"It could just be IBS..."

[Keralin]

A little bit of back story here: I was referred to a Gastroenterologist a little over a year ago because of weight loss and abdominal discomfort. In august I was given a working diagnosis of Crohn's disease, based on a combination of colonoscopy and capsule endoscopy findings (erosions around the appendiceal orifice and 12+ ulcers in the ileum). I was put on asacol, which didn't work so was "upgraded" to entocort which also did little to ease my symptoms and I continued to feel worse, have more pain, and lose more weight.

I was on meds for 3 months before my main doc referred me to a Crohn's specialist and upon my second set of testing, all signs of what he thought was Crohn's had disappeared. I then had a balloon enteroscopy to inspect the ileum further on up, but that came back clear as well, only the colitis that was present during my first colonoscopy was back and much worse this time around (and two months after a completely normal colonoscopy). This is when they decided to rescind my diagnosis.

I've been beating my head against the wall with this thing, trying to get some sort of treatment, because at this point the fatigue is intolerable, the runs have me up all night, and the pain has me in tears most days. In november (a month after I was taken off entocort), I started passing blood periodically and became quite anemic. All of the GI peeps keep telling me "it's probably hemmorrhoids" and my favorite "the anemia is because you're malnourished from not eating enough". They had been trying to get me to see an eating disorder specialist. Yesterday I had colonoscopy #4 to monitor the nasty spot that showed up in December. But, guess what? It's gone. The TI was also clear as far as he could see. I have another capsule study scheduled for two weeks from now, but now he's telling me it could just be IBS and we'll do the capsule study to close the door on Crohn's. I had a complete breakdown last night (I partially blame the propofol), and I feel so bad for my husband that he has to see me like this. Most days I try to keep the whining to a minimum so at least one of us can have a little peace.

Anyhow, the just IBS thing is demoralizing. Correct me if I'm wrong here, but as bad as the symptoms of IBS can be for people, if it truly were JUST IBS, would I have had ulcers and bleeding from it? I've read that the two can coexist, but I'm not sure how open to this idea most doctors are. As much as I like my GI doc, I think it may be time to abandon ship and find a new doctor, or tough it out with him until I move to a state with much better medical care in 5 months. My fear is if we call it IBS and treat it as IBS, and it actually is Crohn's or both Crohn's and IBS, that I can look forward to eventual catastrophy. If I accept it as being IBS, I'll be less likely to seek care for what I perceive to be alarming and write it off as "oh, it's just that darn IBS again..."

 

[Kero]

Getting a diagnosis seems to be tough for some. It would seem that maybe the meds were working? Hence why no signs in the second set of testing? Hope you get some answers soon. I understand the constant pain thing, been in pain myself for 8 months or so now. I feel bad for my hubby too

 

[Chickadee]

I'm so sorry you're going through this. I've also had troubles with diagnosis. I would suggest getting another opinion. The appearing and disappearing ulcers don't sound consistent with an IBS diagnosis. Did you have any biopsies taken?

Also, is that your Green Cheek Conure in the picture? I have my own little GCC, and I love him dearly. They're such fun companions!

 

[UnXmas]

Personally, I don't believe IBS exists as a distinct condition. I believe it is the term doctors use when they can't find the real cause of the problem, and hence there are many, many disorders all being called IBS.

You are correct that by definition, IBS can not cause ulcers or bleeding. Though haemmorhoids can cause bleeding - has your doctor actually located the haemmorhoids he thinks you have?

I'm sorry I can't offer any constructive help. Perhaps even without the official Crohn's diagnosis you can find a doctor who will make sure you are tested regularly? This would mean that should you actually have Crohn's, or any other potentially serious condition that caused the ulcers, if it recurs or develops further it will be picked up on promptly and avoid serious complications? I know some doctors would be reluctant to run the more invasive tests - colonoscopies, etc. - if there isn't sufficient evidence that it is necessary, but other forms of close monitoring - at the very least, regular blood tests for signs of inflammation or deficiencies, an official record of your weight to check you are not losing too much, less invasive imaging tests - might be possible? Since you've already had tests come back with indications you're anaemic, surely some monitoring would not be viewed as overreacting?

 

[LindaS]

I don't think IBS causes the symptoms you're having. It doesn't cause weight loss or erosions or ulcers. If the doctor doesn't take random biopsies during the colonoscopy, he or she could miss patches of disease that are not visible to the naked eye. My GI likens this to acting like a dermatologist, only biopsying visible disease, and ignoring the fact that Crohn's can be present under the surface.

