Dude, your IBS is not like my crohns!

[nogutsnoglory]

I'm so sick of people comparing their IBS to crohns. Can we petition to change the damn acronym IBS so it stops getting mixed up with IBD! I know IBS isn't fun and it's awful and maybe a precursor to other prob but it doesn't come close to IBD and it can't be compared to IBD because even for the similarities the mechanism behind what's wrong is totally different.

 

[valleysangel92]

I totally here you on this. I have had major arguments with people before because they told me they knew how I felt since they have ibs. Ha. I asked them when they last had to take a med that could damage their liver or increase their risk of cancer. They shut up.


Sorry you've had to deal with such ignorance. I agree that it's not a fun illness, but if I had to choose between that and crohns, ibs would win hands down.

Take a deep breath and remember anyone worth your time will realise the difference. Anyone who doesn't or doesn't at least make an effort to learn more is just plain ignorant and sadly, just like crohns, there's no cure for that little gem..

 

[nogutsnoglory]

Some really good and well intentioned people who know all my surgeries, ostomy, meds etc still seem to feel justified in comparing it to IBS. It's like comparing the flu to hiv. Yes, they are both viruses and no they aren't the same lol.

 

[If*]

I totally feel so sorry for people who get the two confused, they are straight up idiots.

Be THANKFUL Stupidity is not contagious

 

[juggys69]

I'm so sick of people comparing their IBS to crohns. Can we petition to change the damn acronym IBS so it stops getting mixed up with IBD! I know IBS isn't fun and it's awful and maybe a precursor to other prob but it doesn't come close to IBD and it can't be compared to IBD because even for the similarities the mechanism behind what's wrong is totally different.

I take it in this case the person didn't have a severe case ? I agree with you somewhat, but the education has to go both ways. Severe cases of IBS are also no joke. As part of those with "Unknown Stomach" issues, my primary has said she is 99% sure that I have crohns or severe IBS. If it turns out to be IBS, I can assure you, its no joke, and I do know quite a bit of what you are going through. This is me:

Constant fatigue, constant bloating. More or less constant pain, with some areas that are "sharp" pain. "Constipated" diarrhea, that statement is an oxymoron granted, yet its the only way to describe it. Its never hard, but I do get "constipated". Near constant nausea. Zero appetite ( as a matter of fact I am over 76 hours without having eaten a meal atm). when its not quite at its peak of severity I get a "wet" feeling inside, from my navel region down, more towards the surface it feels like.

Now does any of that sound familiar ? I leave out stuff that I think could be cross related with my chronic prostatitis as well, making a chart and a list for my Urologist and GI atm, was actually going to post it here and see what others thought it was, may still in more depth, but my point is, if later down the road they tell me its severe IBS, I do actually know your pain, and in fact have been on some of the same meds that my primary could get me.

If it comes back as severe IBS, I don't want what I am going through made little of either, I share your pain. I do actually think its crohns though, as does my old primary. I'd just tell your friend that while they may know a little bit of what you are going through, they only know a tiny fragment of it, and for that they should feel lucky.

Also, I do not, nor ever will get into the mental aspect of it, which we all know and live with.

 

[Muppetgirl]

I can understand you guys wanting to change the acronym. I work in a health related field, and I am ashamed to say I once heard a colleague who was reading through notes say what is IBD? Bad enough they had to ask but worse still the response they got from another colleague - I think you can guess whats coming - was 'oh it stands for irritable bowel disease' :eek2:. The only thing that was irritable was my interuption to explain what it really meant, both the letters and the reality for folks who have it. If professionals can mix them up, what hope is there for everyone else...

With endometriosis people say 'oh I understand, my periods are really painful too'. Really? And can you recall a time when your internal organs were destroyed by them?? :ybatty:

 

[Farmwife]

Well Im sorry for people with IBS but I have yet to hear any parent pray that their IBS kid will be able to keep their colon through high school.

