Crohn's Diagnosis Retracted

[xJillx]

Got room for a new member? My GI has retracted my CD diagnosis. Here’s my story:

In spring of 2010, I started passing mucus. I dismissed it for several weeks, until I had a 48 hr period in July when I was really sick. I was feverish, in and out of the bathroom with loose stools, and mucus & blood. So, I stopped putting my head in the sand and set up an appointment with a local GI. I immediately had a colonoscopy, which showed inflammation and ulcerations in my TI and rectum. Biopsies were normal, but my GI basically said I had Crohn’s. I started Lialda a few weeks later after more symptoms appeared, such as urgency and abdominal pain.

I continued to pass mucus with traces of blood and wasn’t feeling any better, so I decided to see an IBD specialist in Philadelphia. I have had numerous tests: lower bowel series, CT Scan, MRI, pill cam, flex sigs, and most recently another full colonoscopy. All results (biopsies included) have been normal except for some very mild inflammation in my rectum which is only visible during the scopes.

So, I just got off the phone with my GI about my recent colonoscopy biopsy results, which were normal, as well. My GI has decided that I don’t have IBD, and believes I could have had an infection last July that has left me with “post-infectious IBS”. She says all of my symptoms (even the blood which could be caused by irritation) can be explained by this diagnosis. So, I am to stop the Lialda and take a round of antibiotics called Rifaximin.

I just don’t know what to think anymore. I have been a member of the forum long enough to know this disease is difficult to diagnose. However, my GI is so confident I don’t have IBD based on all my normal tests. So, I don’t know what to believe. I certainly don’t want to get my hopes up either.

With all of this in mind, I have decided I am going to follow her recommendations, and see where it takes me. If the antibiotics help, well then maybe it isn’t IBD. But if I get worse after stopping my Lialda and taking the antibiotics (I am pretty scared about this possibility), then I think it’s clear I do.

Wish me luck.

 

[chrisnsteph1022]

I went through the same thing. Spent 6 years in remission, during which I had a couple scopes that were completely normal. Just had some IBS-like symptoms. GI thought maybe it wasn't Crohn's after all, but just an infection. It flared back up last November and it's definitely Crohn's now. I hope that doesn't happen to you, but I know how frustrating it can be to come to terms with the diagnosis then have it taken away. But it would be great if it never came back!

 

[xJillx]

I went through the same thing. Spent 6 years in remission, during which I had a couple scopes that were completely normal. Just had some IBS-like symptoms. GI thought maybe it wasn't Crohn's after all, but just an infection. It flared back up last November and it's definitely Crohn's now. I hope that doesn't happen to you

I am really scared this may happen. But I guess I have no other choice but to find out.

 

[Crohn's Mom]

This must be pretty frustrating Jill .. my goodness, it's bad enough to know you have IBD, and bad enough to think you have IBD and no diagnosis, but to have the diagnosis ~and more important, the treatment~ taken away and to be left in limbo while you wait...ugghh...how awful.
I'm sure you would be more than happy to not have IBD after all, but I'm sure it's scary to go off of the Lialda and take the chance of getting sicker. I've seen a few of your other posts lately and I'm sorry you're on this roller coaster with us now.

When I was reading this post I had to look up Lialda because I wasn't sure what that was. It caught my attention because my GI doc was talking to me after my colonoscopy the other day and suggesting that he thinks it's probably IBS with me, but he was saying we may give Lialda a try and see if it helps after the biopsies come back. Now I'm really confused since I am reading that you are in it for Crohn's, and then I look it up and find it's for that and not IBS. Makes me wonder if my GI saw visible (even mild) inflammation but didn't want to say anything until biopsies came back ?

I wish you the best of luck with the antibiotics, I hope they do the trick for you and you don't end up worse off ! Hang in there !

 

[Del]

Thats great news Jill..
Go with the flow on this one.. No ifs and buts...stay positive.
Dont be scared either!! Its not just about meds....your giving me hope today, and today is always what it is about..
Take care...

