Stomach problems for years, could it be Crohns?

[mikenova]

I am going to be 24 but this started around 17.

It started with stomach pain that wouldn't go away for 6-7 weeks. The diagnosis was reflux. I didn't think twice because it got better.

A year or two later I got the same episode just longer this time. After this episode my bowels never seemed to work correctly. I had episodes where I would go 3 times a day and episodes I wouldn't go for 4 days. Sometimes it would be really wet and sometimes it would be really hard. The other issue was undigested food in my stool. It could be anything from peas, corns, carrots, lettuce, rice (etc.) and this wasn't rare, it would happen in nearly every stool passing. The other issue I had which I just thought was from pushing too hard and wiping too hard was episodes of what they call bleeding hemorhoids.

My stomach problems would come and go and I would attribute it to reflux. Last year it was particularly bad and I had an endoscopy that said I severe reflux and once again it passed. I stopped drinking soda, coffee, and orange juice and stayed away from fried and spicy foods and once again it seemed better.

About 6 weeks ago, I had the worst stomach pain in my life. I went to a new Gastroenterologist and he ordered an xray. The xray showed the bowels aren't emptying fully. He then ordered a CT scan. The CT scan showed inflammation near my small bowels and possible scaring. The radiologist said it was Pancreatitis. My doctor said the bloodwork was negative for pancreatitis. He said he doesn't think it is an ulcer because the nexium I've been taking for over 5 weeks hasn't done anything.

He is sending me to an Upper GI/Small Bowel Follow Through exam and he mentioned Crohn's on the order as a potential diagnosis.

What does everyone think? I hope the study I have on Friday will shine more light on what is going on.

 

[Sojourn]

Welcome to the forum. It sounds like it could be Crohn's, but I wouldn't want to jump to any conclusions and hope that it's something that's easier to treat than Crohn's. Before I was diagnosed, I was also passing undigested food but it was mostly roughage like lettuce. After diagnosis, I learned not to eat that kind of food.

Hope you find out what's wrong so you can find some kind of treatment plan.

 

[Kev]

Hi Mikenova.. Welcome to the forum... The symptoms you've described could be from a number of things. I wouldn't fret about crossing the bridge to crohn's till after your next series of tests are complete. As regards testing, keeping in mind that you have had some episodes of rectal bleeding, perhaps on top of the upper GI/Small bowel follow through, the doctors may want to perform some tests on the rectum, anus and large intestine.. a sigmoidoscopic or colonoscopic exam, to determine if the bleeding is indeed just hemmerrhoids (sp?), or if there is some ulceration within the colon. Its' a case of... well, if you're going to be in the general vicinity, why not check out stem to stern? Or has the GI already done something along those lines? I had a GI do an in-office sigmoid scope on me w/o warning. It was no big deal, per se, but I wasn't neither prepared nor prepped for it, if you get my meaning.. I can't fathom what he expected to see under the circumstances... Doctors may be reluctant to impose those tests on a patient all at once, or they may feel pressure from the 'system' to limit testing to just what is absolutely necessary BASED solely on what the patient relays to them in office. Its six of one, half a dozen of the other... but, if you can take it, it certainly speeds up the process of getting diagnosed. I think that knowing is better than not knowing and that the time spent wondering/worrying is worse for the body than the stress of getting it all done at once, or as soon as scheduling/testing permits. Know what I mean? Talk to your GI, and determine his reasoning for not doing both now

 

[mikenova]

Thank you for your replies.

My doctor wants to limit the more invasive stuff until it is necessary. If he found something conclusive on the follow through he wouldn't have to subject me to other stuff. He did mention an endoscopy and colonoscopy and stomach emptying test if we need it.

He is not shy about doing the other tests, he just wants to avoid it if it isn't needed.

I am also an ashkenazi jew and I read it is more likely among us. I never thought about Crohn's until they saw the inflamation in my bowels. The more I read the more it sounds like me (unfortunately)

The only thing I wonder is about the times I would be fine and it would come back. Isn't Crohn's pretty constant? I would have periods over a year where I would be completely fine.

