New GI undiagnosed me from crohns to IBS, anyone had this?

[Tim]

Hey guys. I'm writing on here to find out has anyone had any problems with being undiagnosed/misdiagnosed and it just causing you to be utterly miserable. I'll give a quick low down on my story again. Early this year came down with terrible vomiting and stomach pain followed by chronic and severe diarrhea sometimes with blood and went to hospital and was sent home from hospital a week later with just a severe form of infectious colitis but possible IBD and had subsequent colonscopy scheduled to double check. The first colonoscopy found moderate patchy inflammation with ulcers all through my colon, after the surgeon who performed my colonoscopy went back and forth from possible Crohns to IBS he decided on Post infectious IBS and said don't worry it will dissapear and left me without out follow up or any treatment for symtoms.

Anyway 2 months later I was still constantly in pain from cramps and had on and off diarrhrea and tiredness and had a car crash from basically exhaustion and stuff from my symptoms and stuff. Anyway this time I was treated by a different GI and they did blood tests and found I was anemic and performed another Colonoscopy and this one showed mild inflammation and the doctor diagnosed me with mild-moderate Crohns and put me on Prednisolone and sufasalazine. Well I was happy to be diagnosed and had a Honeymoon period with the Pred and Salazopyrin and felt great until he started weaning me off the steriods and 5asa's and the symptoms started coming back. eg: tiredness, cramps, diahrrea, headaches, joint pain. So I tried him to change the treated plan because it wasn't working and he didn't help so I changed to a doctor in my area hoping for a better plan. Well this new doctor somehow became obsessed with the idea it was just IBS and not Crohns at all. Even though both my Biopsies are consistent with a chronic inflammatory bowel disease. So he told me not to take any medicines as I did not need treatment and should be fine. So on and off I've been suffering really bad tiredness and bouts of diarrhea and cramps and had blood work done which came back normal. So basically now at his office today the new GI doctor laughed in my face and said he will not treat me for Crohns as he think I only have IBS and I don't need any treatment of any kind, which has made me consider going back to original GI doctor. When I told him if that's all he was going to do and I might as well go back to my old GI he basically threatened me for getting to many opinions and I should accept it move on and ignore it. It's pretty hard to have one doctor very sure you have Crohns and you accept it then another doctors say no you don't and treats you like you're borderline nuts. God, all this indecisiveness from some of these doctors is kinda doing my head in as well, it's such ********. Has anyone had this kind of trouble from their GI's and had to suffer ongoing symptoms without any kind of treatment. I mean obviously this isn't in my head and something is going on and to be told your fine and to not worry almost seems inhumane. Anyone had similar experiences? please share?

 

[dannysmom]

Just unbelievable! Certainly sounds like Crohn's to me!! I thought most GI's would try a biologic (Remicade or Humira) if symptoms come back with the prednisone ween. If the GI is offering nothing, then I would find another GI.

 

[chrisnsteph1022]

I had a similar experience. I was referred to a GI for my scope and was dx with 'classic Crohn's' in the TI. I was put on all the medications and got into remission. In the meantime, I transferred to another GI because I didn't like the first one (poor bedside manners). My new GI weaned me off all meds. About a year later, I started having some symptoms and he did a scope. He said everything was perfectly normal, not even any scar tissue, and that it was IBS. He had copies of the pathology reports from my first scope. It was pretty clear I had Crohn's.

Anyway, I spent 4-5 years wondering if maybe it was some infection and maybe I really was misdx. I had another scope a couple years ago and one of the biopsies showed 'quiescent Crohn's', which I believe means there was Crohn's present, but not active. My GI put me on Apriso to keep it in remission. I still felt like he didn't really believe I had Crohn's, but he was keeping me on meds, so I was happy. Then last December, I flared up bad. Had a scope in January and (his words) 'it was rip-roaring through the entire colon.' Definitely Crohn's! Now I'm still on Apriso and have added Cimzia. I was also on Entocort to get the flare under control but have since weaned off. There's no doubt now that I have Crohn's, but I spent years wondering if it was all in my head and didn't know if I had it or not.

 

[Mayflower537]

Okay, it's one thing to be undiagnosed and have every test come back perfectly normal. But to actually have visible ulcers and pathological findings that confirm IBD and then to be told that you only have IBS??? That is some bullcrap there. IMO you have had a slew of bad doctors. I hope you find a good one.
:hang: Maybe someone here can point you in the direction of a good doc.

 

[Daunting]

I am so sorry to hear that you are going through the same as me.

