IBD and IBS

[Cookie]

So I used to think that having both IBD and IBS was BS because IBS was simply a way of doctors saying " We don't know what's wrong with you...go away". But recently I have been having symptoms similar to a flare but not really the same as when I flare. And after reading some literature on IBS and posts on an IBS forum, I think I have IBS, which I guess could be explained as having symptoms without any evidence of active IBD. I have had major cramping, rumbly guts, frequent, urgent bowel movements consisting of shoestring stools alternating with bouts of constipation that doesn't last for more than a day, but really, really hard stools which are hard to pass. But it is definitely different than when I flare. The bouts are more controlled or predictable instead of happening at all hours of the night. It's just different and I don't know how to explain it. I talked to my GI about it and he agrees that it could be IBS but he wants to do a colonoscopy to be sure there is no active disease (my blood work has been good).

I am keeping my fingers crossed and expecting everything to come out good. I was just wondering if those of you that have been told you have both IBS and IBD, do you know the difference in your symptoms? How do you know when it's your IBD acting up or not. Do you go through testing every time? That seems extreme to me. But if you don't know what's going on, how do you know how to treat it?

 

[Jennifer]

I have had major cramping, rumbly guts, frequent, urgent bowel movements consisting of shoestring stools alternating with bouts of constipation that doesn't last for more than a day, but really, really hard stools which are hard to pass.

Thin ribbon shaped stools are generally a sign of a stricture which is either an inflamed bowel or a narrowed bowel caused by scar tissue. It makes it hard for anything to pass through which can also cause pain whether its soft stools and especially if larger/harder stools were to pass through.

I was just wondering if those of you that have been told you have both IBS and IBD, do you know the difference in your symptoms?

I don't have IBS but I do have Crohn's Disease. I suppose the difference would be any symptom that's strictly related to IBD such as bleeding or vomiting or constant pain even after bowel movements etc.

I'm going my WebMDs symptoms of IBS:http://www.webmd.com/ibs/guide/irritable-bowel-syndrome-ibs-symptoms

How do you know when it's your IBD acting up or not.

The answer to that is really the answer to your above question. When you have symptoms that are strictly for IBD (a few listed above). No amount of changing your diet or passing any amount of stool will make the symptoms go away.

Do you go through testing every time?

It depends on what's happening. If you're bleeding for example, they may want to do a colonoscopy to find out what's causing it (ulcer, abscess, fissure etc.) or if you only saw a little blood they may simply change or add medications to see if it goes away with treatment. Either way, treatment is needed. Its also a good idea to have a scope done every few years even if you are in remission because often times there could be something happening in there that you don't notice or you didn't contact your doctor when you had minor symptoms. It's preventative medicine, much like the maintenance drugs we take to keep us in remission.

That seems extreme to me. But if you don't know what's going on, how do you know how to treat it?

It may sound extreme but that's what you need to do when you have a chronic illness that has no cure. If someone were to never treat themselves, then they open themselves up to a number of complications which could result in surgery, stoma, cancer and even death. Its important to get blood work done to check your inflammation levels etc. and more frequent blood work to check other parts of the body if you're taking drugs that suppress your immune system (these can damage other organs over time or if in large doses). Like you said though, if you don't know what's going on, how do you treat it? After your diagnosis that doesn't mean you'll never have to do any of those awful tests ever again. I've had my fair share of barium for x-rays multiple times after my diagnosis and endoscopies and colonoscopies. You have tests done if you're taking medication yet you come into a flare (out of remission) so they can get you back into remission by taking the right meds or by having a bowel resection if needed after medications aren't working.

 

[mikeyarmo]

Hi Cookie,

I have seen other members on the forum be in a similar situation (having IBS before IBD or having joing symptoms...), but I think it is hard to classify exactly what IBD symptoms are. For example, I have IBD and my main issue was always constipation (which is not typicaly for most IBD sufferers).

A colonoscopy sounds like a good idea to see what inflammation exists and to what extent it is impacting your colon.

I think tracking your symptoms is important so that you can get a better idea of what your most common symptoms are and you can give a clear picture to a doctor what you have been experiencing.

Good luck and I hope you get a clearer picture of what you have soon.

 

[StarGirrrrl]

And not forgetting a diagnosis of IBS should not be made after just a normal colonoscopy. There is the upper endoscopy and barium meal. Crohn's can be anywhere from your mouth to anus

 

[Cookie]

Thanks for the replies guys, and for the link Crabby. That is actually the page that made the lightbulb go off that maybe my symptoms are IBS and not a Crohn's flare at all. It fits me to a tee. That is what is so confusing about this disease...you just don't know what's going on.