 

[xJillx]

@Crohn's Mom - Yes, I am scared at the possibility I may get more sick. But I guess it's a chance I am going to have to take to get to the bottom of this. If your GI is so confident you don't have IBD, I don't know why he'd put you on Lialda. There sounds like he could have some doubts. Part of the reason I am starting to slightly doubt my CD diagnosis is I don't think my GI would stop my treatment if she wasn't very confident in her theory.

@Del - I am trying not too get too excited just yet. But thank you for the kind words.

 

[Cat-a-Tonic]

Jill, this has got to be so frustrating, and I'm sorry you had to join our little club for the time being. Was Lialda working for you? If so, I'd fight to stay on it. I just started on Asacol recently and had to fight to stay on it, my GI wanted to take me off of it (he told me to take Pepto Bismol instead, which is pretty insulting!). If it works for you, or if you notice more/worsening symptoms upon stopping Lialda, let your GI know. The 5-ASA drugs like Asacol and Lialda are really mild that it certainly wouldn't hurt to keep you on Lialda if there's any question that this might be IBD, which it certainly sounds like it could be if your initial scope showed inflammation and ulcerations!

I don't know much about post-infectious IBS specifically, but I know that the regular old version of IBS does NOT cause inflammation, ulcers, nor bleeding. You might want to think about getting a second opinion!

In the meantime, I hope the Rifamaxin works well for you. I believe there's at least one member of the Undiagnosed Club who has been on that med and she did pretty well with it. Hopefully she sees this thread and can tell you more about what to expect.

How are you doing with all this? I can imagine it's pretty tough to wrap your head around having a chronic life-long illness and then being told wait, it's something else. Do you think it's IBS? If IBS doesn't sound right to you (and I must say, it doesn't sound right to me!) then I encourage you to fight for a proper diagnosis. I know it's tough, I can't imagine how hard it must be once you've already been through the diagnostic process. But if it were me, especially with bleeding as a symptom, I wouldn't settle for an IBS diagnosis. Just my two cents. Hugs to you and I hope things work out one way or another!

 

[Mayflower537]

Well, for what it's worth, no IBD was found in my case, but Xifaxan (Rifamaxin) has been pretty good to me. I finished my second round in January of this year and I have had far fewer problems than I used to have. I had one very short-lived episode in May and other than that, pretty much nothing unless I'm on my period. I think it's one of those treatments that is used for both IBS and IBD, so either way you may have some good results. I sure hope you do, and that being off the Lialda isn't detrimental to your health.

Can infectious IBS cause damage to your intestines? How does your GI explain what was seen in your original scope? I didn't think any form of IBS could actually cause visible changes in intestinal mucosa.

 

[Mayflower537]

LOL Cat, posting again at the same time.

 

[Cat-a-Tonic]

May, once again great minds think alike! And you were the person I was referring to who had been on Rifamaxin. So I'm glad you saw my post!

 

[xJillx]

Thank you, Cat & May, for your kind replies.

@Cat -
I am not sure if Lialda is working or not. I have daily symptoms, but each day's intensity varies. I can have a really good day when I have hardly any symptoms with 1 BM (but my BM's are never "normal" but usually on the thin side, loose, with mucus). But I can have really bad days with pain, rectal pressure, numerous BM's, and mucus with spotting of blood with and apart from a BM. But I have never had a really long episode (knock wood). It's like a few bads (2-3 at most), followed by a few ok days, then good days, etc.

My GI doesn't deny my very first scope looked like possible IBD with inflammation & ulcers in the TI and rectum. However, she is suggesting since the symptoms came on quickly with no issues prior, that it could have been a GI infection (I forget the exact infection name she said) and this infection has left me with this "post-infectious IBS".