 

[nogutsnoglory]

Ugh I can't stand when I see the term irritable bowel disease, that's when they often just combine IBD and IBS as one of the same. Too often on medical sites too.

I don't diminish severe IBS but IBS doesn't deal with severe toxic heavy duty meds, surgeries, rectal bleeding, extra intestinal manifestations, and the fun worry of obstructions. We deal with the pain and bowel movement prob of IBS but our real worry is the destruction the disease is causing the body.

 

[If*]

So sorry, although ibs may be severe 'feeling' it should not destroy the digestive tract, so while very uncomfortable it is not said to be destructive. They are not even close.
The unspoken rule, 3 days with out food or nutrition can result in increased lack of appetite, basically the less you eat the less you eat. A harsh thing to do to your body. Does your Dr. know?

I do not think anyone here would 'make little' of someones suffering. People with ibs will rarely face resections, fistulas, stomas, tube feeding or tpn, ruptures, bleeding, malapsorption, short bowel syndrome, strictures, biologic medications, steroids, immunesuppresants, i.v therapy, and more....... It is really so not the same, i just don't want someone to 'make little' of IBD either ~ Education is important to stop the confusion

 

[juggys69]

So sorry, although ibs may be severe 'feeling' it should not destroy the digestive tract, so while very uncomfortable it is not said to be destructive. They are not even close.
The unspoken rule, 3 days with out food or nutrition can result in increased lack of appetite, basically the less you eat the less you eat. A harsh thing to do to your body. Does your Dr. know?

I do not think anyone here would 'make little' of someones suffering. People with ibs will rarely face resections, fistulas, stomas, tube feeding or tpn, ruptures, bleeding, malapsorption, short bowel syndrome, strictures, biologic medications, steroids, immunesuppresants, i.v therapy, and more....... It is really so not the same, i just don't want someone to 'make little' of IBD either ~ Education is important to stop the confusion

If you're talking to me about the eating thing, this isn't because I have an eating disorder, I was a Chef, I love food. Eating just makes me feel sick, never mind that I have no appetite or that I have constant nausea. Before all this "started" I ate well actually and any cook or Chef also "picks" here and there all day when working on top of that. My friends and family used to be amazed at the amount I could eat, and gain absolutely no weight. Oddly enough, even though for years now I generally eat only a meal a day now ( with some days skipped obviously ) besides my initial weight lose years ago from a stomach virus ( even before this, years and years ago ) my weight does not go down. I weigh 130, am a 5' 11" male, yes, thats skinny, but when this all started seven years ago, I weighed 135-140. Before I got giardia as a teen, I was 165, I just never regained the weight, no matter what I ate.

And yes, my old primary did know. We had a discussion about it, turns out I get a lot of my daily calories needed from soda. Obviously not healthy, but I'm not going to keel over and die either.

 

[If*]

I had an acquaintance who had Giardia, it did change how she could eat and it did leave lingering effects of low weight due to the destruction it did to her intestines. I don't know if this will help you at all, but she eats lots of yogurt, and says it sits well. She said she had bouts of 'D' still after years later.
Have you ever looked into probiotics, ask your Dr. if they might help
Can you have liquid nutrition? I just was reading about a newer Protein drink from Organic Valley, it looks pretty good. Sometimes when you skip, miss meals nutrition it can eat muscle. You have to feed your body. It fights better when nourished.

I only drink reverse osmosis water - giardia is not saposed to be able to live in it

Hope you are doing better today.

 

[juggys69]

I had that when I was 19, I dropped like 25 pounds, I just never regained the weight, I haven't had it since then. I was just showing how my weight has remained stable, even with my shift in eating habits in the past five years, I'm going to be 45, the Giardia had nothing to do with my shift in eating habits.

Whatever gave me that back then, also gave it to my ex wife and son, the doctor assumed it was from what you do as well, some contaminated water source. We thought maybe my grandparents well water, but that made no sense as no one else in my family was effected.

 

[nogutsnoglory]

Your entire perspective changes with a chronic illness like crohns. I have had shingles and yea it sucked but it's nothing next to crohns, you see the shingles commercial it sounds like the worst thing on earth.

