last GI told me I, too, had IBS, then promptly refused to see me anymore for followups.

I'm sure more people will chime in, but I know there are others here who have gone much longer than me without a firm diagnosis.

How frustrating! I think sometimes doctors forget that they WORK FOR US. I hope something gets figured out for you soon. Have you tried hyoscyamine? I think it works a little better than lomotil.

Thank you for your welcome and sweet reply, Wildmtnhoney :)
 
Fishwife, welcome to the forum. I'm sorry you had to join us but I'm glad you found us. Yes, unfortunately it sometimes takes quite awhile to get a diagnosis. I've been ill for over 5 years myself - they are pretty sure I must have some form of IBD, as we've ruled out most other things with various tests, but they still haven't been able to definitively say that it's IBD or what type, so I'm still undiagnosed. For the most part, my doctors do treat me as though I have IBD, but it is frustrating not to know for sure. If only I knew the monster's name, then I could know how best to fight it, you know?

I don't mean to scare you by telling you that it's been 5 years and counting for me, but sadly that's not uncommon. I once heard a statistic that it takes an average of about 10 years from initial onset of symptoms until diagnosis. That doesn't mean that it'll take 10 years for you, and I sincerely hope that it doesn't. But it does take time. There's no one test that's definitive when it comes to diagnosing IBD. Colonoscopy is probably the best, but even that can miss things (it doesn't see the vast majority of the small intestine, for example). All I can tell you is, keep on pushing for more tests. It's extremely exhausting and difficult and frustrating some days, but you just have to keep on fighting and advocating for yourself.

Thank you for your welcome, Cat-a-Tonic! I appreciate your honesty. It took me 11 years to get diagnosed with Sjogren's disease. Autoimmune diseases are so mysterious (and annoying!) I sincerely hope you have a definitive diagnosis soon.
 
Hi naggingfishwife, another fellow sjoggie here! I got diagnosed totally by accident about 6 years ago. How do you find living with sjogrens? For me it's not so bad, my guts are what give me grief!
 
Still nothing from the Gastro department about my case, dating back 10 weeks ago!

Composed an email which will be going to the complaints service next week if I still hear nothing, I sent a reminder letter to GI 2 weeks ago, still nothing.

Not holding my breath because they are proving very very slow at sorting another complaint. I was told in February they wouldn't be able to give me a resolution in the expected 4 week time frame. No new time frame given. They just said the co-ordinator dealing with it meets once a week.

I asked for an update a week ago, and beyond an acknowledgement it will be passed to the correct person, nothing.

I swore I would never again see a GI at my local Hospital, but my care at the non-local is proving so much worse than it ever was there, and that is saying something, I am seriously considering it.

Out of courtesy (!) to my GI i've been waiting that time for confirmation it's okay, subject to blood tests, to stop my iron tablets, which I am desperate to do, and drop B12 down to a maintenance dose. So close to getting my GP to take the lead because GI ain't interested it seems.

How can I ever get anywhere when they cancel appointments and expect you to wait another 4 months (which would have been the case had I not been able to get a cancellation) or not do anything between appointments, which appears to have happened this time.

Also having a new symptom, not too worried as I seem to go through cycles of new symptoms which last a couple weeks then don't re-occur. This time it's a real feeling of fullness after eating. I had my modest evening meal 90 minutes ago and i'm still stuffed, been like that after lunch too for a few days.

Bar serious flares I have a very healthy appetite so it is unsettling!

Really hacked off!!
 
Hi naggingfishwife, another fellow sjoggie here! I got diagnosed totally by accident about 6 years ago. How do you find living with sjogrens? For me it's not so bad, my guts are what give me grief!

Hi lsgs,
I've had it since about 1999. My eyes started bothering me (felt prickly, dry and were red all the time) and it never improved. In 2009, I had an ANA profile blood test done and my Sjogrens A ab was elevated. My mouth started getting dry about 2 years later. I really hate it, but I've learned how to manage it pretty well. I was a phlebotomist for 22 years, and learned about making autologous serum eye drops (a great site on this subject is nealmatthews.com), so using eyedrops I make myself from my own blood and a daily teaspoon of fish oil (omega 3's help immensely) keep me going.

I hope you get some resolution to your gut problems. I never knew it would take this long to get diagnosed, but it did take 10 years to get a definitive diagnosis for the Sjogrens.
 
I tend to be quite careful with the GF diet, but since the pain started I've been even more cautious. The tests I've had for it were only the blood test and I've never had a scope of any kind. Also as far as I'm aware no one in my family has celiac disease, but there are a few of us that feel better when we stick to a GF diet.