In May of last year I was told it was mild crohns, I changed Drs because I couldnt stand the first GI (no bedside manner). Now the doctor I am with doesnt believe it is crohns and has been sending me for several several tests which all seem to come back negative, even my colonosocopy showed tiny tiny ulcers of the Ti with a non specific biopsy. Sometimes I wish there was 1 test to that was 100% conclusive.

I wish you the best.

 

[Tim]

Hey guys thanks for sharing with me i really appreciate it. chrisnsteph1022 the first paragraph of your story I almost could have written myself, in a sense regarding the going to a new doctor for a hopeful second opinion only to be given the run around and ultimately let down. I truly feel like a second class patient in this instance for some reason. Anyway, can anyone answer this question. Is it possible to be in a mild Crohns flare and have no obvious markers in a blood test such as CRP,CBC,ESR etc show up abnormal. What I'm trying to say is I had a blood test taken during in a week of diarrhea,tiredness and stomach pain but it came back normal in the sense it wasn't off the charts. Would this rule out IBD even though my biopsies showed chronic inflammation consistent with IBD. I know this seems like a tricky question, but I'm hoping someone with a bit of experience can shed some light for me a little more. My gut instinct is this GI doctor is a ********, but at the same time he's got me thinking whether his zany theories do hold water. sorry if this seem weird. But that's what it is I guess. In situations like this you either laugh or cry. lol. thanks guys

PS: Don't be afraid to answer I'm asking more in the sense of guidance, I'm not looking to hold anyone to their words as diagnosis or anything, i'm still relatively new to this whole IBS/IBD world Seeya

 

[Daunting]

Hi.

I'd be interested on hearing a reply to this as well. Everytime I feel awful my family doctor sends me for blood tests to see if I have an elevated markers and each time I have not had any even in my worse times.

 

[Crohn's Mom]

It's not just possible Tim, it happens with a lot of CD patients. There are a few on here who never had elevated inflammatory markers in their blood work. And others, Dusty's daughter for example, that ALL tests showed normal and then she had emergency surgery and was diagnosed on the operating table.
CD is very tricky, and seemingly very hard to diagnose. But, in your case, you have pathology reports, the biopsies, that you said clearly state IBD. I don't see how any GI worth their weight in gold, can ignore that and say it's IBS ! I'd be finding a new one, or at minimum going back to the one who can at least read reports !

 

[LindaS]

So sorry you are going through this, Tim. I have had Crohn's for 24 years. After my first bowel resection in 1995 I moved to a new state, and my new doctor said it wasn't Crohn's, without any testing or anything. After I'd been diagnosed and treated by some of the leading doctors in NYC and had a resection that showed Crohn's. Needless to say, I switched doctors ASAP. If you can, get another doctor. I think once there is evidence of Crohn's, it is pretty positive that it is IBD.

I hope you can find a better doctor.

 

[allieinwonder]

Welcome to the forum!

You story (and all like it) make me so angry! How can GI's look at those reports and want to tell you its IBS? IBS is such a garbage term, they have no treatment for it...and you obviously don't have that! I would keep those reports and look for a new GI!

I am undiagnosed myself, but all my tests have come back normal. My crazy symptoms have my old GI convinced its crohns, and before he left he said to wait to see if it shows up as it gets worse (wait a year or so and try again). My new GI is back on the IBS crazy train, but he is following my old GI's advice to check my entire small bowel by pill cam. It really sucks to have a doctor tell you your bloody mucous, ulcers eating through your tongue, passing out/blacking out in public, etc is nothing to worry about! These doctors need to realize how crazy that sounds!

I really hope you find someone who puts you on proper treatment!

 

[Welsh-bird]

Hi Tim- as CrohnsMom has said, YES it is possible.
My CRP is ALWAYS 0, even the night before they removed my colon. My bloods don't indicate anything in relation to my IBD. We don't even bother testing it now. The only way to know how active my disease is, is by scoping and biopsies. Not ideal, but works for me.
Don't be fooled by normal blood results.