 

[juggys69]

Your entire perspective changes with a chronic illness like crohns. I have had shingles and yea it sucked but it's nothing next to crohns, you see the shingles commercial it sounds like the worst thing on earth.

I've already said the Crohns commercials do no good for awareness.

 

[Khaley]

I'm seriously considering making a graphic of my resection scar and putting it on a t-shirt with the words "Ask me about my zipper scar" to raise awareness of IBD. I want people to understand what this disease is and I want it to get some serious attention before I (or any of us) have to lose more insides. It could have the URL for CCFA on the back and be part of a fundraiser campaign.

 

[If*]

Not a bad idea Khaley. I get some odd glances in a bikini top, 7 or 8 scars looks like I fell on a rake and fought with a shovel who was holding a staple gun. No one ever ask, they just quickly look, lol.

It is definitely not running through a field, or cruising a mall for a bathroom. It might need to be more graphic and then possibly it would be taken serious.

 

[UnXmas]

I used to think people with IBS deserved more sympathy, because they have a disease just as embarrassing as IBD, yet doctors aren't at all concerned about them and may also treat them like the IBS is their fault for not managing stress properly (I know how horrible it is to be treated like this, because I was misdiagnosed with IBS).

But when I'm in hospital for weeks, when I'm terrified I'm going to die, when doctors are telling me I might not survive this surgery (I was told this before my surgery a couple of weeks ago), then I wish for a disease that's only embarrassing and inconvenient.

 

[nogutsnoglory]

I agree unxmas, IBS sucks but I'll trade for that ANY DAY!

 

[javanov]

There's no particular proof that IBS "doesn't" lead to "damage".

Of course it's not comparable to IBD in any way, no one should even suggest that.

But as we know, it could of course lead to things such as fistulas, fissures, hemorrhoids, prolapse and possibly, if someone was unable to clear their bowels frequently enough, intestinal blockages.

 

[nogutsnoglory]

Javanov, IBS does not cause any internal damage that's why it's labeled IBS. It's a collection of symptoms the patient experiences without any diagnostic evidence that anything is wrong. If they were to have fistulas etc it would be a sign that they were misdiagnosed and have IBD.

You are correct though that at the anus someone who was constantly having diarrhea or constipation could have physical evidence of a problem with IBS but there wouldn't be any internal damage.

 

[javanov]

Javanov, IBS does not cause any internal damage that's why it's labeled IBS. It's a collection of symptoms the patient experiences without any diagnostic evidence that anything is wrong. If they were to have fistulas etc it would be a sign that they were misdiagnosed and have IBD.

I get what you are saying. As you say fistulas are nearly always a sign of IBD, but it's still possible to develop abscesses or fistulas without IBD, although un common of course.

You are correct though that at the anus someone who was constantly having diarrhea or constipation could have physical evidence of a problem with IBS but there wouldn't be any internal damage.

Constant constipation or diarrhea can cause great harm to anyone, that's in no way exclusive to IBS sufferers of course but then what is?

 

[DougUte]

I think an IBS diagnosis should always be subject to a second opinion. I was misdiagnosed with IBS. Docs just call it IBS if they have no clue what it is.

 

[juggys69]

I think an IBS diagnosis should always be subject to a second opinion. I was misdiagnosed with IBS. Docs just call it IBS if they have no clue what it is.

This. Or they used to like to use the gastronics label as well.

What people aren't getting here, is quite a few people with IBD's are first told its IBS, or probably IBS. As the above person said, its pretty much a generic label doctors use instead of just admitting they have no clue whats wrong with you yet.

 

[Hope345]

I have a daughter with IBD and one with IBS, they are both sick most of the time. As a mother it is hard to see both of their lives so troubled with GI issues.

My heart goes out to both of them. However my daughter with IBD is suffering so much. she said if someone went to the bathroom once of her 20 times a day, they would want to be in the hospital with such pain. She never stops bleeding, their is no cure at this time.

