Not doing good :(

It has been a little while since I last posted. I am not doing so well though. I had a colonoscopy about 3 months ago with biopsies and it was normal. I have been having issues with intestinal pain and cramping that can at times be very bad for the last 2 years now. I also have other health issues as well. I have had testing done in the last year which includes ( stool tests, blood work, ultrasounds, MRE of small bowel and recently the colonoscopy). None of the tests showed much. my gastro doc says it is IBS likely. I just am having a hard time accepting the IBS diagnosis because my symptoms are not typical of IBS. I mean I have not had the alternating constipation and diarrhea. My main symptoms are Bad cramping pains in the lower intestines and having that " feeling" like I always gotta go( but I usually go once a day). I always feel WAY worse after I have a BM too, where with IBS I always thought most felt better afterwards. Well I don't. I also have the pain ALL the time to varying degrees, not just after I eat. And PAIN is my worst symptom. I have the cramping and sore feelings inside all the time. Heating pad helps a little, it is the only thing that helps a little without giving me all kinds of side effects. I had a 2 month period where I felt better, like pretty good. Well just yesterday out of nowhere I am bad again just like that.

I saw my gastro doc a couple weeks ago and he said there is really not much else to do. I mean he thinks doing more testing would be a waste and would likely just add to my other health issues.( I have also been battling with chronic BV and vaginal yeast issues ever since I had the colonsoscopy)so the gastro thinks I should not have anymore tests right now, my body is just too sensitive he said and cannot handle it. He then said they likely would not find anything anyhow.

But I am in pain and am scared. I mean I know lots and lots of people on here are diagnosed or should I say mis-diagnosed as having IBS later to only find out they have had crohns all along. I mean how accurate are these tests ( colonoscopies, MRE's etc..)?? I mean if they can miss the disease, then what is the point of all these expensive tests?? I am just so bummed out. I feel awful and no one has any answers for me. I mean I have many other issues as well over the last almost 10 years that I have been dealing with too. It is al getting so frustrating and it is hard to live when you are in constant pain and do not feel well 95% of the time.

Sorry to hear.

As far as accuracy. MRI+colonoscopy (+ very important biopsy) is very accurate at diagnosing crohn's disease.

The issue is between intestinal tuberculosis and crohn's disease, which can look an awful lot like crohn's disease, but since it's so rare in the West, it rarely happens, and the biopsy gets immunostained with antigen and histology and granuloma differ too.

But things like confusing Crohn's disease with IBS and UC...I seriously don't know why some hospitals can get that stuff wrong...they really really shouldn't. If they get those things wrong, it's a human error, not the fault of the test, they are completely different diseases.

Maybe get a second opinion.

Ihurt, I don't suppose something like an exploratory laprascopy would be a possibility? It sounds like you've exhausted most other test options. You may have something going on on the outside of your bowels that the other tests have missed - you may also have adhesions or endometriosis that could be causing the pain. I agree with Kiny that a second opinion might be a good bet - you'd get a fresh set of eyes on your case and they might come up with some new ideas, as it sounds like your current doctor is out of ideas. Good luck, I hope you can get some relief and answers soon.

Thanks Kiny and Cat-a-tonic!

I appreciate the replies. I guess I could get a second opinion, but I know a lot of times when you switch GI's they all want to do tests over and I am no willing to go through these tests again, 1) they did not find anything, and I had awful issues afterwards and2) well, my insurance would Never pay for me to have these tests again so soon.

I mean I guess I could go get a second opinion just to see what the doc would have to say. Not sure where to go though, I mean I supposedly have seen the best of the best here in Chicago.