My initial diagnosis of Crohn's colitis was brought on by frequent, uncontrolled watery bowel movements (15-20) times a day at all hours of the day and night with no rhyme or reason. I had mucous but no blood. Crohn's was suspected based on blood work and was confirmed via colonoscopy and biopsy. I also had a fistula. That was 8 years ago. Since then, no major problems with bowels, but lots of problems with fistulas. Now that that seems to be under control...this. But it's nothing like what I had the first time. That's why I am confused and was just wondering if anyone has a situation where they know they have both IBS and IBD and they can distinguish between the two.

I guess all will become clear (hopefully) when I have my colonoscopy on Tuesday. I will keep you all posted.

 

[Amay]

Am going through the same thing at the moment. I have CD (in remission, had op 15 years or so ago, currently no meds) but last few weeks have been awful.

Total urgency for the toilet and so many times during the day (and night). Will probably go to the docs this week to ask for a blood test, but wondering if need further investigation. I think the docs themselves find it hard to differentiate between the two - IBS and IBD- that's not a criticism (my husband is a doc!) but they don't have X-Ray eyes and can only assess on the info given to them.

I just feel so rubbish at the moment. Lacklustre and having to cancel visits, days out, meetings etc, just because I feel I need to be need my toilet at home and not having to explain myself out in public (or heaven forbid, stuck in public somewhere where there's only one toilet with people banging on the door wondering why you're taking so long - that must have happened to lots of people on this forum. I hate and fear that.) Sorry, end of rant.

It's been a long tiring day - was supposed to be a day for me to choose to do whatever I wanted (Mothers Day) and spent most of the day in the bathroom or exhausted. What fun!

 

[Keona]

here is an article I was just reading on the difference between IBS vs. IBD:
http://www.badgut.org/information-centre/the-irritable-gut-ibs-vs-ibd-1.html

Also; here is a chart:
http://ibdcrohns.about.com/cs/ibs/a/diffibsibd.htm

not sure if that helps any...
Wendy

 

[Amay]

Thanks, Keona, I had read the second but not the first. It's still difficult to say...will monitor my symptoms carefully - keeping a pain diary - it helps me deal with it.

Good luck with your surgery - I notice it's tomorrow - I hope it helps your symptoms.

 

[Jennifer]

But it's nothing like what I had the first time.

That's another problem with IBD. Even though you're the same person, that doesn't mean that every time you're in a flare that you'll have the same symptoms. You may not even notice your symptoms and think that they are mild but your blood work can show otherwise. It's really weird and I wish it were consistent but it never really is as some flares are more mild than others.

Good luck on your scope!

 

[Keona]

Thanks Amay

I wasn't sure if the links were relevant ... I find the entire thing confusing to me even still..
I hope the diary helps. I have been reading about Crohn's for a long time now and still.. have no idea whats going on...lol
(okay..a little more knowledgeable...but still very confusing).
All I know is I came to the right place and this forum helps me out a lot.
Keep coming around and it will become a little clearer..
I hope you find answers soon
Wendy

 

[Cookie]

Please Help!

So I had a colonoscopy last Tuesday and doc said everything looked good. Scarring in my large intestine showed Crohn's in remission and he did not find involvement in my small intestine or elsewhere. So he told me to take fiber supplements (basically treat me for IBS). Well, two days ago I noticed a small amount of bloody mucous in my stool. Then yesterday I got my period. The only other time I have ever noticed blood in my stool was the first day of my period last month. I thought it was odd, but then kind of blew it off because it didn't happen again. Well, today I just went to the bathroom and there was LOTS of bloody mucous encasing my stool. So I am worried. Colonoscopy shows Crohn's in remission. Where is this blood from? I have seen it 3 times and each time it coincided w/ my period. I have a history of rectovaginal fistulas, but I'm pretty sure that's not going on right now (at least there is no gas coming from there which is the usual tell tale sign). Anybody have any thoughts of what is going on?? Yesterday was the first day of my period and I spent at least two hours in the bathroom. And the cramping was horrible!

 

[Rebecca85]

Maybe you have endometriosis? There are a few articles on it floating around the forum (and on the wiki), and I remember someone saying that endo can grow around the bowel too. And it's worse at certain times of your cycle.

