Hello, I'm new but no diagnosis yet

[Cat-a-Tonic]

Hi, everyone. I've been lurking in these forums for a little while and thought I'd finally introduce myself. I'm a 30 year old female from the Midwest, and I've been ill for the better part of a year. My apologies in advance, I tend to ramble on, so this will probably end up being a long post...

I got suddenly ill in October 2009. I was at work when I very suddenly became very nauseous, dizzy, and shaky. (I don't know exactly why I got sick, but I think it's because I ate something funky for dinner the night before.) I went home sick thinking that I had a stomach virus or food poisoning. After about a week, I had gotten worse instead of better, and I was really dehydrated so I went to an urgent care clinic. They said I probably had viral gastroenteritis, they put me on an IV and gave me some anti-nausea medicine (compazine, which only made me feel even more dizzy and like I couldn't breathe), and sent me home. I gradually felt better slowly over the course of a few weeks, but I never felt 100% better. I had lower-right abdominal pain that didn't completely go away, even when I wasn't having d or any other noticeable symptoms. I had never had this kind of pain before, but I have always been somewhat of a slow healer, so I just assumed that I was still slowly getting better and it'd go away on its own eventually.

About 6 weeks after I had first gotten suddenly ill, I became ill again with the same symptoms. (My main symptoms are lots of d, nausea but very little vomiting, weakness & fatigue, pallor, cramping and pain especially in the lower-right, light-headedness, weight loss, loss of appetite, chills and mild fever.) I went to my regular doctor after the symptoms came back, and he said it's possible that the gastroenteritis either came back or never went away (?). It didn't seem to occur to him that it could be something other than gastroenteritis, but he said maybe it was bacterial gastroenteritis instead of viral. He took a bunch of stool samples that were tested for various bacteria (e coli, salmonella, campylobacter, etc) and they also tested me for parasites. All of the tests came back negative, so the doctor said to just take it easy and I should be all better soon.

I didn't get better. The symptoms would still periodically flare up - anywhere between every few days and every few weeks, so I went to see another doctor to get a second opinion. She mentioned the possibility of celiac or crohn's or a thyroid condition, and she took a bunch of blood tests to test for those things. The blood tests all came back negative, and I was then referred to a GI. The GI said that he suspected either crohn's or celiac based on my symptoms (he didn't think UC because I haven't had any blood in my BMs). There is celiac in one branch of my family tree, so that was a definite possibility. There is no crohn's that I know of in my family, but when I looked it up, crohn's seemed to fit my symptoms a lot better than celiac. I can eat bread & pasta without problems (chocolate, garlic, peanut butter, oats and dairy all seem to cause me nothing but gut trouble, but I do fine with wheat). Also my symptoms get significantly worse when I'm under a lot of stress, and my understanding is that can be indicative of crohn's but not celiac. My GI said he would test for both crohn's and celiac, and he scheduled a colonoscopy with biopsy.

The colonoscopy was kind of awful. First of all, I tried the gatorade & miralax prep, as I had heard that it is much easier to get down (and keep down) than the nasty-tasting prescription prep stuff. I drank my prep the evening before my colonoscopy, and it went down fine, but the next morning I was very dehydrated and had to be put on an IV of sugar water before I could have the scope done (and the nurse messed up my IV, so it took forever to get hydrated again). The scope itself was not a problem as they gave me good drugs and I don't remember a thing, but the next day I was in a ton of pain. I called my GI to see if this was normal, and he said that if pain is already one of my symptoms, then more pain after a scope would logically be normal. I kind of felt like he was giving me the brush-off, but I gradually did begin to feel better (although it took a week or two for the "extra" pain to go away and to get back to my usual level of pain).

I got the results from the scope, and they're frustrating to say the least. The scope was clear and normal, and so were the biopsy results. So every test that I've had so far has not shown anything, and I'm getting really depressed. Obviously something is wrong, and it's so upsetting that it's not showing up in any test. Has anyone else had a clean scope, normal biopsy results AND normal blood tests? My understanding is that, if this were celiac, it would have shown up on biopsy - so the vague assumption right now is that this is crohn's (based on the fact that celiac has been ruled out). But I still do not have a diagnosis and my GI has largely been ignoring me (he has not prescribed me any medications nor has he recommended any other tests - he didn't even call me to tell me the biopsy results, he just sent a one-paragraph letter saying everything's normal - on a related note, I'm thinking of switching GIs!). Does anyone have any advice for me? Thanks.