Cat: I have thought about the laproscopy. I think I may have endo but when I asked my gyne about it she said that you can have bowel issues with endo, but she said that they would be bad during your period usually more so and would calm down afterwards. I am on my period now, but I will say that I still can feel just as bad when I am not even near my period. I probably do have some scar tissue from previous surgeries too ( I had a C-section in 1991 and an exploded tubal pregnancy in 1996). I asked the gyne about the possibility of scar tissue causing me issues and she said that scar tissue can cause issues, but usually there in no break or lul in-between, it is pretty much constant no matter what. I had a couple months where I felt no to bad. She said if scar tissue was causing my pain, it would never go away. So I am not sure what to think there. But yeah, endo I suppose is a possibility. I am not rushing at this point to do a lap surgery though. My gyne said it is very invasive and they have to catheterize you for this. Well for me with the Interstitial cystitis, and being so prone to getting bad UTI's she said it would be a big risk for me in terms of my IC may very well get worse. I am not willing to risk that just yet. I may end up going down that road in the future though if all else fails.

Kiny: Thanks for the reply on the tests in terms of their accuracy. I have heard of intestinal TB as well. I mean I am not sure, but my guess is that the GI should have seen inflammation if it were that. You are right, I don't know how doctors can confuse these diseases either. But on here it seems like it happens all the time. I asked my gastro how he could know the difference. His answer was that with crohns disease you can see the damage when you look at the intestines during a colonoscopy. He said they usually take biopsies to confirm it. He said he did not see anything abnormal during my colonoscopy, but he did take biopsies and said they were normal as well. So I am not sure what to think. I mean so many on here said the same thing, that they had colonoscopies and all kinds of tests and were told they had IBS only to find out later it was Crohn's all along. How the hell does that happen?? It is so frustrating. It sickens me to think of all the money they charge to have these tests done and still there are mistakes made.

Ihurt said:

I appreciate the replies. I guess I could get a second opinion, but I know a lot of times when you switch GI's they all want to do tests over and I am no willing to go through these tests again

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I understand. Only thing I want to add is that a second opinion is just a second opinion, the new GI will ask for those pictures of that MRI and colonoscopy and for your blood results and histology slides from the biopsy.

It doesn't mean he has to start from ground 0. There's no hurt in asking. An opinion is just an opinnion, it doesn't come with strings attached.

If you're in pain all the time, you have to keep looking for an answer.

Ihurt, Crohn's is so tricky to diagnose sometimes, and I think that's why some doctors will give up and say it's IBS. Crohn's can manifest anywhere in the digestive tract (so it might be out of the scope's reach, in the small intestine) and it has a skip pattern, meaning the inflammation is patchy - so if it isn't obvious visually, they'd have to biopsy the right spot to find it, assuming it's in the scope's reach to begin with.

I'm in the same boat as you, my GI thinks I either have Crohn's or microscopic colitis, but all my tests have come back normal. MC has a skip pattern too and always looks normal visually, so again they'd have to biopsy the right spot (although at least that one is only found in the colon). So yeah, they missed something somewhere along the way for me, but I respond to IBD meds and we've ruled most everything else out, so it seems I must have IBD - just not sure which one or where it is! And a lazy/incompetent doctor could easily say that I have IBS, since they didn't find anything on any of my tests. It seems like a lot of undiagnosed people end up in that situation unfortunately. All I can say is, you know your body, you know that the IBS diagnosis doesn't fit as your symptoms are too severe, so keep on fighting for proper answers. It's up to you as to whether that means trying other meds, getting a second opinion, having other tests, etc. It's even more tricky when you have other illnesses to contend with, so do what you feel is best for you and your situation.

Thanks Kiny and Cat!

Kiny: Yes, you are right about the second opinion. I don't even think my GI took pictures. I mean I just have the report saying everything looked normal and that the biopsies were normal. I guess it wont hurt to get a second opinion though like you said just to see what the new guy has to say.