How am I feeling? Jeez, I feel like a yo-yo at the moment. I keep going back and forth. I keep asking myself, could it just be IBS? Of course, I would be beyond thrilled to not have IBD, but I don't want to really get my hopes up; I can't go thru the moarning process all over again. There is clearly something seriously wrong with my GI tract, and I my symptoms certainly align with Crohn's. And of course, bleeding doesn't occur in IBS. However, I should be clear, the blood is usually minimal, only dots visible among the mucus. So, my GI thinks it could be caused by straining or the frequent BM's; she has an answer for everything. So, I just don't know. I really don't. Hence, why I guess I'll give this a go.


@May - Oh, I hope I see an improvement with Rifamaxin like you! How soon did you see a change? What are your symptoms? I must admit, I haven't visited the Undiagnosed club much (up until today, I thought I was diagnosed!). I'll have to read up on my fellow members.

And you are right, IBS doesn't cause damage to the colon. However, each scope since my first in July 2010 have been normal. Only "red areas" that could be possibly be "mild inflammation" has been seen in my rectum in recent scopes, which my GI says can be caused by irritation with IBS. So, being that only my first initial scope showed true inflammation, my GI is sticking to the fact I had an infection at that time. Which, I might add, I just learned today thru our phone convo my initial biopsies did say "possible infection".

 

[Cat-a-Tonic]

Jill, was it gastroenteritis (sometimes referred to as norovirus) that your GI said could have set off this supposed infectious IBS? That was what I was told when I initially became ill - I got so sick so suddenly that everybody (myself and the doctors) thought it was either food poisoning or a virus, and the urgent care doc who administered IV fluids to me said it was probably viral gastroenteritis, and that I should feel better in about a week. That was just over 2 years ago and I never quite recovered. I have read that viruses or bacteria are thought to trigger IBD in some people - the immune system turns on to fight the infection but can't quite turn itself off again and attacks the digestive tract when there's no virus left to fight. When you first became ill, was it sudden? If so then I could see it going either way - post-infectious IBS or some form of IBD, it sounds like either one can be triggered by a virus/bacteria.

Don't you love how doctors have an excuse for everything? Your blood is from "straining"??? Wow, that's a new one. Is it bright red blood or dark/black? I have bright red blood every so often on the TP but that seems to be coming from my recurrent fissures - I've never had blood in the toilet. I'm guessing the scope ruled out internal hemorrhoids, fissures, etc that could be causing the bleeding?

I hope the emotional stuff gets easier to deal with as this all sinks in more and you decide how you want to proceed. In the meantime, we're here for you if you need to vent or a (virtual) shoulder to cry on. Thinking of you and sending lots of (virtual) hugs your way!

 

[tiloah]

I'm so sorry you are being toyed with like this. I really hope your doctor is right though and you don't have Crohn's! I hope you don't mind that I would prefer to see you kicked out of our club for good.

I hope whatever it is though you get something definitive soon and some peace of mind.

 

[Gwen pippy]

Hi Jill
wow what a lot to take in, it must be very frustrating to be faced this information but equally it would be amazing if you are IBD clear and Rifaximin will knock those issue's to touch. You are a strong girl and I know that you can handle anything that comes your way, go with the flow, just one thing though, stay in touch with us.
Anything is possible in life, why not this.
Sending you big hugs and I will be praying for a good outcome.
Gwen xxx

 

[Tesscorm]

Jill,

You may find this article to be of interest - Postinfectious Irritable Bowel Syndrome


http://cid.oxfordjournals.org/content/46/4/594.full


Good luck! I hope all turns out well - no worsening of symptoms and no Crohns!!! :rosette1:

 

[Mayflower537]

@May - Oh, I hope I see an improvement with Rifamaxin like you! How soon did you see a change? What are your symptoms? I must admit, I haven't visited the Undiagnosed club much (up until today, I thought I was diagnosed!). I'll have to read up on my fellow members.

And you are right, IBS doesn't cause damage to the colon. However, each scope since my first in July 2010 have been normal. Only "red areas" that could be possibly be "mild inflammation" has been seen in my rectum in recent scopes, which my GI says can be caused by irritation with IBS. So, being that only my first initial scope showed true inflammation, my GI is sticking to the fact I had an infection at that time. Which, I might add, I just learned today thru our phone convo my initial biopsies did say "possible infection".