 

[Astra]

Hi cat-a-tonic
and welcome

God, I feel your pain hun!
This is so familiar for a lot of us, nomal bloods, normal scopes, no-one listening to us, and just wait til you get the old IBS diagnosis, what fun!
Crohns is a hard diagnosis, I believe based on whether there is inflammation present at the time.
My advice? get a second opinion, and be prepared for battle!
Your symptoms do sound like an IBD, and if you're flaring you need some meds, or you will sink deeper into depression, been there done that!
Not sure how you would go about doing this, over here the GP is the first port of call for a referral to another GI.
Hang on in there, stay strong and be determined
Glad you found us, here for you now
lotsa luv
Joan xxx

 

[Emkat8]

Wow, you sound so much like me and all that I've experienced.... This is practically my story! I too have been struggling with my stomach issues since about December, although I started feeling somewhat odd not like my normal self in about September. I first went to the doctor though in December and was originally told I had IBS. Blood work was taken then and everything was normal... When I kept having symptoms (very frequent diarrhea, mucus in my stool, lower abdominal pain usually on the right) I went back to the doctor again and he agreed that I probably had something more than IBS. I was sent to a colon/rectal surgeon to get a colonoscopy done which was completed. Mostly everything looked good, all I had was mild inflammation of the last part of my small intestines so the doctor pretty much said not to worry, it was very mild and she took biopsies and would be able to tell me something when those came back.

So I get a call about a week later from the secretary at that office telling me that my biopsies were normal. She said I didn't need to return to see the doctor because everything was fine with me. They gave me a prescription for medicine that is supposedly to help with the diarrhea and thats it. I was very upset and frustrated, as I'm sure you know! So here I am with this medicine (which by the way has not helped) and no answers as to why my intestines were inflammed and why I have constant pain and naseau. So I totally know what you're going through. Thank goodness for the kind people on this forum, they are very supportive and it lets me know at least I'm not crazy!!! I do have a problem, and just because the doctor didn't find out what yet doesn't mean it doesn't exsist-thats what you have to keep in mind. Its very frustrating when they brush you off though...

Just hang in there, and be persistant. I'm in the process of seeing my GP again, in hopes he can send me on to someone who actually cares about my case. Hopefully a new doc will help you out too. Good luck with everything and I'm sure you will like it here. Everyone has been so kind to me and they are very helpful too

 

[Cat-a-Tonic]

Thanks for your reply, Joan. I should call my GI and see if he can get me any meds. I'm still pretty upset about the normal scope & normal biopsies (and the fact that I have to pay out of pocket for them no less! I envy you Brits and your health care system - I can't tell you how many times I've daydreamed of moving to somewhere like Britain or Canada, just for the health care). I tend to cry easily lately, and I don't want to get all weepy on the phone, so I'm taking a few days to calm down first before I call my GI. He hasn't mentioned IBS yet so I guess I'm willing to give him another chance before trying to switch GIs.

 

[Cat-a-Tonic]

Emkat, I have frequent mucus too - I was so grossed out the first time I saw it! And I absolutely understand what you mean when you say "at leasts it lets me know I'm not crazy!" I've had a few people, especially one family member in particular, say rather bluntly that they think I am either totally faking or that it's not as bad as I say it is. Even when I started crying, this family member continued ripping me apart and not empathizing whatsoever with me. Needless to say, I haven't gone to visit that person again since that incident! But it is nice to have a community of people here who know exactly what you're going through and who know you're not crazy and you're not faking and it IS as bad as you say it is.

I hope you get diagnosed soon too or at least get some relief! (And I hope your family is a lot more supportive than mine is!)