Cat: I am sorry you have went so long with no diagnosis. It is terrible to not know what is wrong, I know. My gastro seems to think all my issues are related ( the whole IC bladder, fibro pain, and gut issues). He says a lot of these issues go hand in hand. I mean my gastro doc is Not a bad doctor, just that I think he has run out of options in terms of helping me. I know I am complicated as a patient since I cannot take most meds due to the adverse reactions I get. I have chemical sensitivities so a lot of meds I am unable to take and that makes it hard for the doctor and I realize that. It is just that I don't think IBS can cause this much pain or at least I have never met anyone who has IBS and has this much pain with it. Also I talked to my regular primary care doctor about it and she even admitted that she thinks there are other things and diseases out there besides Crohns and UC and IBS that can effect the GI tract but the GI specialists just do not know what they are so they just pin in on IBS. You are lucky Cat that you have a doctor who is willing to think outside the box and tried different things with you. Most doctors wont treat you for Crohns unless you have positive test results. I know my gastro would not want to due to the risks with the drugs they use. But in your case if they are working for you , that is great. Have they seen any inflammation on any of your tests? My gastro doc tried to tell me that with Crohns there is always inflammation visibly. He tried to tell me that after having the pains in my intestines for the last two years that he thinks something would have shown up on the MRE or the colonoscopy if I had actual Crohn's disease. I don't know what to think, all I do know is that maybe there is another disease out there or even bacteria, virus or whatever that can cause these issues but it is not visibly shown through tests. I just don't know. And yes with all my other health issues it does make it a lot harder to deal with this. I mean one things usually makes the other worse. I am stuck between a rock and hard place for certain. My regular primary care doc said I should Not pursue any more tests at this point due to how badly my body reacts to them. I mean I understand her point there. After I had the MRE of small bowel I got a UTI that would not go away for over a month, it was horrid. Then after this colonoscopy that I had in April, well I am still having issues due to that so it has not been easy. I mean I know I need to figure this out and get some answers, so I will get another opinion. I just don't know where to go with it, I mean I am just afraid more tests are just going to cost me lots of money which I don't have and not show anything and will make me worse off with still no answers. It is a hard call

Thank you both again for the advice and support, I appreciate it.

I am not rushing at this point to do a lap surgery though. My gyne said it is very invasive and they have to catheterize you for this. Well for me with the Interstitial cystitis, and being so prone to getting bad UTI's she said it would be a big risk for me in terms of my IC may very well get worse. I am not willing to risk that just yet. I may end up going down that road in the future though if all else fails.

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This isn't necessarily the case. I've had an exploratory laparoscopy and did not have a catheter. The laparoscopy allowed my surgeon to identify some of my bowel problems - my colon was impacted at the time.

A lot of members here get misdiagnosed with IBS - I did too. However, with the range of tests you have had, I think it is unlikely that you have Crohn's and that it has been missed during testing. When people get misdiagnosed with IBS when they actually have Crohn's, it is usually because the doctor makes the IBS diagnosis before adequate tests are done. Crohn's could be missed if only part of someone's digestive system has been affected - for example, if they've had a colonoscopy but they have Crohn's further up their digestive tract. Since you've had a colonoscopy and endoscopy with biopsies, it really seems very unlikely that you could have Crohn's.

Sometimes there is confusion about the exact diagnosis, for example if there are signs of inflammation in the colon but there is uncertainty over what is causing it, and I think this is what happens with some cases of misdiagnosis rather than a test coming back completely negative as yours have done.

Unfortunately there is no limit for the severity of the pain IBS can cause, and although your symptoms may not be typical, that doesn't mean the diagnosis is wrong. If you need a diagnosis to provide an explanation for your illness, do you think accepting the IBS diagnosis might actually be beneficial for you? Nothing from your test results or symptoms contradicts an IBS diagnosis.

If you really don't think the IBS diagnosis is right, and I think I've said this to you before, but do you think it would be better to try and accept not having a diagnosis? My neurological disease went over a decade without being diagnosed - and having many many misdiagnoses along the way. I have a diagnosis now, but I can't say it's meant that much to me. It's still not curable. Doctors still sometimes tell me my test results don't justify the severity of symptoms I get, so I still sometimes have to put up with being told "it's worse because of stress". I'm such an atypical case and some of my symptoms are still left completely unexplained.

What I have learned is that I am able to say that I have a unique collection of medical conditions. I have an illness that's all mine.

Perhaps it would help you to think like this too? You can still find support on forums like this one, maybe on an IBS forum too? If you find the right doctor(s), you can work on experimenting with treatments to find what helps you most with managing your symptoms, regardless of what it may be that's causing your symptoms. (And not necessarily just drug treatments, you can take the same approach to diet, alternative therapies, or whatever appeals to you to try.)