 

[Tim]

Thanks for the responses guys. At this point all I can say is, oh my god I'm not the only one! I was beginning to think my whole experience with colitis/IBD/IBS was an isolated case and had just made me a little nutty and perhaps my doctor was right and I was just being silly and dramatic thinking it was anything serious. Like having diarrhea and tiredness all the time is not serious,lol. I would have never dreamed finding treatment involved this much hassle and funny looks from some doctors. When I was describing how I felt last week when he took the blood test and how I was in pain and really tired and stuff he would then look at the blood results he took from last week and then smile at me like a was just some crazy person making it all up. When he did that it was one worst feeling ever. I felt awful, but oh well! I've woken up with stomach pains on my right side again this morning which is where my first GI said I was affected with Crohns and It prompted me to re-read my biopsies. The first says: Active patchy colitis of mild-moderate degree with areas of ulceration and of a consistent nature with a chronic process inflammation fits no specific aetiology with any particular IBD but similar in nature to Crohns. Further tests needed. Biopsy no 2 taken 2 months later when I was in semi remission says in the conclusion: Mild Inflammation consistent with Inflammatory Bowel Disease.

I ask myself how is that IBS or post infectious IBS it clearly says consistent with IBD!

As I read this I felt a giggle inside as to how a doctor can perform less than 2 blood test taken both when I felt unwell and just because they come back inconclusive/normal renge, basically read those lines in Colonoscopy reports and use the blood work to contradict its findings and tell me it's only IBS and laugh me out his office. I actually feel sorry for him and his lack of empathy. Like I asked him if it's only IBS then what can we do for the constant tiredness and on and off diarrhea and constant stomach pain. And he said do more exercise. Then I had to explain to him how I struggle to get out of bed those days let alone exercise and yeah. Anyway I won't go on too much more. Just for but just for curiosities sake is there anyone out there that might happen upon reading this that has confirmed IBS not IBD and gets constant fatigue? This is another thing I always get and as far as I'm aware it mostly affects people with IBD as opposed to IBS.

Also, So sorry to hear that similar things have happened to other people, But knowing there's other out there who are braving similar mistreatment from doctor inspires me to get this under control. It's shocking how some of these so called medical professionals treat us like numbers and chuck us aside like we're liars just because a few blood tests came up normal/inconclusive. Disgusting!

 

[Jennifer]

I'm sure constant fatigue is quite possible with IBS especially when dealing with chronic diarrhea. That would make anyone fatigued sine you're not absorbing any nutrients and are losing a lot of water.

I don't see how raised inflammation, ulcers and bleeding lead to a diagnosis of IBS. Doesn't make sense. It doesn't matter how many opinions you get just as long as you get the treatment you need.

 

[AndiGirl]

I agree with the statements made. It took a while for my doctor to diagnose me. There were some glaring facts that he had glossed over originally because the ultrasonographer had written, "Otherwise unremarkable findings." I was so frustrated with the stupid diagnoses of IBS. I was have chronic diarrhea, frequent nausea, pain after eating, body sores, mouth sores (my dentist made a note of them), joint pains, fatigue, weight loss. I decided to request my medical chart. I made copies of all the gastro-intestinal tests and results. It turns out that many of the so called, "normal or unremarkable findings," raised a red flag with me. These were things that they had failed to read because of generalizations: thickening of the distal wall of the sigmoid colon and ascending colon; one and possibly two diverticula; minor inflammation of the terminal ileum. When I pointed this out to my doctor and my GI doctor they both agreed that I needed more testing, and insisted that I have my blood sent to the Prometheus Lab. An ultrasound, colonoscopy, and positive Prometheus Lab test, ultimately led to my diagnosis.

I was pretty angry because my grandfather had lost his entire colon due to severe Crohn's Disease. He lived in rural Alaska where medical care was limited, and back then 50s-70s little was known about CD, especially in Alaska. I was polite, but I said this to my doctor, "Were you waiting to find huge ulcerations? By that time the disease has already caused a lot of irrepairable damage. I mentioned my grandfather, and said that in this day and age, one shouldn't have to get to that stage before they get treatment and relief. Unbelievable! Why must CD be so dang hard to diagnose.

Your symptoms sound a lot like CD to me. I think it is asinine that your doctor is willing to fall back on the catch all, "IBS." I'm not even sure IBS really exists. Normal digestion should not hurt. If it does on a regular basis, that is a sign that something is wrong. My theory is, "IBS," is the diagnosis when the doctors can't find, don't know, or don't care to know what the real problem is. Sorry to vent. You need better treatment.

 

[Tim]

I think the irony if there is one is some GI's must think they're doing a patient a favour when they say it's only IBS as if to spare them from a definite dignosis of a chronic illness. The worst and craziest part is at least when I'm on the Crohns meds I get some relief with the pain, tiredness so I was actually arguing I had Crohns, doesn't that seems silly really. Once a GI gets it into his head it's IBS even if its not, seems like the patients doomed to under treatment.