 

[Emkat8]

I totally understand about peopel not believing you. I too have had this problem with my mother. She seems to think that the only reason I have any issues with my stomach is stress. She continually brings up that I am being overly dramatic and even after they found inflammation during my colonoscopy, that same day she came to my house and told me I was probably just stressed and that was what caused my inflammation.... It is very FRUSTRATING!!!! But I finally told her the other day that she needs to stop saying that, because even if stress is part of the problem that is LIFE and there is nothing I can do to stop it. I have already de-stressed as much as possible. Thank goodness for my wonderful hubby though, he is always 100% supportive and I'm so very thankful for him so at least I have somebody to talk to. Hopefully you have someone you can be open with too

And yes, the mucus is so disgusting to me too... And I always seem to have a lot of gas too when I pass the mucus so it is so embarrasing, especially at work!!! AHHHHH the joys.... lol

 

[Cat-a-Tonic]

I wish my husband was as supportive as yours, Emkat. My hubby tries, but he's one of those people who doesn't really have an "internal censor", so he's sometimes blunt and says things most people wouldn't. He's actually one of the people who had suggested that some of my symptoms might be psychosomatic (he's not the family member I talked about in my earlier post though). Part of the problem was that I had been bottling things up and keeping a lot of my problems to myself, so even though my husband saw me running to the bathroom a ridiculous number of times on my bad days, he didn't think the pain & other symptoms were as bad as they were because I just hadn't told him what I was going through. So after a lot of talking, he's starting to understand now what I'm going through, and I'm trying not to bottle things up so much anymore. It's still kind of hard for him to empathize with me, though. He said he simply cannot wrap his head around feeling ill all the time, or being terrified of trying certain foods for fear of being sick for days or weeks on end, etc. He's one of those people who is NEVER sick - we've been together for over a decade, and I think he's been sick maybe twice in all that time, and both times he was sick for about one day at most. So it's hard for him to sympathize because he has no idea what it's like to be sick for more than a couple of hours, let alone weeks or months!

I'm glad your hubby is so supportive, and thankfully I do have other people in my life who are 100% understanding. I actually have a close friend who was just diagnosed with crohn's herself, although she & I have very different symptoms (I've never heard her talk about d or pain, and she said she hasn't even been taking her vitamins lately! I'm rather jealous because she seems to be doing better than I am, and she's got a diagnosis and I don't). So it is really nice to have a friend who is in the same boat I'm in - she and I joke that, with all our health problems, we both feel like we're about twice our age, so the next time we throw a party it's going to be an old lady theme with activities including playing bingo, drinking Ensure and watching Matlock.

 

[Hedgehog]

Welcome Cat-a-tonic,
I had normal colonoscopy and bloods and biopsies - also normal CT scans. Had a very frustrating three years trying to find out what was wrong. Finally had a pill-cam endoscopy which found Crohn's in the small bowel. Like Joan says lots of people have been through this process and my advice is, don't doubt yourself, be assertive and push until you get answers,
Good luck,
Gail

 

[Cat-a-Tonic]

Hi Hedgehog, nice to meet you (I have a pet hedgehog, actually!). 3 years, oh my, I really hope it doesn't take that long to get myself figured out. I'm not sure what my next logical diagnostic test should be - I'm wondering if I should ask my GI for a pill cam next. And what about the CT scan, does that just look for inflammation or can it see more detail than that? Is that usually the next test to have after a colonoscopy fails to find anything, or is there not necessarily a normal order that these tests are done in? Sorry for all the questions, I'm still pretty new to all this and just trying to get things figured out! Thanks

 

[Hedgehog]

I think the CT scan can pick up narrowing and possibly some inflammation if there is swelling. But the pill-cam picks up everything, even mild inflammation and small ulcers. It's a good test (painless too). My docs went for the cheapest tests first I think but that may be our NHS system here. I didn't have an MRI or a barium swallow which I think are the usual tests to follow endoscopy. If I were you, I'd push for the pill-cam. You have had weight loss and that makes me think that you may have malabsorption which may be due to problems in the small bowel.
Don't despair at my three years wait. I had a remission of 8 months inside that time. I thought my first flare must have been a long stomach bug and got back on with my life. Then another flare came and I started the test process again.
Keep pushing though. You've had these symptoms a long time now. It might be an irritable gut following a GI infection but best to get it checked properly.
Gail

 

[Cat-a-Tonic]

Thanks Gail, that's very helpful. I think I probably will ask for a pill cam next (though I will probably wait until I get some of my colonoscopy paid off first). And I agree with you, I think I probably do have some malabsorption. When I'm feeling bad, of course I eat very little and lose weight, but when I'm feeling okay, I try to eat as much as I can to try to regain the weight. But I never seem to gain any of it back nowadays - even though I try to eat as much as I can, I just maintain the same weight. If I lose a pound and then eat and eat, I still stay at one pound less than I was before. It's worrisome and frankly I've been avoiding the scale because I don't want to see the number keep going down. I was thin before I got ill and I don't need to lose any more weight, so it is a little scary.