I don't think you need to worry that with all the tests you've had your doctors have missed Crohn's. But if whatever you do have isn't curable, what difference would having a diagnosis make? It may be that if you can shift your focus from diagnosis to treatment, you have more luck with managing your symptoms than you have at present.

Hi Unxmas,

Thanks for the reply. I appreciate all the support and advice. I hear what you are saying, and I agree for the most part. It is just that I guess with all the medical issues I have dealt with over the years and having been misdiagnosed before with some of the other health issues I have, I just tend to not have faith in a lot of what doctors say or even with some tests since they are not that accurate all the time. I mean do I have IBS, maybe, I don't know. Just for me IBS is not really a diagnosis, just like IC ( Interstitial Cystitis) of the bladder is not saying much, it is kind of name they came up with for symptoms of a health issue they really are not sure about or do not know much about or what is causing it even. I know a few people who suffer supposed IBS( my husband being one of them suffered a bout with it a few years back). Every single person I personally know that has dealt with IBS had way different symptoms than I did. Theirs was made worse by eating certain things and got better when avoiding those things that bothered them. Like my hubby use to be a soda drinker. Well it got bad where he noticed he was in the toilet a lot and especially after he would drink the sodas. Well this went on for awhile and finally he gave up the soda completely and he is ok now, no issues with the IBS. Same thing with some others I know who have it. I mean for me it does not matter what I eat, I am in pain either way. even when I don't eat a lot, I can still be in pain. Usually one with IBS gets some kind of relief when modifying the diet. For me that has not been the case. Also, my diet was very bland before I even started having issues with my intestines. It just makes no sense, but then again, none of my health issues do.

I know you are right about me having to accept that I am sick and that I do not have an answer right now. Believe me, I have been there before with some of my other issues just like you have. I am sorry you suffered with the neurological issue so long and not knowing what it was, that sucks. I mean if I could find something to help me relieve my pain without causing bad adverse effects, I think I would handle it better. It is just because I am in all this pain and not getting much relief from it, well it makes it so hard. Thank you for all the support and help, and thank you for the suggestions,I do appreciate it.

I actually agree with you about IBS not being a "real" diagnosis, so I do understand your issue there. However, just because you don't react to foods in the same way as other people you know with it doesn't mean you don't have IBS - I think it's precisely because IBS is such a general diagnosis that it covers a huge range of symptom patterns. So I don't think you can exclude IBS on the grounds that your symptoms don't match those of others you know (especially since that's a tiny tiny percentage of the total number of people who get diagnosed with it), but I do see why you don't find it satisfactory to be diagnosed with IBS simply because doctors haven't been able to find anything else wrong.

If it's the inability to find relief from pain which is the most difficult thing for you, perhaps the diagnosis doesn't matter so much. So many conditions are not curable. If you ever do get a clear diagnosis, it wouldn't necessarily mean finding a way to stop the pain. So perhaps it really is the best thing for you to focus on symptom management, rather than putting yourself through any more tests for a while?

I know exactly what you mean by your health issues not making sense. My doctors tell me that all the time. I seem to be unprecedented. Doctors seem to react to this in one of two ways: the vast majority react by assuming that I must somehow be lying or faking or fixing my test results - they go into complete denial. Then a small minority actually accept the truth of my symptoms and test results, even though it sometimes goes against everything they've been taught to expect. This small minority marvel at my illnesses. My surgeon uses me as an (anonymous) case to present at conferences, and I have had medical papers published about me. Maybe you need to find yourself a doctor of this latter group?! One who finds your illness such a challenge that he/she will keep trying everything he/she can think of to help you, because they recognise you're one of the most interesting cases they will ever find.