Also, I've also noticed some, well alot of people on here take some form of antideppressant. I know some of these are mainly for pain and how they have a use in regulating gut motility. But IBS/IBD regardless they are both very stressful and it slowly chips away at your level of happiness and on top of considering how the stomach is considered the second brain and if that's out of sort it stuff the rest of your body up and how importanat proper treatment of the GI tract is basically, you'd think doctors would show more diligence and empathy and not have this untreatable cop out called IBS. Thanks for the input and support guys

 

[lookitsjen]

i totally understand your frustration. Starting three years ago I started having really bad constipation and bleeding so my doctor said i had hemorrhoids and to change my diet [because i am a junk food junkie] and she gave me suppositories. i used those but didn't really change my diet. i would do it short term but ultimately go back to eating crap. so over time constipation and bleeding got worse and she said the same thing. then i would get bouts of constipation followed by diarrhea so i went back and she said I have ibs and it would go away when i change my diet. then about six months ago i went to the bathroom and was gushing [literally gushing] blood out of my butt, freaked out and saw the doc teh same day. she looked inside and said I was really inflamed and that my hemorrhoids were really bad and that I MUST go on a high fiber diet. i was so freaked out i listened to her and once i started doing all this fiber i started getting really sick so i cut back went back to my normal food but was still really sick. having diarrhea multiple times a day for about a week straight. went to doc but she wasn't available so they gave me her sidekick practitioner. I told her i had researched crohn's and that my grandpa had it if she could test me. she said "if you look up any disease you'll match all the symptoms, it's in your head" then she said that since I go to San diego state university [known as a party school] and that I'm 22 that I MUST HAVE gone to tijuana, ate some bad tacos, drank too much and got food poisoning. then she poked my stomach and said i was fine. no tests, nothing. over the last six months everything got worse and worse, vomiting, diarrhea, and lost 35 pounds. i am 5'8 or 5'9 and only weigh 115 pounds now which is pretty dangerously low for me. I'm anemic. finally saw a gi specialist and he did a scope said i have anal crohn's. things didn't work out with him so i came to hospital where i am currently at and gi here did colonoscopy. said i have an extremely severe case of crohn's that has basically taken over all my insides not just anal region and asked how my doctors didn't find out earlier with all my symptoms. just takes a lot of work to find a good doc. sorry this was so long, kind of using it as a vent >_<

 

[Tim]

Oh my god Lookitsjen, they did it to you too! I can imagine how you must have felt when the doctor said it's all in your head and you've just eaten bad tacos, how presumptuous and insensitive of them. I'm from Australia so was thinking maybe it's an aussie doctor thing, but it's starting to look like normal doctors's and GI everwhere have a way of brushing off most GI problems as IBS, they're too technical and Crohns is not textbook and I literally feel sick to my stomach how they get away with doing this and leaving people ill and possible in a positon for it to progress to a worse state. Like they seem to act like if we have diahrrea,tiredness and the dreaded sensitive tummy aches and pains it's something we should learn to brush off and suffer in silence. I hope I get my treatment plan sorted soon and I also hope they finally got you on a decent treatment plan now they finally diagnosed it properly. Did your early doctors do blood test or anything or did they just say hemorrhoids and IBS without any test? If they didn't, that's almost worse than my story. I really empathize. Thanks for your response

 

[littlemissh]

Just another one here who has normal crp and esr. Studies show about 25 % of crohns patients can have normal inflammatory markers despite active disease. I have once had an elevated esr, never crp even when I was bleeding profusely, vomiting, losing weight etc etc.
So if he tries to tell you normal inflammatory markers mean no active disease, suggest he looks up the latest guidance from the american gastro society and ECCO (european consensus on the diagnosis and treatment of crohn's)the european equivalent. I have copied the section from ecco stating this fact just in case I ever end up with a GI who doesn't know me.
As with welsh bird, my GI doesn't bother with crp now. In my case a we bit more difficult as my disease is in my jejunum and proximal ileum so scopes can't get there either...so we go by symptoms...not ideal but thats crohn' for you!