My daughter with IBS has stomach issues 24/7 as well. She had to quit college, quit her job and can not seem to find a place of moving on with her life because of all the GI issues.

My daughter with IBD (age 15) has come to realize than no one can really understand what she is going through unless they have it themselves. My heart goes out to her and all of you. I am so sorry that this disease takes so much.

 

[juggys69]

I have a daughter with IBD and one with IBS, they are both sick most of the time. As a mother it is hard to see both of their lives so troubled with GI issues.

My heart goes out to both of them. However my daughter with IBD is suffering so much. she said if someone went to the bathroom once of her 20 times a day, they would want to be in the hospital with such pain. She never stops bleeding, their is no cure at this time.

My daughter with IBS has stomach issues 24/7 as well. She had to quit college, quit her job and can not seem to find a place of moving on with her life because of all the GI issues.

My daughter with IBD (age 15) has come to realize than no one can really understand what she is going through unless they have it themselves. My heart goes out to her and all of you. I am so sorry that this disease takes so much.

Exactly, and just as it says in your sig, the daughter with IBS is actually undiagnosed. The thing that people in this thread aren't getting is that if a person has a chronic problem and its labeled as severe IBS, thats really just the doctors way of saying we have no idea whats wrong with you, but we don't want to say that so lets label it anyways.

People that have the IBS label shouldn't be made light of either. Thats my label atm actually, "either severe IBS or Crohns."

I wish my problem was just worrying about an accident now and again, people don't seem to understand the IBS label doesn't just mean that, it could be just as severe as what they are going through, as like I've said there are plenty right here on these boards that first had that label as well, and latter it was finally diagnosed as an IBD.

IBS and Gastronics are just labels doctors like to use when they have absolutely no idea whats wrong with you atm, just so they look smart and don't have to say those words, "I don't know.".

 

[UnXmas]

Exactly, and just as it says in your sig, the daughter with IBS is actually undiagnosed. The thing that people in this thread aren't getting is that if a person has a chronic problem and its labeled as severe IBS, thats really just the doctors way of saying we have no idea whats wrong with you, but we don't want to say that so lets label it anyways.

People that have the IBS label shouldn't be made light of either. Thats my label atm actually, "either severe IBS or Crohns."

I wish my problem was just worrying about an accident now and again, people don't seem to understand the IBS label doesn't just mean that, it could be just as severe as what they are going through, as like I've said there are plenty right here on these boards that first had that label as well, and latter it was finally diagnosed as an IBD.

IBS and Gastronics are just labels doctors like to use when they have absolutely no idea whats wrong with you atm, just so they look smart and don't have to say those words, "I don't know.".

I agree with you that IBS may just as well be called "undiagnosed", and that many of its symptoms can be just as horrible, but I still think what I posted above is true: no one dies from or has surgery for IBS, and it would be very unlikely for someone to spend weeks in hospital due to IBS. By definition, IBS cannot cause that kind of harm. If someone with an IBS diagnosis later needs surgery, that IBS diagnosis has to be disregarded.

 

[juggys69]

I agree with you that IBS may just as well be called "undiagnosed", and that many of its symptoms can be just as horrible, but I still think what I posted above is true: no one dies from or has surgery for IBS, and it would be very unlikely for someone to spend weeks in hospital due to IBS. By definition, IBS cannot cause that kind of harm. If someone with an IBS diagnosis later needs surgery, that IBS diagnosis has to be disregarded.

I actually had an uncle that died from what they had termed back then as IBS. He had gone to the hospital in pain and such many times and it was always labeled IBS, the last time he didn't go until he had collapsed and my grandmother found him.

So exactly what I said, IBS pretty much means undiagnosed. Even now IBD awareness is fairly new, 20 years ago it was almost nonexistent. Like I said, atm I am in the severe IBS label group as I didn't have the coverage needed to see specialists, which now I finely do, so maybe I can finally get it accurately labeled. I listed most of my symptoms above, like I said, does that sound like IBS ? Thats still the tag I have until diagnosed though, same as many on these forums also had to.