I know the part about not accepting an IBS diagnosis was directed at Ihurt, but I'd like to address it myself as well. As someone who is undiagnosed and has been ill for close to 4 years now, I've seen a variety of doctors. The ones who take me the most seriously are the ones who mention IBS the least. Generally speaking, and in my opinion, IBS is a lazy, lazy diagnosis. A lot of doctors will slap the IBS label on anyone with any type of gastro symptoms. But just because nothing is found on tests does not mean nothing is there or that it's "just IBS". I have an aunt who was recently diagnosed with Crohn's - she was ill for like 30+ years before they finally found the Crohn's (she had multiple scopes, scans, etc). Sometimes it just takes forever to diagnose (I've read that the average is about 10 years to diagnose IBDs) - but that doesn't mean that someone should accept that it's IBS just because a doctor says so. If the symptoms are too severe or it just doesn't feel right, you have to go with your gut (pun intended). I feel like I have IBD - I respond to IBD meds, my symptoms "fit" quite well, and we've ruled most everything else out. But if you just went by my test results and the fact that I have gastro symptoms, you could either say I have IBS or that I'm fine. I've also had doctors try to tell me that it's in my head and/or that I'm depressed and that's what is causing my symptoms. Again, lazy lazy! A good doctor will look beyond the test results and textbooks and actually listen to the patient, rather than slapping an IBS label on someone with gut symptoms and calling it a day.

If I just accepted an IBS diagnosis and went for symptom control alone, and it turned out I really had IBD, I'd be doing a lot of damage to myself by letting the inflammation rage uncontrolled. It's a shame that we long-term undiagnosed folks have to fight so hard to be heard and treated properly by medical professionals, but we do have to fight. If I wasn't a fighter, I wouldn't have had a nice long remission and I'd probably be a lot worse off now. As it was, my doctors made me try IBS meds before they allowed me to try prednisone. Of course the IBS meds did nothing (one even made me worse!) and the pred helped a lot. But I wouldn't have gotten it if I hadn't fought hard to try it.

I guess the main thing is, it's insulting to tell someone they have IBS when their symptoms are so severe. I know my body, I know that massive weight loss and blood coming out of my backside and intense chills and awful fatigue and so much paleness that I look like a corpse cannot be caused by my gut spasming alone - but all that can be caused by IBD. When I tell a doctor my symptoms and he says IBS, I know he didn't listen to a thing I said and he is probably lazy and maybe incompetent. And so I've had to fight, hard, to even be listened to, let alone to get some proper treatment - not just symptom control, but something that actually addresses inflammation. I refuse to not be taken seriously, and with symptoms like mine and like Ihurts, a "diagnosis" of IBS = not being taken seriously.

Sorry for rambling on there, but I hope you get my point. It's so difficult having an illness like this, and doubly difficult when you have to fight not only a battle inside your body every day but also a battle with your doctors. I really, really feel for the undiagnosies like Ihurt - I'm an undiagnosie myself, I started the Undiagnosed Club, and even if/when I get a proper diagnosis, I will always always always have a soft spot in my heart for the undiagnosies, because I feel for them so much and know just what they go through. It's so diffficult! So sorry if I came off as a bit abrasive, that wasn't my intent, but I get a little bit defensive of my undiagnosies and bristle at the thought of them having to just accept an IBS diagnosis. They fight every day towards a proper diagnosis and do not have to accept that it's IBS if they don't feel that's what it is.

Thanks Unxmas and Cat.

Unxmas: Thanks for the response, I really appreciate it. Yes, I think I would feel better if I was able to get my pain under control, but due to all my issues with medications and their side effects I have not had any luck with pain control unfortunately. I tried one med which was called Imipramine it is a low dose antidepressant that is suppose to help with pain. Well that helped some with the pain, but it also messed up my heart so I could not keep on with that one. I also have tried many of the IBS meds like Cat did and they either don't work or they give me awful side effects. My body is just to damn sensitive, I hate it! My body is my worst enemy it seems . Thanks for the advice and help.