As for the CT, if it was a CT enterography that I had then I have no idea what the other CT my gp requested was....weird

And thanks for the help happy, I'm really glad I found this forum as even though there are people in my family that know what I'm going through it's hard to get ahold of them sometimes as they do live in another province. My fiance is trying to be supportive, but he's healthy as a horse and always has been so I just don't think he really gets what's been going on

Are you still around CharlieB?

Have you received test results back yet?

I’m so sorry I took so long to respond, just having a few issues at this end.

Dusty. xxx
 
I have had horrible pain for almost three years now scope done twice I was diagnosed with a metriosis in 2012 I have six surgeries had my gallbladder removed have had pancreatitis three time. The pain gets so bad I lay in the bath and cry I have seen so many doctors it is sicken I have a colonoscopy set up this week I hope they confirm what my gi thinks that is cd. What type of pain medication is anyone taking that helps? I can not eat otherwise I have to go to the bathroom all day and other unfun things happen. Thanks for letting me join.the group
 
I just signed up for the forum today. I am losing hair....badly. Thinning all over. The texture has changed dramatically. Pretty certain it is telogen effluvium.
I was convinced it was as a result of being diagnosed with ADHD/ADD & anxiety disorder and the medications I had began in August 2014. Because by the holidays 2014, my hair was noticeably thinner and breaking off. When I visited my psych doc, he assured me it is NOT a common side effect of my mess. He then asked me if I had any underlying medical conditions (only been told IBS), thyroid/hormonal issues (I am still on birth control) or gastrointestinal problems etc... Hmmmm gastro problems could be the Aha! Moment...

Last January of 2004 I had a perianal abscess. The abscess was drained, given a regimen of antibiotics, told I had IBS, prescribed Bentyl and sent on my way. Ever since then I have had issues with diarrhea and some occasional seeping at the point of drainage. Fast forward to January 2015, an abcscess recurrence in same locay but MUCH MUCH worse and more painful. I Scheduled an appointment with the GI to have it drained however, it "spontaneously drained" on it's own, pain subsided and took antibiotics again. So, I cancelled and re-postponed the GI "drainage" appointment. I finally had an appt yesterday and told an anal fistula has formed (this cycle of abscesses will repeat itself indefinitely without surgery) My GI drained the new formation of the perianal abscess yesterday & I have surgery scheduled for next wed. Before he drained the abscess, he examined my anus & he could see endoscopically the fistula opening & draining inside the rectum. So a seton will likely be put in next wed. I began asking about my other symptoms ie bouts of diarrhea, recent blood and mucousy stools, my obvious incessant HAIR LOSS but he is more a colorectal surgeon whom said after repair and healing of my fistula...we could began testing. He said he didn't think it seemed or likely to be Crohn's. So I am not yet diagnosed with any IBD, only IBS. And I am only to take bentyl as needed so no GI meds or biologics or steroids to blame for this state of TE diffuse hair loss. It has been thinning since November 2014 but has REALLY gained steam and been falling MUCH more rapidly all through March. Does ANYONE know if fistulas/abscesses cause hair loss?? Or impede absorption of nutrients/vitamins?? It is NOT surgery trauma b/c my surgery isn't til next week! I want to know/hear from anyone who has experienced similar coincidences & if ANYTHING helped Please!
 
Hi secrest0815, welcome to the forum. I don't take any pain medication so I can't be helpful there. I wish you a lot of luck with your colonoscopy, I hope it gets you some answers. Please update us and let us know how it goes!

Hi adoregirl6, welcome to the club. I've had some luck with biotin slowing down my hair loss - biotin is a B vitamin so you can take it over the counter. I was told that 3,000 mcg is the minimum dose necessary to help with hair loss (I take 5,000 mcg daily). It's not a good idea to only take one B vitamin at a time, so you might want to look for a B-complex with a high amount of biotin in it. Having said all that, even with the biotin, I've definitely lost some hair as well though and I haven't found anything to completely stop or reverse it. Biotin helps for sure but I still have significantly less hair now than I did before I got sick.

Crohn's can definitely cause fistulas and abscesses, and Crohn's in certain areas of the digestive tract can absolutely affect absorption of certain vitamins which can in turn cause hair loss, so I wouldn't be surprised if all your issues boil down to being Crohn's-related. Once you go through testing and figure out the root cause of all of this, and can start treating it, then hopefully the hair loss will slow or stop. Have you had any bloodwork done to check your vitamin levels? Common deficiencies in Crohn's patients include vitamin D, B12, iron and folate, so if it were me I'd be asking for blood tests to check those.