So do we make light of all those people and then later send them an apology card when they are actually accurately diagnosed ?

The whole tag itself is stupid, thats the problem, maybe doctors should label it IBS 1-5 for seriousness attached to it or something. At level 5 you can tell them they have no clue what you are going through, at levels 2 and 1 though, you need to understand they actually do know for the most part.

In the end, its the labels fault, and that gets laid at the doctors feet since they need to label everything, even when they don't know whats wrong.

 

[UnXmas]

Just to clarify, I'm not trying to make light of IBS, but I do think there are certain features that can be part of the Crohn's experience which do not occur with IBS: surgery, hospitalisation, the side effects of the more powerful meds, and the emotions that come with them.

On the other hand, as I mentioned in my first post on this thread, IBS can be treated very dismissively by doctors (and perhaps by people in general), so those with an IBS diagnosis are forced to endure horrific symptoms without the kind of recognition that they are legitimately sick that people with Crohn's would usually have.

 

[UnXmas]

I actually had an uncle that died from what they had termed back then as IBS. He had gone to the hospital in pain and such many times and it was always labeled IBS, the last time he didn't go until he had collapsed and my grandmother found him.

So exactly what I said, IBS pretty much means undiagnosed. Even now IBD awareness is fairly new, 20 years ago it was almost nonexistent. Like I said, atm I am in the severe IBS label group as I didn't have the coverage needed to see specialists, which now I finely do, so maybe I can finally get it accurately labeled. I listed most of my symptoms above, like I said, does that sound like IBS ? Thats still the tag I have until diagnosed though, same as many on these forums also had to.

So do we make light of all those people and then later send them an apology card when they are actually accurately diagnosed ?

The whole tag itself is stupid, thats the problem, maybe doctors should label it IBS 1-5 for seriousness attached to it or something. At level 5 you can tell them they have no clue what you are going through, at levels 2 and 1 though, you need to understand they actually do know for the most part.

In the end, its the labels fault, and that gets laid at the doctors feet since they need to label everything, even when they don't know whats wrong.

I'm very sorry about your uncle, however, I think most doctors would agree that what your uncle had could not have been IBS. By definition, that diagnosis had to be changed when things got serious, and he must have had incredibly bad doctors since that didn't happen - I'm very sorry for that, and hope you will be able to find much better treatment for yourself.

Edit: I was misdianosed with IBS for many years. That diagnosis was disregarded when I first needed surgery (and also found a much better doctor). I think this is more usual - that people carry the IBS label, until evidence of physical harm is found. From that point, when hospitals, steroids, surgeons, etc. become involved, doctors no longer label them as IBS. I do get what you're saying, that people get told they have IBS, then later find out that along it's been Crohn's or something else, but there are certain things that are experienced only after that change in diagnosis (or which prompt the change). I expect there are also many who are diagnosed with IBS, and never have that diagnosis changed. Whatever their real diagnoses may be, they don't ever experience surgery, etc. that people with Crohn's often do, as if they did, they'd no longer fit the IBS criteria.

 

[juggys69]

I'm very sorry about your uncle, however, I think most doctors would agree that what your uncle had could not have been IBS. By definition, that diagnosis had to be changed when things got serious, and he must have had incredibly bad doctors since that didn't happen - I'm very sorry for that, and hope you will be able to find much better treatment for yourself.

Like I said, IBD awareness was almost non existent 20 years ago, and this happened 30 years ago. It wasn't so much the doctors fault as it was the medical communities by and large for not having that awareness.

I know you understand exactly what I am trying to say anyways, I've read a lot of your story, you yourself where once in that "IBS" boat, and a lot of your story is a horror story. So think about back when you were undiagnosed and in that IBS boat, then read this thread in that light and you will understand exactly what I am saying.

BTW, even on my uncles death certificate I'm sure to this day it still reads IBS that led to severe internal distress as cause of death, just is what it is.