I've got IBS

[Agent X20]

Been having a bit of a flare for the last six weeks and had a scheduled visit to see my consultant yesterday. That was probably a good thing, but I was a bit nervous as I didn't want to end up taking any more drugs or having to have any invasive tests done

It wasn't my usual consultant, which increased the stress factor even more, but this guy was really quite smart and was asking me all the right questions before I even had time to volunteer the information. He sat back in his chair, looking increasingly smug and then informed me that what I had experienced for the last six weeks wasn't crohns at all, it was most likely IBS

The blood tests backed this up. While the physical symptoms I've had weren't much fun, and I wouldn't wish IBS on anyone, it's done my head a lot of good and I sort of feel better already. I've also got some anti-spasmodics... so while I've still ended up with more drugs, I don't mind so much... so I'll have to see how this works out

I presume the IBS can be triggered by the crohns (???) and the confusing bit is that it started in the same area where I have internal fistulas. The doc says I need to be careful in what I eat (I'm way ahead of him on that one) and I need to avoid stress... any pointers on that will be gratefully received!

Anyone else had anything similar?

 

[Wiles]

I have IBS alongside Crohn's as well. The doctor who diagnosed me said that it isn't uncommon for people who have Crohn's. I don't really have a lot of pointers, as even though I'm in remission with Crohn's I still have a fair bit of diarrhea from the IBS. The two big things that set it off for me are food and stress.

I do remember one bit of advice though, a doctor once told me that with IBS I shouldn't go for long periods of time without eating and that it was better to eat smaller portions more often.

 

[Peaches]

My GI told me years ago I "probably" have IBS as well as Crohn's. Honestly - I have no clue what to do with that Steve. Since we aren't supposed to do a lot of fiber with the CD - I guess exercise is the biggest help. Since Kimberlie mentioned that - I do recognize that there seems to be a direct correlation between when I exercise or at least walk every single day and how good my gut feels. It seems to make me more "regular" and less likely to have D than when I don't do it. Hmmmmm. Good luck, and if you figure anything out in your travels, let us know - I'd be interested in hearing it.

 

[Guestly]

Hey Steve,

Me too. The GI told me that the Crohn's has basically thrown my bowels into confusion so they cramp up at all sorts of stupid times.

My difficulty is that the symptoms are very difficult to distinguish from each other so knowing whether you are in crohn's flare, having an attack of IBS, ate something dodgy or have stomach flu is impossible!

Also they recommend immodium for IBS... may work for you, but it made a complete mess of me, and I understand it's not generally recommended for Crohnies...

I kinda go through a check list...

1) Have I eaten anything different?
2) Is anyone else in the house sick?
3) Hot flushes?
4) How long is it lasting? I find the IBS hits in shorter bursts while the Crohn's hangs around like a bad smell (pardon the pun).

Nonetheless its a tricky one isn't it?

Hopefully some people will have some answers for all of us.

Good luck and I hope you will be feeling much improved soon.

 

[Sue-2009]

How tricky is that to have both. I hope the exercising works...I thinks its a bad word. But, you might want to give it a try...BTW Lishyloo...I just read you by line---LOVE IT!!! Sue

 

[pewpewlasers]

I was diagnosed with IBS and I have always thought that it's a load of crap. They don't know what it is, just that your guts are dysfunctional. I take antispasmodics too but they don't help all the time. Mine isn't triggered by stress and I need to keep reminding my doctor of that.
I eat and my bowels cramp up and inbetween cramping I have to rush to the bathroom. There is no way I can possibly move when they cramp up. It literally drops me to my knees and I can't move.
It is a tricky tricky thing.

 

[Cookie]

I am a little confused about the whole IBS thing. Years ago (about 23 years ago, my Crohn's diagnosis came 16 years later) I was told that I had IBS after experiencing symptoms similar to those which are typically characterized as IBS. However, I was told that the diagnosis of IBS is exclusionary, meaning that the diagnosis of IBS is given when symptoms exist, but other causes (such as IBD, parasitic infection, etc) have been excluded. So if that is the case, then how can a doctor say that your symptoms are from IBS and not IBD? Is there an actual test that CONFIRMS IBS? Or is it just that you are having symptoms without evidence of active Crohn's?

The main reason I ask this question is that I often wonder, when in a flare, if my Crohn's is active, or if it may be IBS. I get "flares" sometimes that are not quite like what I was experiencing during my initial diagnosis. More along the lines of bloating, cramping, diarhea, but no blood and less frequency. I know these can be Crohn's symptoms or IBS. I definitely think it is possible to have both, but how do you know?

 

[Nic]

Before I was diagnosed with Crohn's, I was told I had IBS, so for 8 yrs that's what I thought I had. I took the antispasmadics and after I ran out I never got any more. I got some stuff from an herbal store called Stress J, made by Nature's Sunshine, and every time I felt stressed and was having D I would take a few and it always helped.