I'm sorry you're having such a hard time getting a good diagnosis and treatment.

 

[Essieluv]

Mmmm, I'm right there with you. I've been to so many doctors, saying that my horrible symptoms are just IBS. It is so annoying and disheartening. I cannot believe that IBS can cause the awful symptoms that I have and make one so incredibly ill- it just doesn't seem right. Plus the fact that none of the IBS medications or diets have helped me at all. I don't even know what to do anymore. I can't offer much help, but just know that you are not the only one. I wish I could give you a big hug and we could have a cry session together.

 

[Jennifer]

I'm so sorry Keralin. I think your gut is right about finding another doctor. The blood loss alone and having a GI say that it's probably IBS would be enough to make me just walk out but the rest of your symptoms on top of the treatment plan they tried, Asacol and then "upgrading" to Entocort? Was that adding Entocort on top of the Asacol or were you taken off of Asacol and switched from a maintenance medication intended for Colitis to a steroid which is not intended for maintenance? Then they have the nerve to say that the blood loss is "probably" hemorrhoids. You know they can do a rectal exam on the spot and find out for sure right? You need a GI who knows what they're doing because this one doesn't seem to be doing you any good. The sooner you start looking for a new one the sooner you'll get the treatment you need. Keep us posted.

 

[Ihurt]

Hey there,

Just wanted to add, did your GI tell you he seen hemmorids when he did the colonoscopy?
He would have seen them during the colonoscopy. I have also been diagnosed with IBS, even though my symptoms are not typical for IBS. IBS just means they don't know. IBS does not cause ulcers in the intestines so I am not sure why your doc would say IBS when you had bleeding and ulcers. I would probably get a second opinion. I am sorry you are going through all this. One thing that can happen is that it is possible to have IBS or rather irritated intestines when you have crohns or any digestive disease for that matter. I mean if your doctor is not treating your symptoms, I would find another one that maybe specializes in Crohns. I do feel for you, I myself am not even sure where to turn as most doctors I have seen are pretty clueless..

 

[Keralin]

Hemmorrhoids were noted during a colonoscopy I had several months ago, but I don't see blood on the tp. I mostly notice it when, on the rare occasion my bm's are actually semi-formed, when it sits in the bowl for a bit the water turns dark maroon. I have also had a positive occult blood test. I suppose it could be the source of the bleeding, but I'm not convinced.

Thing just don't add up to me. It is possible that things were improving while I was on entocort, in terms of actual gi inflammation, but it had very little impact on how I was "feeling" overall. Although, given more time, perhaps it would have helped more? I was only on it for 1 month before they told me to stop.

I was relieved/distraught when I was tagged with the Crohn's diagnosis in August, and I had just started to accept it when they decided "oops, nope....this can't be crohn's". How great would it be if it's not? Pretty awesome, but that doesn't negate the fact that something is clearly wrong, and I would just like to know what it is so I know (and the doctors know) how to treat it. Everytime the doctor says he doesn't think it's Crohn's, I look less than thrilled. "But it's a good thing!". I know...but if it has taken this long to rule one thing out, how long until we find out what the heck is actually going on with me? Uuuugh.

I swallowed the pillcam today, and am hoping it gives the doctors some useful information. Also, validating the pain I've been having would be a good news/bad news scenario, because if this doesn't show anything, then I'm in in pain for no good reason....which means I've finished going crazy.

Thanks for all of the input. I know of lots of people have been down the same road with this, and I wonder how they keep their sanity intact!

 

[Essieluv]

I really hope the pill cam is able to show your doctors why you are so ill. It's not normal, and I feel so much sympathy for you. Praying and keeping my fingers and toes crossed for you.

 

[Keralin]

Pillcam results: Patchy erythema in the TI, but no ulcers this time around. Crohn's has not been ruled out, but it doesn't appear to be the sole cause of my symptoms.

I had some fasting labs done at a follow-up appointment with my primary doctor, and the results were less than comforting. Blood glucose was 48 after an 8 hour fast, and creatinine was 2.5 times higher than it should have been, with a GFR of 29. TSH was also low, so my thyroid has gone back into overdrive for some reason. I'm being referred to an Endocrinologist for the thyroid/hypoglycemia issues, and to a nephrologist to figure out why the heck my kidneys are failing. I feel like a high mileage car...when one thing gets fixed, 5 other things break. Ha! On the plus side, my liver enzymes are within normal range after being elevated for several months.