 

[Tim]

Wow Littlemish! Thankyou, that almost confirms the suspicions I've had about his theory all along. I knew he was being shory-sighted telling me that, as I had already been diagnosed with Crohns by my preivious GI and know in my heart I have it, it doesn't fit IBS symptoms to me at all. I am not going to let some GI trivialise my symptoms as though they are non-existent just because the blood test are relatively normal. I mean if a biopsy is consistent with IBD who cares what the bloods show it's obviously not IBS and needs to be treated. Do you know where could I get a copy of this ECCO book, is it only available in a textbook format or can it be found online? Don't these doctors do any revision on new studies and stuff,lol. I admire your spirit Littlemish! Great reply

 

[littlemissh]

It is a guidance protocol/paper. I actually got it as an app for my iphone - ECCO guidelines.
ECCO's guidance for doctors ...all you need to know about IBD. It also covers crohns and is the latest european guidance. Sets all the evidence etc.
If you google it 'european evidence based consensus on the diagnosis and management of crohn's disease'. I am not very computer literate so won't attempt links etc!
If you can't find it let me know . Its definately available as an app though.

 

[lookitsjen]

yeah they did a few blood tests and stool sample. the most ridiculous thing was i could see mucus and weird yellow balls [not corn- these things were like balls of dough but bright yellow] in my stool sample and they said everything including the sample came back normal. i'm starting to wonder if they even looked at my sample and blood tests or just "lost" it and *********** their reports. my new GI at the hospital is wonderful and has a treatment plan for me all planned out already so i can see her in her private office, but i still need to find a new general doctor. the best advice i can give is to be persistent and demand the treatment you deserve. if they refuse find someone else until someone listens. good luck

 

[Nico85]

Im the opposite, ive been diagnosed with ulcerative colitis then colitis, then proctitus then finally crohns, but every time i go back and ask what ive got the doc tells me something different, then a year ago he told me it looks like my colitis was burning itsself out and ill probably have nothing soon, then i got a bit of narrowing at the tail end and from me having "nothing" i was put on preds. IBD is genuinly an extremely complex disease and there are alot of similaritys and differences to IBS.
Im genuinly starting to think i have IBS and not IBD, because reading lots of posts on this forum i dont have most of the symptoms of crohns, possibly more IBS symptoms such as constipation, bloating, diorreah etc, but i dont get any pain or nausia.

Im sort of at a loose end aswell lol

 

[DustyKat]

Hey Tim,

Both of my children have CD and they each present very differently.

My son can look fine on the outside but his bloods tell a very different story. My daughter on the other hand is the exact opposite. Has the outward physical symptoms but the tests reveal nothing.

Sarah did not have the more invasive tests, scopes, in the lead up to her diagnosis as IBD was not on the radar. She mainly had upper abdominal pain for 99% of her pre diagnosis time with vomiting and headaches. No diarrhoea, no blood. Right up until the night before surgery all her blood results were normal, including ESR and CRP, normal abdo X-rays and one week before emergency surgery, for a ruptured and infarcted bowel, a grossly normal CT scan. The CT scan was done in hospital whilst on a short stay for queried Pancreatitis but that turned out to be a red herring.

Sarah was unwell for 18 months prior to diagnosis. Her legacy was Matt had a suspected diagnosis within a week and confirmed within two.

Dusty. xxx

 

[littlemissh]

I was very much like Sarah, Dustys daughter. Initially my only symptoms were only ruq abdo pain, major weight loss and vomiting intermittently. Lots of tests revealed nothing. It was about 1 year after all these symptoms started that I developed the black tarry stool, diarrhoea, so became very anaemic etc and then they did the pill cam, and the rest is history.
Because it can affect anywhere in the bowel to varying degrees and severity, the symptoms can vary hugely which is what causes diagnostic issues I guess.

 

[archie]

Hi Tim first bit of advice is get a new doc, you've already been diagnosed with CD and unless your about to make history as the first person cured from it, you still have CD. Get the doc to put your diagnosis in writing it might make him a little more cautious. Your also on pred which might be giving you the normal blood tests after all it is used as a treatment. finally when I had the perforated bowel my bloods were completely up the left (CRP >280) i've had surgery to fix that and recently had my bloods taken and all normal even my B12 levels. Went for a review scope on thurs and it looks like I have some ulcers / active inflammation back in the TI, so don't take your blood results as the only test it has to be in conjuction with other investigations and your physical symptoms. Medicine especially IBD is not black and white and no 2 people will be the same. I am glad that IBD is not over diagnosed or diagnosed incorrectly, however there are many people who have been missed out during the process, and to be told it is in your head just infuriates me!! I hope you get some answers soon and some relief from your symptoms.