 

[hanaa al baydany]

Hi. i wish u don't have chrons.yes i red that its more commen chrons to jew or black african american. but my case its different i am muslim in Cairi Egypt.and i live with chron's.
I the main issue that u r diagnosed it to resiceve the proper treatment.i wish u the best.and we all are with u in our world family

 

[Kev]

Sigmoidoscopy and colonoscopy are pretty invasive. Oddly enuff, the latter is less physically stressful than the former, just my humble opinion. The anesthetic helps. The prep is the worst part of the process. Anyway, you mentioned bleeding, so it just seemed appropriate to suggest it. If the doctor suggest either, don't let fears about these tests stand in your way. Either is a great diagnostic tool used right. I would also pass along the following. My GI is of the opinion that I 1st developed this disease 20 years ago, yet remained in a virtually symptom free hiatus for a period of 10 yrs, then another of 5 yrs. So it seems that you can have what amount to long term remissions with any IBD.
I also commend Hanaa's comments and sentiments. We truly are a 'family', and if we need confirmation of that, then just see how this disease treats us as 'equals'.

 

[soupdragon69]

Hi Mikenova,

Welcome to the forum!

There are many tests that can be done and as you are probably aware they can show different aspects. The scopes allow for direct visualisation and the barium follow through will show possible narrowings/strictures for instance among others.

It does come down to the skill of interpretation of the doc looking at them so keep that in mind. Recently I had a CT and barium follow through that showed problems and my second colonoscopy (first showed severe ulceration and that had healed alot before my second) said there was nothing wrong. Fortunately for me my GI looked at the bigger picture and listened to how I felt! He decided I have a more grumbling type of Crohns that is harder to control and at the end of the day a scope can only go so far even though it is gold standard as the biopsies usually provide accurate answers.

What I would say to you is keep at them til you get answers you are satisfied with. YOU are the one living with the pain etc and YOU are the one that has to cope. Keep posting here too we will always listen and help even though we are not of a medical background ourselves but we do understand what you are going through!

Hope you get answers soon. Thinking of you

 

[mikenova]

Thank you all for your encouragement. As nice as you all seem I hope I am not a permanent member of your family but a quick visitor.

Are there any signs to look for in the Follow Through that are indicative of Crohn's? I want to make absolutely sure my doctor knows what he is talking about.

I also don't have bleeding in my stool all the time just occassionally. I am basically looking for anyway out of this actually being Crohn's.

Is the only definitive test a colonoscopy or a Sigmoidoscopy? Are my CT results troublesome for Crohn's? I am also not underweight at all, I'm actually overweight but the last month or so I've lost about 10-15 lbs which I thought was because I was trying to, maybe it wasn't so much me trying to afterall. Don't you have to be skinny to have Crohn's?

 

[soupdragon69]

Hi again,

We always all hope anyone new isnt diagnosed with an IBD whether its Crohn's or Ulcerative Colitis or Indeterminate Colitis...

Your doc will know what they are on about believe me if they are gastro specialists. The radiologist also reports the results and they usually meet up to discuss it - or they do here in the UK not sure about where you are..

Bleeding doesnt have to be constant is my thought on that..

Scoping is the usual gold standard as I said earlier but it is a combination of tests, results and how you are so the more info you can give them the better ok? No matter how trivial or silly it seems! Your CT results may point to Crohn's or it could be something else as so many things can cause inflammation or scarring. Thats what your Docs are there for so keep at them!

In relation to the weight aspect I am overweight so it doesnt always follow.. Alot of folk do lose weight but there are a few of us here that are over rather than under.

Crohn's also comes and goes and doesnt have to be a constant thing.

What I would say to you on the ethnic/race aspects is I was originally thought to have Coeliac Disease, I am of irish decent and the odds are extremely high for those of north and west irish decent especially to about 1 in 90-100. It turned out I have Crohn's with gluten intolerance but am not an outright Coeliac.

That's why its so important to stick with it until you get a correct diagnosis because there are so many things it could be and it may not be Crohn's for you (fingers crossed).

Keep us posted on how you get on because we will always be thinking of you ok?

 

[mikenova]

I spoke to the doctor to let him know I scheduled the follow through for Friday and asked him if it could be Irritable Bowel Syndrome. He said I wouldn't have inflammation if it was Irritable Bowel Syndrome, is that true?

He said the amount of inflammation on the CT scan can only be caused by long term complications. It isn't possible to have that kind of inflammation suddenly. He said based on other patients and his experience he really believes it is Crohn's, but of course he wants to make sure before diagnosing me. I would go for a second opinion anyways if he did.

I'm sorry if I keep rambling. When I type it out, it helps my nervousness and anger escape.