 

[Bookworm]

So I had a colonoscopy last Tuesday and doc said everything looked good. Scarring in my large intestine showed Crohn's in remission and he did not find involvement in my small intestine or elsewhere. So he told me to take fiber supplements (basically treat me for IBS). Well, two days ago I noticed a small amount of bloody mucous in my stool. Then yesterday I got my period. The only other time I have ever noticed blood in my stool was the first day of my period last month. I thought it was odd, but then kind of blew it off because it didn't happen again. Well, today I just went to the bathroom and there was LOTS of bloody mucous encasing my stool. So I am worried. Colonoscopy shows Crohn's in remission. Where is this blood from? I have seen it 3 times and each time it coincided w/ my period. I have a history of rectovaginal fistulas, but I'm pretty sure that's not going on right now (at least there is no gas coming from there which is the usual tell tale sign). Anybody have any thoughts of what is going on?? Yesterday was the first day of my period and I spent at least two hours in the bathroom. And the cramping was horrible!

I'm so sorry to hear you are in pain! I am new to all this and undiagnosed at this point but I've had 3 flares of colitis symptoms so far, 2 of the three started on day 4 of my period while I still had a flow. I suspect that my menstrual cycle does have something to do with bringing the symptoms on. I am due to have my period next week and I am a bit anxious about it bringing on a flare since my last flare was during last month's cycle. Others on the forum have said that some people have worse symptoms during their period so it very well could be tied to that. Can you call your doctor about this?

 

[Cookie]

Maybe you have endometriosis? There are a few articles on it floating around the forum (and on the wiki), and I remember someone saying that endo can grow around the bowel too. And it's worse at certain times of your cycle.

That's what I'm thinking at this point. But wouldn't it have to be inside of my bowel for the blood to come out in my stool? That's what has me worried and confused. I left a detailed message for my GI's nurse this morning and she called me back and said " Hmm, I don't know." I mentioned the endometriosis and she said "Let me talk to the doc and call you back". I thought maybe she would have talked to him BEFORE she called me? Anyway. Waiting on that call.

Bookworm, yes my symptoms have always been worse with my period. Especially since I quit taking BC pills 4 years ago (trying to conceive...unsuccessfully). Another thing that sort of points toward endo. Have you considered that might be your problem as well? I have been looking around on the topic a lot lately and apparently the symptoms can mimic IBD and many women with IBD have endo as well. Like Rebecca said, check out the forum wiki.

 

[Rebecca85]

Isn't it possible to have internal fistulas (from one bit of bowel to another). In which case possibly an internal fistula + endometriosis could cause bleeding?

 

[Cookie]

Would they have seen that on the colonoscopy though? I'm just thinking that if there was ANYTHING that would cause me to have bloody stools, they should have seen it on the colonoscopy, no?

 

[Bookworm]

Bookworm, yes my symptoms have always been worse with my period. Especially since I quit taking BC pills 4 years ago (trying to conceive...unsuccessfully). Another thing that sort of points toward endo. Have you considered that might be your problem as well? I have been looking around on the topic a lot lately and apparently the symptoms can mimic IBD and many women with IBD have endo as well. Like Rebecca said, check out the forum wiki.

I read the info on the wiki forum and then did a bit of internet searching too. My symptoms sound like they could be endo. I already had my menstrual symptoms on my list for the doctor next week but now I have even more questions than before. I found an interesting case study of a woman whose symptoms are very similiar to mine. They thought she had colon cancer but it turned out to be endometriosis in the sigmoid colon: http://www.biomedcentral.com/1471-230X/3/18/. One more piece of information to add to the puzzle.

 

[Rebecca85]

Cookie- depends where it is! Don't forget the colonoscopy only checks a small part of the small bowel. It is possible that whatever is causing the bleeding is higher up. Also, maybe there is microscopic damage, which is only detectable around the time of your period? Have you had any imaging done lately? They could check for endos and fistulas at the same time maybe!

 

[Cookie]

Rebecca you are right. I guess I am thinking that since my Crohn's is in my colon anything else would be too, but that may not be the case.

My GI's nurse called me back and told me to go get a blood panel done today and stick to a clear liquid diet for two days to see if it helps with the cramping. She said they would put a rush on the blood work and have results tomorrow. So I ran over to the lab at lunchtime and it turns out they moved it...right across the street from my OBGYN. Talk about a sign. Anyway, I stopped in there and asked if they could move my previously scheduled appointment up, so I have an appointment with her on May 2. Hopefully I will get to the bottom of this one way or another!

Thanks for all of your input! I don't want to be a crazy person, but seeing all of the blood this morning scared me. It's not something I normally deal with.

 

[Rebecca85]

You're not crazy! Anything out of the ordinary needs checking out. And it's normal to worry in the meantime.