 

[Tim]

Thanks guys I genuinely appreciate your thought,opinions and you all sharing your own personal stories/battles. I feel like similar to alot of you guys especially Looksitsjen, Littlemissh and Dusty Cats daughter in that I know I get the symptoms but my blood work isn't overly elevated from those times. I think the highest WBC count I had recently when I was mini-flaring last month was only about 15 which is only slightly high but I still had pretty bad diarrhea and pain, although no blood but definitely mucuos. It scares me that it's not just an isolated case and doctors are fumbling around not properly treating people. But at the same time I'm strangely comforted I'm not the only one who's been through this. I understand some doctors might not be prone to hasty diagnosises but to read 2 previous biopsies from a person that suggest IBD and then take a blood sample and then go on to completely ignore the pathologist colonoscopy reports is absolutely insane to me. I will add this too in case this was part of the reason in some of you guys other stories, the new GI that undiagnosed/misdiagnosed is quite old and in fact I was talking to an ER nurse when I was there the other day about this situation and she mentioned how this particular doctor was a nice man but getting a bit too old for his job in alot of the hospital staffs opinion. So I am trying not to take it too personally in case I just got a semi-senile doctor, despite the frustration and misery that could have been prevented. On the other side of the coin my diagnosing GI was a much younger and seemed more intune, looking back retrospectively.

Oh and to Archie that was my biggest frustration how my doctor said my blood are normal so I must have been fine, maybe the blood was fine but I had the typical pain in my ascending-transverse colon/right upper quadrant which is the most affected part and I swear if he was smart enough to scope or something similar like your doctor was I would have been truly shocked if he still found no abnormalities, because something was definitely going on down there. Anyway thanks so much to all you guys replies so far.

Obviously I should've stuck it out with my original GI and need to go back and see him and I think I will at least try and get it in writing too this time just so this doesn't happen again if I ever need to change GI for some reason. Funny story though how this actually has played with my head I have had some diahrrea and loss of appetite today and my friends earlier offered me some pizza for dinner and I had to say no thanks because of my upset stomach and when they asked why what's the matter with me, my brain froze because I did not know whether to explain the reason is because my Crohns is acting up or IBS was acting up and I'd lost my appetite that's how confused I've become, it's ridiculous, but oh well, lol! Anyway, Thanks guys - Tim

 

[archie]

One thing to add when I was initially ill before I was diagnosed my bloods were all abnormal they kept me in hospital for 2 nights then sent me home told me I was fine 3 weeks later I had a perforated bowel lucky for me I ended up in a different hospital so my point is even with abnormal bloods they still don't do anything!!

 

[Tim]

Yeah I had that too, I went to a public hospital on a Sunday afternoon passing blood and vomiting really bad loads of pain. they gave me a bag of fluid, anti nasuea tablets then sent me home saying I will be fine by the next morning. Next morning I went to a private hospital ER and I was off the charts and they admitted me for a week. that was the most painful night of my life between the public hospital and private hospital admission, I'll never really forgive the public hospital for discharging me in that condition. 3 weeks later the public hospital sent me a letter saying they found abnormalities in my Xray and I should get a check up. I was like, no **** you're telling me this NOW! I had no idea that some many people would have had similar mistreatment. Obviously in diagnosing illnesses it can't all be black and white but still can't they be a little more diligent. It's truly shocking Archie, unbelievable!

 

[xJillx]

Wow. I have been going through the same thing, but I have kept it to myself, because I thought it sounded insane. I was diagnosed last summer by colonoscopy after passing mucus for several weeks, which was my one and only symptom at the time. My GI found inflammation and small ulcers in my TI and rectum, though biopsies were inconclusive. I started treatment a few weeks later after I developed more symptoms – urgency, abdominal pain, & irregular BM’s. But I continued to be in pain and sought a second opinion. My new and current GI thought I might have IBS on top of IBD and prescribed an antispasmodic to address the pain, which did help. But now she thinks I maybe had an infection last summer, which left me with post infectious IBS. However, I continue to have lots of issues with my rectum with pain and pressure. Granted, scopes/biopsies show nothing, supporting her theory. I started to believe her myself. But this week I am flaring, in and out of the bathroom many times with lots of mucus and blood. GI still doesn’t say it’s Crohn’s being that this week’s scope showed normal. But I just don’t think this is IBS. If it walks like a duck, talks like a duck…it’s a duck!

Thanks for posting, Tim. I guess we’re not alone in this!