Also, this isn't for everyone but my stepmom is really into homeopathic stuff and every time I had D and cramping while visiting them, she would give me 3 little homeopathic beads to dissolve in my mouth and it would all go away. I'm not sure what they were called, all her stuff is in German! But if you decided to look into that I could ask her. I've been tempted to go back to doing that, because ever since they diagnosed me with Crohn's and put me on different meds I've been sicker than I ever was in the 8 yrs of not knowing I had it!!

Good luck and I hope you get feeling better!

 

[pewpewlasers]

I am a little confused about the whole IBS thing. Years ago (about 23 years ago, my Crohn's diagnosis came 16 years later) I was told that I had IBS after experiencing symptoms similar to those which are typically characterized as IBS. However, I was told that the diagnosis of IBS is exclusionary, meaning that the diagnosis of IBS is given when symptoms exist, but other causes (such as IBD, parasitic infection, etc) have been excluded. So if that is the case, then how can a doctor say that your symptoms are from IBS and not IBD? Is there an actual test that CONFIRMS IBS? Or is it just that you are having symptoms without evidence of active Crohn's?

The main reason I ask this question is that I often wonder, when in a flare, if my Crohn's is active, or if it may be IBS. I get "flares" sometimes that are not quite like what I was experiencing during my initial diagnosis. More along the lines of bloating, cramping, diarhea, but no blood and less frequency. I know these can be Crohn's symptoms or IBS. I definitely think it is possible to have both, but how do you know?

I think there is a very fine line that a lot of doctors don't see. I've been diagnosed with IBS but yet when I was admitted to the hospital and had an xray done, the xray showed dilation which from what I understand is not related to IBS.

There are no tests that can confirm IBS. It's usually just based on the doctor's judgement. Doctors don't fully understand what causes IBS. What they think is that the gut doesn't function properly or is very sensitive. Usually IBS is diagnosed in the absence of other diseases. From my understanding, no link has been established between IBS and Crohn’s disease or ulcerative colitis. I've also read that it's not related to Crohn's, but who knows? It may be that you are just having symptoms without signs of your Crohn's being active.

 

[Nic]

I think there is a very fine line that a lot of doctors don't see. I've been diagnosed with IBS but yet when I was admitted to the hospital and had an xray done, the xray showed dilation which from what I understand is not related to IBS.

There are no tests that can confirm IBS. It's usually just based on the doctor's judgement. Doctors don't fully understand what causes IBS. What they think is that the gut doesn't function properly or is very sensitive. Usually IBS is diagnosed in the absence of other diseases. From my understanding, no link has been established between IBS and Crohn’s disease or ulcerative colitis. I've also read that it's not related to Crohn's, but who knows? It may be that you are just having symptoms without signs of your Crohn's being active.

When I was diagnosed with IBS, it was from a stool sample and I had no other tests run to find out if I had an IBD. Of course they were military doc's and most of the time they just get you in and out of their hair as quick as possible. If it weren't fo my hubby and I both putting our feet down this time around, I'd prolly still not know that I have Crohn's, seeing's to how the military ER said they had no idea and that they were just gonna treat me for Vertigo!!!

 

[pewpewlasers]

I've never had a stool sample. They asked for one during one trip to the ER but my bowels got nervous and didn't want to. Even before I went, I couldn't even control them!
You really have to put your foot down and I'm glad that you did. I'm still fighting to see if I really have Crohn's. Everytime I have been to the hospital they tell me I most likely have Crohn's, but then I see my gastro and he says, "Take a day off and go hang out at a friend's house or something. You're just stressed." Hah! Sorry, but no, I am not stressed. Even after I was admitted to the hospital recently and I went to see him after, I could still barely walk because movement made my intestines scream in agony, he prescribed me antideppressants. Luckily I am going to start seeing a new gastro doc.

I just want to punch all these stupid doctors in the face.

A lot of people with Crohn's were first diagnosed with IBS.
Gastrointestinal disorders seem really hard for doctor's to grasp.

 

[Nic]

Wow your gastro definitely seems a little out there! Glad to hear your getting a new one! Good luck and let us know how the new one goes! The one I have now, seems to over do it sometimes, which I guess can be a good thing, but drives me nuts sometimes!!

 

[pewpewlasers]

Better to overdo it than ignore it!

 

[Agent X20]

Thanks for all the replies, everyone. So much information to go at here... hope I don't miss anything out.