 

[soupdragon69]

Hi Mike,

Your Dr is right on the inflammation building over a long period of time. Our bodies cope remarkably well compensating and trying to repair itself before we even notice we are having problems in many instances..

No one here will have a problem with you "rambling" ok? It helps you to formulate your thoughts and work through how you feel and that is just as important as getting a diagnosis.

If you have had probs for years like many of us have here it can be a mixture of relief and anger because you are relieved you finally know whats wrong but angry because you suffered for so long if that makes sense? Also the majority of us dont want to know initially or think we are making a mountain out of a molehill or perhaps we have already been told its something else like IBS. THATS why its important to stick with it and get an appropriate answer. YOU need to have peace of mind and also then you can start the journey to better health finally and improve your quality of life again!

Tell us why you are nervous and angry Mike and we will listen - you will also find folk here who have felt and may still feel as you do in relation to having a diagnosis recently.

Keep posting, we are here.

 

[Kev]

Yeah, Mike.. I echo soups thoughts. Listen, after the mini novels that I post, no one here is going to fault yours. And dealing with it, even if it's just posting it on here, helps. We've all come to that conclusion. one of the non physical apsects of a chronic illness is that it tends to isolate us. Here, we are a common community. Anyway, from a strictly laymans perspective, inflammation is the sort of dividing line between IBS and IBD. As for how long it takes for an inflammatory response to 'appear' on that point, based on my own personal experience, I would respectfully disagree with soup. in my case, I had surgery to remove the inflammed portion of my colon. First follow up scope was A-OK. My next, only a few short weeks later, showed inflammation of the rest of my colon EXCEPT for immediately around my resection incision. Now, the extent of the inflammation is another story. Apparently, altho widespread, mine was too new (or immature, somewhat like myself) for the dr's to determine if I had UC, or CC, or CD. Deep penetration of the inflammation takes time, and it almost always indicates crohns, not UC. As for bleeding, or the appearance of bright red, easily identifiable blood, that could come or go, or there could be other complicating factors, like internal hemmerhoids (sp?). widespread inflammation of the colon is typcially indicative of UC, and usually results in more bleeding. A person who smokes usually has less bleeding, as it constricts your circalotory (sp?) system. however, you could have widespread inflammation higher up in the GI system, and that may cause the blood to appear as very dark stool. It's a complicated disease, there are many factors and we all show symptoms just a little differently. That is why it can be a bugger to get diagnosed correctly. I agree with your take that EVEN if your doc comes back with a definite crohns' diagnosis, it's worth getting a second, unbiased opinion, even if just for peace of mind. doctors aren't perfect, its a hard disease to pin down, and a serious enuff diagnosis that it's worth double checking. Having said that, keep in your mind that an IBD diagnosis isn't the end of the world, life can & does go on, OK
There are PLENTY of other diagnosis's (sp?) that are a world of hurt worse.. If you have any questions, thoughts, fears, here is the perfect place for them...

 

[soupdragon69]

Fair comment Kev with your thoughts... was thinking more in relation to a long standing inflammation that causes that level of probs and also how our bodies naturally fight whatever comes along. Just didnt put it too well..

 

[mikenova]

Good news I think.

The SBFT was negative. I thought this meant I didn't have Crohn's until I read this study. It basically says that SBFT is useless and CT and Pill Endoscopy are the way to go. My CT scan was abnormal and showed findings consistant with Crohn's but the SBFT was negative. I really hope it isn't Crohns but after reading this study I can't say I am any closer than I have been. This test seems like a waste of time.

http://radiology.rsnajnls.org/cgi/content/full/238/1/128

Can anyone confirm one way or another? I just want an answer already

 

[soupdragon69]

Hi Mike,

Not one of us on here can confirm anything for you unfortunately. Think you understand now what I meant in my earlier posts about reporting of tests eh??

Also that scoping is the gold standard... But as I also pointed out it is a combination of information that leads to diagnosis like all the tests, bloods, examination by the docs and listening carefully to all information you give them. So make notes and lists if you need to for each time you see your gastro team so you iron out all the things that niggle you.

I was told by a registrar in July this year after my second colonoscopy that if he didnt have proof from my original scope last december he would have told me I just had IBS and not Crohns because my terminal ileum has healed so well. The problem I now have is whether or not I have strictures and a scope cant get to where they think I have them. The CT and Barium follow through both say there are probs and the scope says not. So understand why you are frustrated. Luckily for me my consultant listens to me and agrees I have a type of ongoing grumbling crohns that he says is difficult to control. Oh joy...