 

[Tim]

Hi xJillx, Thanks for posting. I know what you mean I nearly didn't post this either cause it seems a bit too weird. A tad frustrating. Hope you feel better from your flare. It's a strange world to get help with GI problems, but hopefully we'll all get there,lol. I'm so not a fan of this whole IBS paradigm and how it's like the scapegoat for doctors who can't find the time to properly treat anything that strays from textbook. It's a weird situation, maybe my feelings would be different if IBS had known successful treatments. Cause like you too some of my symptoms I just can't shake on its own. Specifically the tiredness and weird stomach/bowel sensations and pains. Hope you feel better soon too and Thanks for the reply

 

[Grant]

I went from 1983 to 1985 with CD but was told repeatedly it was IBS. By the time it was diagnosed I was chronically anemic.
One of the RN Dr's I saw, his tone was such that I was left in no doubt he thought I was malingering. Good job the RN had a strict code of discipline otherwise he may well have received a punch on the nose!
So when it was diagnosed finally I was relieved because I's started to believe it was normal to pass blood, have chronic diarrhoea etc.
Rgds
Grant

1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection
Currently got yet another stricture.

Been on Azathioprine & Pred
Currently on Entocort 6mg every day
Humira 40mg every two weeks
Calcichew
Pentasa 4gm daily
3mthly B12 Jabs

 

[xJillx]

@Tim - Yes, IBS is certainly the scapegoat. I think part of the reason is doctors are covering their butts. If they have even the slightest doubt it's not Crohn's, they fear a lawsuit if they misdiagnose. Also, treatment options are not to be taken lightly, so they want to be 100% confident it is in fact Crohn's. By no means is this an acceptable reasom for their actions, but it's the only conclusion I can come to.

 

[Tim]

Hey xJillx, yeah I totally understand that and can see their reasoning in the sense they (the doctor) have worked hard to get where they are and don't want to end up getting sued or put before a medical board and have their license to practice medicine revoked for misdiagnosing people if that's the case. I suspect this doctor of mine was overly by the book and in some ways not by the book at all, if that makes sense. What I mean is, if he has any patient that presents with atypical symptoms that don't completely align to a classic case of an IBD patient he seems like he will throw the IBS label everytime. Hey I'll admit, if I were in his position I might occasionally be guilty of erring on the side of caution as well. But generally my expectation is to be treated how I would treat others and If I was him I would not let my patients go until they either presented with their symptoms basically gone completely or at least to a point where they were telling me they felt things where under control. I guess it just comes down to the doctor, some are sticklers who won't look past the obvious while others are more intuitive and dig a little deeper and go out of their way a bit more. These types I think are the real doctors/healers. Unfortunately the latter is fewer and far between. I guess time is also an ultimate factor in diagnosing in that if it is Crohns it will obviously progress more so than a case of IBS and would become too obvious to ignore. But any doctor that works on that methodology shouldn't be allowed to practice!

 

[KWud]

Hey Tim

I'm in a similar situation. I was diagnosed with crohns in 1994 and after getting the disease under control I have been very lucky only to have the odd "off" days. 6 months ago I started with a bad flare which I'm still having. I've had an MRI, Endoscopy, White Cell Scan and failed Colonoscopy. I was put on prednisolone, then Budesonide once my symptoms were getting slightly better and now back on azathioprine (symptoms are worse again now). My GI has reluctantly put me on Azathioprine because he believes my problems are caused by severe IBS on top of a mild? flare of crohns, oh and I have a stricture now in the area of the terminal illeum. The pain I get is horrendous, localised at the illeum and feels like I'm being stabbed! The GI tells me strictures don't cause pain and my crohns is not active in that area, it's only mildly active on the left. If this pain on the right is IBS I'm a donkeys arse!!! My bloods are normal also. I feel like **** everyday and it is seriously affecting my quality of life! I also pass lots of mucus (sometimes bloody), have a distended stomach (look pregnant) and have waves of nausea and dizziness!!
IBS?!! I don't think so!



Paula
x

 

[Tim]

Hey Paula, For your doctor to tell you that your flare and stricture is not causing pain and nothing is active there is something very wrong with his attitude. I've always thought IBS was something people get when they were too stressed or had an allergy to particular foods and when those two things where avoided the problem would solve itself. I'm going to take a stab in the dark and say maybe it's time the best GI's of the word sit down and go over cases like this and make a new name for a new IBD that is in the same class Crohns, UC or Celiac but different. No matter what I eat regardless I've been getting too many symptoms mind you some aren't as bad as the other. But yeah, IBS is definetly a term people use to describe a problem that is not too much too worry about, I totally get your frustration too. I'm just going to change back to my original GI who diagnosed me, he is more expensive. But I guess you get what you pay for and I'm so sick of **** doctors