How's everybody else doing? I'm not so great. Had a flexible sigmoidoscopy yesterday to check out why I had a month-long episode of heavy rectal bleeding. The good news, it was all due to internal hemorrhoids and those are healing now and I appear to otherwise be in remission. The bad news, I responded poorly to the sedation and was awake & talking for the entire scope (I wasn't in pain and I don't remember much and I was very loopy & woozy, but I apparently drunk-talked a ton and annoyed my GI, ha ha). The good news from that is, for all future scopes I get to have propofol (anesthesia) now rather than just sedation. I'm not really sure if that's because my GI wants to ensure that I'm comfortable & knocked out, or if he just wants to make sure I shut up, hah. Other than that, I have a massive headache today due to some thunderstorms rolling through, and my grandpa is in the hospital (it sounds like he'll be okay, but it's still worrying). So a bit of a rough patch lately, but hopefully things will improve soon.
 
I'm new here as of today and I honestly have no clue what is going on with me. At 15, I had my first kidney stone. I now am 22 and have passed 10 more confirmed stones and have two more sitting up in my kidneys at the moment. The problem is that doctors are telling me nothing can be done about this and that I am not in the constant pain I am typically in. I have been having issues with loose stool as well as the other extreme of constipation and gas all the time since about 19. I went from about 130 to my current weight of 100. I ache everywhere daily and I am so tired of hearing it is in my head. How can all of these physical symptoms manifest if this is just in my head? My primary currently is only treating me for depression and wont refer to any specialist. I just this week finally got insurance for the first time since I was 18 and I know I need to do something, but I don't know where to start. Any advice would be amazing.
 
I'm new here as of today and I honestly have no clue what is going on with me. At 15, I had my first kidney stone. I now am 22 and have passed 10 more confirmed stones and have two more sitting up in my kidneys at the moment. The problem is that doctors are telling me nothing can be done about this and that I am not in the constant pain I am typically in. I have been having issues with loose stool as well as the other extreme of constipation and gas all the time since about 19. I went from about 130 to my current weight of 100. I ache everywhere daily and I am so tired of hearing it is in my head. How can all of these physical symptoms manifest if this is just in my head? My primary currently is only treating me for depression and wont refer to any specialist. I just this week finally got insurance for the first time since I was 18 and I know I need to do something, but I don't know where to start. Any advice would be amazing.

If your current doctor won't refer you I would find another doctor, if I were you. I've also come across doctors who refuse to take a serious look at my physical problems because of my psychological ones. Pain CAN be psychological, but for doctors to assume it is before they have ruled out physical conditions, is in my opinion just bad health care.

Try a new doctor, and be pushy. If they still claim they think your problems are due to depression, question them. Insist that you need to have your physical symptoms checked properly.

You should not have to be in constant pain.
 
Hi AutumnKirsten, welcome to the forum. I agree with what Izzie said - start looking for a new doctor. It sounds like your current one is not taking you seriously and you're suffering because of it - that's not okay, and it's time to find a doc who does take you seriously. Once you get a new primary care doc, the first steps are usually bloodwork (inflammation markers like CRP and ESR, vitamin levels, check your thyroid) and stool tests (check mainly to rule things out such as bacterial infections, parasites, etc, and can also check for blood in your stool). If those results don't point you in a specific direction (or even if they do), then the next step is usually to get referred to a gastroenterologist (GI). The GI will likely do more in-depth tests such as colonoscopy, upper endoscopy, CT scan or MRI. So, that's where I would start if it were me - first find a decent doctor, have some preliminary tests done, find a GI, and have more tests done. Good luck and keep us posted on how you're doing!
 
Thank you both of you. As an update on how I am, an ER trip was needed last night. No fun but at least I am hydrated again! I believe I will start trying to figure out a new primary as soon as possible. I just have to figure out how medicade works first! Again, thank you both for responding so quickly!
 
Whine ahead!!

I just got back from the Endocrinologist, because my thyroid is enlarged, and I'm hyperthyroid right now.

Along with the other tests they ordered, was a sed rate -- it came back high! Well, gee! Now, how on earth do we determine which body part is the most inflamed???
 
AutumnKirsten, I'm sorry to hear you had to go get IV fluids, but I'm glad it helped a little bit. I hope you don't have too much trouble figuring out how Medicaid works! I am sure there are at least a few others on the forum who are on Medicaid, so if you start a new thread about it then hopefully your questions can be answered better than they can in this thread.