 

[Rebecca85]

I know the feeling- i lost 2kg in a week in hospital, they put me on Prednisolone and I haven't stopped eating since- but have only put on 0.5 kg in 3 weeks. But I am happy so long as I don't lose any more. Maybe you could try supplementing your normal diet with those milkshake drinks (like ensure or slimfast) to get extra calories and nutrients into you, and maybe liquids will be absorbed better.

Rebecca.

 

[Nyx]

I actually have a close friend who was just diagnosed with crohn's herself, although she & I have very different symptoms (I've never heard her talk about d or pain, and she said she hasn't even been taking her vitamins lately! I'm rather jealous because she seems to be doing better than I am, and she's got a diagnosis and I don't). So it is really nice to have a friend who is in the same boat I'm in - she and I joke that, with all our health problems, we both feel like we're about twice our age, so the next time we throw a party it's going to be an old lady theme with activities including playing bingo, drinking Ensure and watching Matlock.

I never had pain or D either, and wound up with a bag within 3 years! So don't feel jealous about that...I had really bad inflammation and didn't really know it. I was also having alot of blood in my stool that I couldn't see (only found out after I was admitted to the hospital after fainting from bloodloss). Fortunately for me, I got my dx right away from just a CT Scan. The problem I have is that I don't present with symptoms till it's almost too late.

Sorry to hear that you're having a hard time getting a dx, but hang in there and keep badgering your doctor to figure out what's wrong! Good luck!

 

[Cat-a-Tonic]

Rebecca: Yes, I have been drinking Ensure lately for the extra calories & vitamins. I have one for breakfast every day (I've never been a breakfast person, if I eat before 10 AM I get a massive stomach ache, and that was always true even before I got really ill last year, so something really easy like Ensure is about all I can handle for breakfast). So even adding that to my diet every day hasn't helped me gain any weight.

Nyx: I hope my friend doesn't have to have a bag! I know she does have some symptoms, but she's been reluctant to talk, and I haven't pushed her for details. I'm one of those people who tends to share every little detail, so I'm sure I disgusted her and she's holding back to avoid being like me, ha ha. Do you have a way of testing your blood loss or anemia level at home? I thought that I had read somewhere that there are at-home fecal occult blood tests, but when I called around to local pharmacies, nobody had them and most acted like they hadn't even heard of that. I wanted to test myself to see if I had that going on (I don't have any blood as far as I can see, but like you said, sometimes you can't see it).

 

[Nyx]

I have no idea if you can get at home tests...I don't need them now I actually didn't realize how sick I was till I wasn't...know what I mean?

 

[ameslouise]

Hi Cat and welcome.

I ditto what Joan said - get a second opinion if your first GI doesn't start taking you seriously. There is obviously something wrong, and they just need to keep looking to find it.

In the meantime, you need meds! Something for the pain and inflammation or you will just get worse!

Hang in there. It is NOT in your head!

- Amy

 

[Cat-a-Tonic]

Nyx, I know exactly what you mean when you said "I actually didn't realize how sick I was till I wasn't". I switched birth control methods a couple of months ago (switched from the pill to the ring, as I was afraid the pill was just going right through me), and I felt so much better for a few days immediately after making the switch. I still didn't feel 100% of course and I went back to feeling like garbage after a few days, but it hadn't really hit me how consistently low I had been feeling until I had those few really good days.

Amy: Thanks for your reply. I think my GI is still taking me seriously - he hasn't mentioned the dreaded IBS yet. He just seems really busy whenever I talk to him, like he's giving me the brush-off. I told myself awhile ago that I'd drop him and find a new GI if/when he tried to give me the old IBS diagnosis, and since he hasn't done that yet, I'm afraid to drop him for someone who might say it's IBS and then I'd have to find yet another GI. I think I am going to stick with my current GI, for now anyway, and just be more persistent about asking questions, having more tests, etc.