At the moment I've upped my dose of Prednisolone temporarily and I feel less like **** and more energy. I still get occasional Diarrhea but the tiredness and pains are more manageable this last few days. I hope you're GI and your meds start working better towards helping you, especially if you're in pain too because that's so not cool to have to go through that. Hope you feel better and get well - Tim

 

[KWud]

Thank you Tim I totally agree with you I think I may have to go private to get to the bottom of my probs. To hell with the expense, quality of life is more important than money any day of the week I hope you're feeling better soon too Tim. Hugs

Paula
x

 

[Tim]

No worries KWud, thanks for your replies too I was diagnosed in a private hospital and yeah I'm only just realizing now that switching to a public GI like I did was the biggest mistake. He was cheap for a reason, lol. Good luck to you too - Tim

 

[mike316atl]

Wow! I think many of us are going through the exact same thing you are.
It all sounds way too familiar with Crohns and UC.

Hope you feel better soon.

I still dont have a clear cut diagnosis either. Im weening off prednisone at the moment.
I have "significant" ulcers and inflammation in the TI and possibly narrowing verified with cat scans, colonoscopy, and small bowel follow-through.

I feel everyone's pain on being undiagnosed or misdiagnosed.

 

[archie]

Originally I went private as I'd been in nhs hosp and told I was fine then I went private and had a CT scan as I wanted to rule out anything sinister the radiologist said it was Ibd but the GI was a bit more cautious with a diagnosis until way down the line even after the perforated bowel he still questioned it. after a string of tests he really didn't commit to a diagnosis until after a colonoscopy and even that didn't show anything except an inflamed TI. After surgery it was confirmed via the pathology report. Even private some GI's are very cautious with diagnosis esp if they don't specialise in CD, my GI specialty was liver disease!!!!! it really is a difficult disease to diagnose. I hope you don't need surgery to confirm a diagnosis but what I'm trying to say is even when all the tests point in one direction some GI's like to have it in black and White before they diagnose and others don't. Hang In there it can be so frustrating.

 

[sunflower]

You aren't the only one that has been diagnosed and undiagnosed and diagnosed again. I was first diagnosed in 1992. Since then, three other Gastro's have looked at me and confirmed that diagnosis, along with a surgeon and an internal medicine guy.

I was un-diagnosed a couple of years ago based on the gene testing. I was having horrible pain and bleeding, but this doctor didn't think it was Crohn's. So, he did the gene test and undiagnosed me. Weird. When that doc then decided I had necrotic colitis, I changed doctors quick! There was no pathology that pointed to that diagnosis. They just didn't know what was going on.

My MIL told me to try not taking the Metformin and I got better within a few weeks. I was not having a Crohn's flair, but that does not mean that I don't have Crohn's. Who knows what would have happened if I had stayed with that doctor. I probably would have lost my colon - for no good reason! Then my disease would have spread!

If it doesn't sound right to you, try another doctor. You know yourself.

My Sed Rate rarely goes over 27 any more. It was really high when I first got diagnosed, but it doesn't go up as much now. I tried my CRP this last go around and it was high. I don't remember what it was now. I didn't check my sed rate. I should have, though, just for grins.

My symptoms certainly do not mirror my bloodwork. I have had some of my worst flares when my bloodwork looked good. The doctor would do a colonoscopy just to get me to be quiet. Then he would say, "well, you don't look so good." They didn't think I was having a flare this time, either, because I am constipated - not having D. You just never know with this thing.

I think I am rambling again.....

 

[dragonfly]

i was once told that i was crazy and it was all in my head, this dr actually told my mom i must like the attention!! dr alexander from the cleveland clinic to be excat. i had just had sugery to CURE my UC and had nothing but problems during the 3 months waiting for the reserve surgery and even more afterwards when they finally found out it was crohns NOT UC. i am sorry that a professional would make you feel like that, you need to find another dr. dont get me wrong there are many good doctors out there but these rude doctors really give them all a bad name. its so easy for a dr to tell you that "it must be in your head" when they are not the ones feeling any of it!

 

[Tim]

Wow guys, I definitely don't feel alone and I'm sad that this is such a troublesome issue for alot of people particularly some of you who have responded with more severe cases that resulted in needing surgery. I've gone back to my Diagnosing GI's treatment plan of prednisolone and salazopyrin and feel much better. I don't care what it is whether it's crohns or some medical anomolie as long as I'm feeling healthy and treatment is safe I'm a happy guy. @ Sunflower, Amazing how your blood show up normal in a flare. same as me. still no reason for them to dismiss on that basis. Thankls for the reply guys