Cat: I seriously can relate to everything you have said. It does suck not being taken seriously. I have seen a lot of doctors for all my various health issues and My god, some of them were such bad doctors. I had a doctor tell me once that my issues were because I was a woman and women make a big deal out of everything! I mean that was in the beginning when my whole health started to take a plunge. So I get that. I am glad you were able to find a doctor who listens to you and works with you, that is good. Any doctor who thinks outside the box is a good doctor in my book. No disease is black and white, everyone is affected differently. I don't know what I have, and I honestly do think there may be other diseases out there than can cause the same symptoms as Crohn's but it may not show up on tests so easily. Maybe that is why you have not been able to have a diagnosis either. I mean I think there are other things out there that doctors just are not capable of knowing, these things may be too complex. I am glad that the prednisone helps you. I am sure if I asked my Gastro doc if I could try some he would say ok. The thing is for me steroids are not good since they lower the immune system and make one vulnerable to infections. I am already battling infections and am sure that would get worse if I took steroids. Is your doctor willing to try you on any of the other meds that treat Crohns? I know my GI would never give me a biologic med without me having a concrete diagnosis, I don't think many docs would. But it is so frustrating not knowing what is wrong and having no help or answers. Thanks for the reply and support, I appreciate it.

Cat - I understand what you're saying (and Ihurt, I'm sorry if my post made it sound like I thought you should accept an insulting diagnosis). I know I was very unhappy when I was diagnosed with IBS, because every doctor I saw seemed to assume that IBS was not serious, and therefor I shouldn't mind having the symptoms. However it was much better being misdiagnosed with IBS than when I was misdiagnosed with anorexia and forced into psychiatric care, so I guess how beneficial a diagnosis is depends on the alternative possibilities available, and I was wondering whether an IBS diagnosis might be preferable in some cases to having no diagnosis at all, especially if it meant doctors were more willing to concentrate on treatment.

I've known a couple of people who weren't unhappy with an IBS diagnosis. One of them was a good friend at university. When she told me about her diagnosis, she told me that her symptoms had improved a lot since she'd followed her doctor's advice of reducing stress and eating a healthier diet. I wanted her to say that stress wasn't a factor, because I feel so strongly about that regarding my own symptoms. But she was quite insistent that she really did feel better. Then I met a second person with an IBS diagnosis who also claimed that the IBS programme of stress-reduction that his doctor had put him on had been very effective.

I've wondered whether doctors seem so keen to give the IBS label to patients because there actually are a large number of people who have harmless digestive problems that are related to stress and diet. Perhaps those of us who get misdiagnosed with IBS when we have something much more severe going on are actually a very small minority, and that that's why doctors are so quick to tell us we have IBS.

Ihurt, I know you're in such a difficult position regarding diagnosis, so when I wrote my earlier post I was just wondering whether you might find you are one of the people who is able to find an IBS diagnosis beneficial, or at least more beneficial than having no diagnosis at all, which for the moment seems to be the only alternative. I thought it might be a way of getting out of the horrible place of having to put yourself through tests and having the frustration of not getting any answers. I'm really sorry if it sounded like I was undermining the severity of your pain when I suggested you might accept the IBS diagnosis.

Hey Unxmas,

Oh no, I did Not take any offense to your post at all. I mean I understand what you are saying. I mean as far as stress goes, I do think stress can make any situation worse, that much is true. I mean for instance if one has a migraine, well if they get really stressed out that headache will likely get way worse. That goes with diseases too, I mean if one has an upset gut, well add a very stressful situation to it, yeah, your going to feel worse likely. I do Not think stress causes diseases, but I do think it can worsen an already present disease or make symptoms worse.

At this point I know I cannot really do anymore testing due to the complications it causes. I guess my main goal is to get some sort of treatment that can help me with the pain and symptoms that my body will be able to tolerate.

Thanks for your help and advice, and please know I took No offense at all. I am glad you took the time out to help and am happy to have the support and advice..

Ihurt, my daughter is going through exactly thesame. Some inflammation on tests last year, but now all clear and bloods always good!

I really feel for you. Jaime has passed out twice in a week with pain. IBS? She initially lost 2 stone. She vomits every day. Is in constant pain. Has bleeding, sometimes heavy. She generally feels very unwell. Because her MRE In march was clear they say IBS.. Absolutely NO WAY!

I really hope you find someone to listen and diagnose properly (((HUGS))) xx