The first round stopped what could have possibly been a "flare" in its tracks. I am always hesitant to use that word, as I was never convinced I had undxed IBD. But maybe IBS flares as well. Anyway, I was doing poorly at the time, actually and was having problems every single morning (which was unusual for me), and by about the 3rd or 4th day, the d and cramping stopped. I was pretty good for a couple of months, and then started having scattered issues by the end of the year. So he put me on it again in January. It was not so dramatic that time, so I thought it wasn't going to work. It was only with the passage of time that I realized that I had had so few problems. In May, I had an episode of cramping and d, and I thought my problems were back. But it was really the only acute attack I've had, and it didn't last as long as they used to.

Symptoms-wise, I would have these acute attacks of D and cramping and sometimes vomiting that would last for hours. These would happen very sporadically, so I was not in pain every single day, and also it was very hard to find the trigger. I always assumed it was the last thing I had eaten, b/c they would typically occur after a meal. I do remember frequently having loose bowels minus the horrid cramps, that but it never occurred to me that it might be all connected. Anyway, so on the symptom spectrum, I am pretty mild, even compared to people with IBS. My GI's thought was that perhaps my symptoms were the result of SIBO, which is why he put me on the Xifaxan. I never had this confirmed with any kind of breath test or anything.

If you have any more questions, please ask. I am sorry you are going through this. I wouldn't want to have to find out one day AGAIN that I did have a chronic disease after all. That would be mentally very difficult.

 

[xJillx]

@Cat - I wouldn't say it was exactly sudden. I mean, I never had any GI problems in my whole life (I could eat and drink whatever I wanted w/o issue), but I started noticing mucus with and seperate from a BM around May 2010. But that was the only symptom - no pain, normal BM once a day. I dismissed the mucus, because I was on a health kick eating lots of fiber. So, I assumed I was just getting too much fiber and cut down. But then I had that 48 hr period in July 2010 where I was in and out of the bathroom with very loose stools, lots of mucus with some blood, and flu-like symptoms. So, at that point I went to see a GI and had a colonoscopy the following week. So, I guess it all developed in 3 or so months. Can that be considered sudden?

Yes, my GI does have an answer for everything. But, to be honest, the blood is minimal. It's bright red, and only a dot or straind among the mucus. It isn't loose in the toilet bowel or anything.

I really appreciate all of your kind words and advice, Cat. Thank you.


@Nic - I love this forum, but I would be happy if I needed the boot. But, again, I am not getting my hopes up too soon. Thank you for the support!


@Gwen - It is frustrating and confusing. I just don't know what to think! Thank you for your confidence; I hope I can handle this.

 

[xJillx]

@Tess - I am going to read this thoroughly at home tonight. Thank you for posting this.


@May - Thank you for sharing your story. I certainly hope you don't have IBD. How have you been lately?


Can I just thank all of you for being so helpful and supportive. It's been an overwhelming day (I've gotten hardly any work done here at the office - shhhh!), but you guys have been terrific. Thank you, thank you.

 

[Mayflower537]

Pretty well lately, thanks for asking. Mainly any issues I have are typically linked to cyclic female issues which have worsened since I got off bcp last year. In fact, for a while, I thought endo might be some of my problem, and if the Xifaxan hadn't helped so much, I'd have definitely pursued that harder.

 

[Cat-a-Tonic]

Jill, the onset of my "viral gastroenteritis" (if it was indeed gastroenteritis that started it all for me) was REALLY sudden. Literally one minute I was fine and the next I was dizzy, felt horrible, nauseous, and having "pee out my butt" type diarrhea. I remember it clearly, it was a Friday afternoon and it was almost time for my lunch break, and I was going to go out and pick lunch up from somewhere, and I was pondering my food choices. I was hungry and felt fine and normal - then out of nowhere I was hit with waves of nausea and felt really ill. It hit me in the blink of an eye!