 

[TLC31]

hi cat have been readin thru a few posts and came across yours im replyin to this one as your story sounds like myn although i ahvent had my tests doen yet thats on the 27th of this month. i have had the bloods and they came backclear.
i have complained of bieng unwell (not myself for a year)
dizzy tired cramps and diaroherra back ache pains. and thats to name a few.
now im wondering if im gonna get brusehd of with ibs? my doc suspected crohns the gi i went to see isnt sure and thinks ibs. (bcus i had gasterntrius in nov last year ) he said that and stress can bring it on
so im assuming if the scope test comes back clear this is what il be told its ibs.
but how do we know it isnt ibs?
im confused between the 2
i have lost a few pounds nothing major and i do not have blood loss.are they not the major symtoms of crohns?
but i have every other symtom.
i guess all can do is wait n see.
this is silly but i been feelin ok last few days and now im thinking when i hav the test it wil show nothin bcus i actually feel ok (well for now) still havin diaorrhea though. and that aint normal. even the back pain has gone and thats norm always present
anyway after all my ramblings on im wondering how yur doing now?? as this post was may its now july so what is happening with you?
tra xx

 

[xoxava]

Hello. I am new to the forum and maybe can't offer as much info as the others. But I can help with the experience. I struggled for years with pains and various symptoms and could never find an answer. I went through several doctors before I found the one I'm at now. My pediatrician told my parents I was crazy and I was making it up. At 16 my current doctor started discovering all these things wrong with me. Im 19 now and on 25 pills for mild crohns. I couldn't handle the nasty chalk prep mix for my colonoscopy because I kept throwing up. I did the magnesium citrate and cloase and it worked fine. My biposies came not non cancerous and my blood test showed nothing for crohns. However my biopsies showed abnormal cells that lead him to believe I have crohns. I hope you find an answer and don't be afraid of going to numerous doctors. There are doctors out there for the money but I'm sure you'll find one that cares truly for your well being!

 

[Cat-a-Tonic]

TLC: Well, it's several months after I originally started this thread and I still have no diagnosis, but I feel like I'm getting closer to one. My doctors are looking into the possibility that I may have Addison's disease, as they've still found no evidence of IBD. My GI was thinking for the longest time that I probably have Crohn's, based on my symptoms (and more recently, the fact that prednisone worked for me) - but all my tests kept coming back normal, and then he had a brainstorm, which is that this could be Addison's. It has similar symptoms to IBD (diarrhea, nausea, abdominal pain, weight loss, low blood pressure, fatigue, etc.) and it also responds to pred. So I'm having a blood test next week to see if this is Addison's. Addison's would also explain why they've found nothing on any of my tests - no inflammation, no bleeding, no narrowing or thickening of intestines, no abnormal cells. I've had blood tests, colonoscopy, CT scan with contrast, biopsies, and they all came back normal. Addison's would explain why! So I'm hopeful that my test next week will shed some light and get me a diagnosis.

As far as IBS vs. IBD, there was a thread awhile back where Regular Joe had posted the diagnostic guidelines for IBS. I specifically rememer that it said that if you have experienced any of the following: weight loss, dehydration, nocturnal diarrhea, or bleeding, then it is NOT IBS. I have had two of those for sure so I do not have IBS. How much weight have you lost? I have lost between 15 and 20 pounds, which is significant for me because I was already thin to begin with, and I definitely didn't intend to lose any weight and I try to eat as many calories as I can when I'm feeling okay so that I don't lose any more. And I've had several bouts of dehydration which required IV fluids. No nocturnal diarrhea and no blood (but again, if this is Addison's, dehydration & weight loss would fit but nocturnal diarrhea and blood wouldn't, so it does seem like everything fits the Addison's pattern).

 

[Rebecca85]

Ibs is a functional problem (the muscles controlling the digestive system don't work in a coordinated way) whereas ibd means there is inflammation somewhere in the digestive tract.

 

[TLC31]

hi cat well i have no idea what addisons is i do hope you dont have it but i understand your need for a diagnoisi as there has to b something wrong.
good luck with gettin one and i let us know outcome.
i have lost 12 pounds up to now at first it was a few pounds but having started to weigh myself every week now im noticing that i am losing 1lb a week without tryin but i wouldnt say it was extreme. im not sure what nocturnal diarheaa means so i couldnt comment on that. i havent needed iv . i did have some blood loss but i think that was thru a tear from goin so much as i havent noticed any since.
tra xxx