The IBS diagnosis was arrived at by excluding crohns... courtesy of a recent blood test, and the doc seemed to think the symptoms fitted IBS. Obviously the problem now is, when I get symptoms, is it IBS or crohns? As long as I feel better without having to take too many horrible drugs I'll be happy with that. Still getting some cramping although I've only taken anti-spadmodics for a couple of days. The idea of giving a stool sample makes me laugh, which particular sample would they like? It can vary from a liquid to being set like concrete... all within the space of 24 hours

Food - I'll just have to experiment with that one, I already watch what I eat, with the emphasis more on soft and squashy rather than hard and crunchy... eating more fibre could be a bit of a problem. I do tend to eat little and often, though

Stress - I'm quitting work at the end of September. Will I achieve bowel nirvana? I don't know, but work is very stressful, and the prospect of quitting (I'm actually being made redundant) hasn't lessened the stress at the moment

Exercise - I'm going to use my car more. Been going to work on the train, which involves a walk of about 50 yards at each end. When I go back to work I'll go back to driving and parking at the bottom end of town... involves a half mile walk each way and a bloody great steep hill! In September I'm going to sign up at the local sports centre and get going on some cardiovascular exercise. I think exercise makes up for a multitude of sins... but I've got restricted mobility and due to recent crohns/IBS and the weather, and being off work for a number of weeks, I've hardly been out at all

Cheers, everyone

 

[soupdragon69]

Hey Steve,

I was diagnosed with IBS summer 07. Was admitted with a crohns flare yet still was running to the loo multiple times a day with gut pain etc after having been on iv antibiotics and steroids for 2.5wks.

The CT showed inflammation around my terminal ileum where my crohns was at that time when I was admitted. My bloods were deranged also on admission.

After the 2.5wks they did a nuclear scan to see if there was ongoing inflammation AND a colonoscopy. The scan showed nothing and the colonoscopy came back clear also. I was in absolute agony during it and the pain was so severe I couldnt speak. They said it was gut spasm due to IBS.

Have you ever heard of "The Gut Trust"? They were called something else but renamed. I saw a leaflet in my previous GP surgery for them and had a quick look online. Think you have to have membership to "access all areas" and info from them but they focus on IBS.

Might be worth having a look...

I agree with Lishyloo about the mental checklist. At the mo I am having clammy sweats, changes in temp, etc so know its my crohns.

Also I find that a crohns flare does trigger my IBS hence the above too..

Let us know how you get on my friend. Hope you are doing ok. On the aspect of redundancy I think it will take some time to readjust and I guess its allowing that time. Its the "letting go" too isnt it and what you are "falling into"? Does that make sense? Sort of creates its own stress and is fear of the unknown long term..

Thinking of you. ((hugs))

 

[Astra]

After being told for 15 years that I had IBS, I'm sat on the fence with this one, cos when I was finally diagnosed in 2005 after a scope, they found the Crohns straight away. then my gastro told me that IBS doesnt exist and that theres always an underlying reason for cramps D&V etc and should be investigated asap. That it's usually lazy GPs who diagnose IBS (these are his opinions, not mine)
I just wished I'd have screamed for a referral to gastro years ago!
So, I still don't know whether IBS exists or not, how can you tell the difference anyway? so similar, yet so different?!

 

[pewpewlasers]

After being told for 15 years that I had IBS, I'm sat on the fence with this one, cos when I was finally diagnosed in 2005 after a scope, they found the Crohns straight away. then my gastro told me that IBS doesnt exist and that theres always an underlying reason for cramps D&V etc and should be investigated asap. That it's usually lazy GPs who diagnose IBS (these are his opinions, not mine)
I just wished I'd have screamed for a referral to gastro years ago!
So, I still don't know whether IBS exists or not, how can you tell the difference anyway? so similar, yet so different?!

I agree with you. I think IBS is a pretty BS diagnosis.

 

[Agent X20]

Hmmm... don't know what to think about IBS anymore! The weird thing is that it all started in the usual crohns area six weeks ago (RLQ). The GP told me to increase the Asacol tablets... maybe that sorted the crohns problem and the IBS took over from there...

Jan... I'll have a look for the Gut Trust... it's a snappy name! I've been off work for 6 weeks now... and it feels like my brain has already given up... think I've wiped all the work-related knowledge I ever had to make space for other stuff.
Feels like I've been sidelined big-style, but I suppose the periods I've had off sick haven't helped there. Got two foreign holidays planned between now and September, plus enough holiday left to work three days a week for my last 10 weeks or so. Looking forward to a stress-free existence, I think... although I believe it's in my nature to find stress wherever it exists

 

[Agent X20]

I don't know how I feel about all of the opinions. I am hoping my diagnosis stays IBS.

My best friend has IBS and we often swap "amusing" bowel related stories. I think if you're not diagnosed with crohns and have all these hideous symptoms then the IBS is real enough. The problem with the dual diagnosis is that you don't know where one disease finishes and the other one starts... that's just my opinion, and I've only had to think about it for a couple of days

I wouldn't make light of anyone with IBS... it can be really nasty. My friend spends a lot of time on an IBS support forum... very much like this one in fact. If I could make a wish I'd cure ALL diseases and syndromes