Hang in there you will get answers eventually, I know its frustrating but keep posting and talking to us here - if nothing else we totally understand where you are coming from and why you feel as you do.

 

[mikenova]

Jan thanks so much

I just wonder why they gave me this test if the studies make it seem like the one that is the least effective. It seems it was a waste of time and got my hopes up for nothing. I am going to demand a colonoscopy even though I can't say I'm looking forward to it.

 

[soupdragon69]

Mike,

Just take it one step at a time. Make sure you give them as much info as possible no matter how trivial it seems ok? Sometimes a follow through can give answers and it is just one piece of the puzzle at the end of the day to building the complete picture..

They finally decided with me in July that I have severe IBS on top of my crohns so I have fun figuring out which is which some days ;-)

YOU WILL GET THERE OK? We will always be here to rebound off no matter what your diagnosis is remember that!

No one loves the colonoscopy but it may well give you an answer - just remember you need lots of info for a complete rounded out diagnosis alright? Keep at them and pushing for answers til you get one you feel is right for you. Then you can move towards feeling better and feel more in control again. Its the out of control aspect that gets many of us with this disease or any other because your guts dont do what you want and the docs dont either ;-) However, you can regain some control by having an input in the care/tests planned and thats by asking questions and making notes of things you want to know etc.

Keep going, we are right there with you...

 

[Kev]

Yeah, Mike.. If you need to vent, rant, rave, or just shout to the hilltops, this is the place. And I think you'll find that most of us here have been through the turmoil of getting a 'definitive' diagnosis. Problem is that its a tuff lil fellow to pin down, AND most testing just give an indication. It's, unfortunately, not a case of a light goes on that blinks 'CROHNS'. Many tests are conclusive in that they'll show factors, ie definite indication of infection, definite inflammation ,etc..
Anyway, my point is, that if you don't have a lot of patience, this disease will teach you to develop it... and, till then, losing what patience you have isn't going to help. A diagnosis, or tentative diagnosis of this type, has stages you have to go thru.. Anger, fear, denial, acceptance, etc., etc.. Give yourself some time, if this is Crohns, you'll have a lifetime to adjust to it. Does that make any sense?

 

[mikenova]

I got the full report from my CT scan. It showed stranding of my bowel wall and lesions as well. Is this pretty common with Crohn's? I guess I'm now hoping it isn't anything even more serious.

I am having a Colonoscopy and Endoscopy done next week. I will let you know when I know even more.

 

[Kev]

The phrase stranding of the bowel wall is one that i'm not familiar with. maybe it is better known to others on the forum. As for lesions, I'll go out on a limb and that I'd assume that term is interchangeable with ulcerations.. (big ol assumption, OK)
If that is indeed the case, then they are pretty typcial in IBD. anyone with better info is more than welcome to contradict me. Keep in mind I'm no doctor, although I did play one as a kid... but then again, didn't we all (hopefully)..

 

[mikenova]

Today is the day

I am having my colonoscopy and endoscopy today. The prep was horrible. I did not expect it to be that bad. Is it this bad for everyone?

I was on the toilet for about 4 1/2 hours and my bum is so sore right now. I have went 4 times this morning as well. I thought it wouldn't be this bad, is this normal?

I literally went at least 35 times last night, it was a horrible experience.

I will update you all when I know something more. Pray it isn't Crohn's or something even more serious.

 

[mikenova]

I had to add that at times it comes out clear and others it comes out orangish. I have a sneaking suspicion that is blood.

 

[soupdragon69]

Soon be over Mike hang in there. Thinking of you!

Yes the prep is horrible and its the worst part.. Have had both done too and at least it helped to provide answers.

The good thing for you is both are done the same day! Mine were on different days.

Let us know how you get on.

 

[Kev]

Yeah, Mike.. The prep and the results of the prep are the absolute worse parts of it. What you experienced is typical, all but the initiated would find it hard to believe. you are over the biggest hurdle, the rest is fairly routine. all the best, OK

 

[mikenova]

You are right about the procedure being a breeze.

They found gastritis from the endoscopy and inflammation and some lesions he took some biopsies in my small intestine. It was lower than the CT scan. I should find out the biopsy results by Friday.