Wildmtn, unfortunately my understanding of ESR (Elevated SED rate) is that it's just a general measurement of inflammation in the body. It could be that one part is inflamed, it could be multiple parts, it doesn't distinguish unfortunately (CRP also doesn't distinguish, so the one time mine was a bit high I didn't know if it was my guts, my joints, something else, all of the above, none of the above...?). It's one baby one step closer, you know there's inflammation - now you just need to track it down! Did your doctor mention any ideas to you of tests that they might run to narrow down where the inflammation is hiding? Maybe something like a CT scan or MRI of your abdomen?
 
Progress!

Had a message from Consultants secretary, she is getting one of the Drs to write to my GP with the results from January and a copy will come to me. Also she will get me another clinic appointment.

Haven't been able to reach her to confirm but that's what the message said.

Really worried the stool test was normal and they'll be reluctant to take things further, but trying my best not to think about that possibility...:shifty-t:
 
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Call me Gadget. I'm 23, female, and have been in diagnostic limbo for 4 months (though it seems to me many people take longer than that and I'm really hoping this doesn't drag out).

Was referred to a GI practitioner when I was having almost constant d, occasionally bloody. Had an upper GI series and a colonoscopy, revealed minor gastritis/esophagitis and a completely normal looking colon, but the terminal ileum was showing some signs of inflammation, doctor wrote in my report: "Exam suspicious for ileal Crohn's disease").

So I went online and did my research. I thought it made perfect sense. The d, dramatic weight loss (at least 25 pounds), and I quickly learned that Crohn's is a disease that is endemic in my people (I am full-blooded European Jewish) so I figured I had an answer quite fast.

Wrong. Doctor ordered a pill cam and a Prometheus blood test, both of which were normal. I was shocked. Had the inflammation they found suddenly disappeared?

By the time they ran the last two tests my symptoms had calmed down (d had stopped, but I've developed other problems in time (severe pain lower right quadrant, constipation, bloating, nausea)).

I finally switched doctors to one who listens to me better, she ran a CT scan a couple weeks ago which came back just fine, save the ileal inflammation they had already found. So the inflammation is obviously still there, but she thought it was probably an infectious cause and not Crohn's (which makes no sense, infections don't come and go for two years, nor would they survive multiple antibiotics I've had to take for repeated sinus infections).

My new doc wanted some more blood work before starting me on any meds but I'm worried since I have no active d, they still won't find anything. Waste of time, right?

I almost wish my first doc had tried me on experimental treatment from the get-go. Then maybe I would've had a better answer. I've become a bit masochistic trying to make my symptoms come back just to see if treatment would work.

But my problem is still not knowing, especially when this is a disease that is 5 times more likely to happen to someone of my ethnicity!

My biopsy results, which also said possible Crohn's, as well as many of my medical records, may have gotten lost in my old doctor's office's computer system, as they rebranded their entire firm (and their website where my medical records were being stored spontaneously shut down after that happened, my old doc had seemingly no recollection of my treatment plan so I think some of my papers went missing).

I don't even care if I need another colonoscopy just to get a biopsy done better. I was asleep and don't remember. Whatever it takes to get an answer. I'm desperate.
 
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Welcome to the Undiagnosed Club and i'm sorry you have had to join!

I went ahead and edited your post so it's easier for other members to read, I hope you don't mind :)

It sounds very frustrating what you have been through and all of us here can relate!

Blood tests can be normal sometimes even with people with confirmed, active, IBD and personally I hate doing tests I feel are a waste of time, but it might be worth a try perhaps?

Have you asked your current Dr their thoughts on doing another colonoscopy at this stage? And if you haven't already your point about the inflammation being unlikely to be caused by an infection is a good one, raise that with them too.

Problems with sinuses can be an extra-intestinal symptom of CD.
 
Hi all, here I am again. It was an extremely rough weekend. Anyone know of any good/cheap over the counter nausea med? I am currently staying in a cheap hotel due to being kicked out of my in-laws because I can't work. So I really don't know what to do. . .But I do know I need this vomiting and diarrhea to stop! Thanks in advance!
 
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Thanks StarGirrrrl, it is incredibly frustrating. Got a call from my doctor today saying that my blood tests were all normal and didn't show any signs of inflammation, only elevated thyroid levels (which I have been battling off and on for 5 years and the cause was never determined, because, once again, all classic blood signs of Graves' disease specifically were all "normal"). As a result, she's not starting me on any kind of Crohn's treatment...I'm not sure how I can even convince her that all my symptoms have fit the picture because she hasn't known me that long but I already threatened to go see a third doctor to get a proper diagnosis. Though my medical records have still not been transferred over so she may just need to see everything in my history before she can make a decision like that. But I'm losing my patience pretty fast. I may ask for a second colonoscopy if those biopsy results really did get lost, and if it requires a third doctor to do it, then so be it at this point. Really getting upset.
 

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