So to answer your question, it doesn't sound to me like you had a sudden onset of illness, definitely not the way I did! I skimmed through the link that Tesscorm posted, and that also makes it sound like the onset would be pretty sudden.

 

[Jessi]

Wow, Jill. Good luck with the Rifaximin. I really hope it works for you. It would be such a miracle if your GI was right. Crossing my fingers for you. :hug:

 

[xJillx]

@Cat - Wow! Your case did come on very suddenly. I read through Tesscorm's link, too, and I don't really think my symptoms line up with postinfectious IBS. If this is what I have, I'll be very surprised.

However, I have often wondered why I haven't gone into remission. If my case is so mild that it is even questionable I have Crohn's, why haven't I responded well to Lialda and cortisone enemas? Those who have used cortisone enemas say they work well and quickly. But I haven't improved at all with when using them.


@Jessi - I agree, it will be a true miracle if my GI is right...

 

[KaLa]

Hi, Jill. I have ulcerative colitis and my colonoscopy biopsies have always come up normal, with slight inflammation. I usually have pretty long periods of remission and then a really bad flare with lots of D and blood. I don't usually have mucous. I would really stay on top of it, because before I was diagnosed (15-20 yrs ago now) they kept sending me away because I only had a little blood like you're describing and it didn't even show up on the stool samples they took. I hope that it really isn't crohn's or UC and that the antibiotics take care of it. Please keep us updated!

 

[SunshineSmile]

So sorry to hear this, I know it is so frustrating! I showed normal EVERYTHING until I did a pill cam and it showed deep ulcerations in my small intestine and inflammation. It's so hard to trust doctors nowadays. Just try to hang in there, and please don't hesitate to write on the undiagnosed club! We are all very supportive and would love to help you feel a little better about the situation by being there for you any way we can!

 

[Astra]

Hiya Jill

My God! What a shock! Your head must be cabbaged!
I really feel for you, to be in limbo is so frustrating.
I also hope it's not an IBD too, but I would still be a little suss about it! And I'd defo get a second opinion, just to put you out of your misery.
Take care Jill and let us know how you are from time to time
xxx

 

[dannysmom]

Hi Jill. (I am just reading your post here now.) How frustrating! Isn't it possible that the lialda helped clear the ulcers and inflammation in your large intestine which is why the second scope were normal? And you just need something extra for the continuing symptoms. I do hope you feel better ... but if not, then I guess you know you can go back on the lialda quickly (I hope).

 

[xJillx]

Isn't it possible that the lialda helped clear the ulcers and inflammation in your large intestine which is why the second scope were normal?

I thought and suggested the same thing! But, my GI says that treatment wouldn't affect biopsy results. If I had Crohn's and was on treatment, biospies would still be positive. HOWEVER, many of our members say they have negative biopsy results.

As you said, I guess I just have to wait and see how this goes...

 

[shazz]

Hi Jill,

Thought I would add my bit. I was on lots of different meds and stuff to control what 3 different gi's thought was IBS, all in my head and uc/crohns. I had scopes and stuff and they showed up as slight inflamation but the biopsies came back as normal.
It wasnt until my latest gi stopped all my meds for 6 weeks and then did a flexi did the extent of my uc become apparant. They now think I have crohns as well!

I am hoping and have got everything crossed for you that you dont have IBD in any way shape or form.

Keep us updated.

Sharon xxxxx

 

[xJillx]

Thanks, Sharon. Though my GI sounds confident I don't have IBD, I think her plan to stop the meds is to basically see what happens. Like you said, perhaps once I stop the meds, I'll get a firm diagnosis. And that's why I have agreed to it. If this is what it takes for me to get answers, so be it.

Of course, I would be thrilled not to have IBD, but I think this is unlikely. My symptoms align more with Crohn's than IBS. But I guess only time will tell.

 

[shazz]

Still got fingers crossed for you.

Sharon xxxxx