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Scope was a waste of time.....

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Crohn's Disease
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Posted 3/6/2015 5:00 PM (GMT 0)
Well I met with my doc. My scope was completely unremarkable - which is good. She said she got far in the TI and is saying I do not have Crohn's. 100% do not have Crohn's. If it wasn't for this lump that is very much there and palpable, I think she'd be blowing me off at this point.

She says I have IBS (I've lost 20 pounds since xmas.....) and that she thinks this mass is unrelated to my IBS but the two together are making the pain worse.......

The lump is too high to be my ovary. I do not have a hernia. My kidneys were both in the proper place when I had an ultrasound in October. She's stumped.

So I'm going for a CT to see everything.

Ugh. Just ugh.
Posted 3/6/2015 9:17 PM (GMT 0)
Well that's great news that you don't have Crohn's. What is she thinking the lump might be? Good luck with your CT and I hope you get some answers and solutions!
Posted 3/6/2015 9:39 PM (GMT 0)
I so understand your frustration. I just completed an endoscope and a colonoscopy plus a zillion other blood tests to rule out celiac, cancer, adrenal insufficiency, c.diff, thyroid and a bunch of other things. The scopes confirmed my previous diagnosis of Crohn's disease- two small patches in the descending colon plus a newly found one in the ileum, but all not enough to account for the symptoms I have had for over a year- 35 pound weight loss, bloody stools, abdominal pain/cramping, nausea, heartburn, diarrhea/frequency. So it is one of those good news/bad news situations. The good news is that they did not find anything terrible, but still have no explanation for why I still feel so crappy. Hope the CT gives you some answers.
Posted 3/6/2015 9:40 PM (GMT 0)
It is great news. I am just feeling a little lost I guess bc her and my gp were so sure it was Crohns. Now I just feel like maybe most of my aches and pains aren't real......

The only guess she was saying out loud were the things she doesn't think - ovary, TI, muscle. It isn't a hernia. it's hurts to press and when I do press it, there's bubbles. She really doesn't know.

What else could it be? It's just bowel, appendix, and muscles in there. I feel like my small bowel wasn't examined and needs to be examined. It's the only thing it could be, aside from a tumor. And it isn't a tumor.

The CT will surely give some answers.
Posted 3/6/2015 9:42 PM (GMT 0)
Thanks Lisa! I hope you find out why your symptoms are more pronounced then the tests are showing for you :)
Posted 3/6/2015 10:31 PM (GMT 0)
It just make any sense to me. If it wasn't for the is lump then I don't think my doctor would even continue on with me.

I asked her about Celiac (which no one has tested for!) And she doesn't think that's it. She said I'd be way more sick. Well how does she know if she isn't listening? I hurt. I have stomach pain, nausea, chronic diarrhea for years. Joint pain. Back pain. How can she just toss in the towel after one scope? Sure my bowels are fine but there's TONS of more possibilities.

This lump is my saving grace. Without it, the scope would've been the only test I had.......
Posted 3/6/2015 10:56 PM (GMT 0)
Can you switch to a different GI? I agree that your small bowel needs to be studied and they should take biopsies for celiac disease. In the meantime, try going gluten free and see if that helps you. There are tons of folks who have gluten intolerance without actual celiac disease. Also, IBS can be miserable....I don't believe you are making your symptoms up....you need to let that worry go. I don't know what the lump is, but it does seem like a CT can rule out anything too concerning.
Posted 3/6/2015 11:00 PM (GMT 0)
My doc isn't even a GI. She's a general surgeon. My gp referred me to a general surgeon......I didn't even know until I met with her.
Posted 3/7/2015 6:30 PM (GMT 0)
Ya, I agree she wasted your time then...first off, a colonoscopy isn't sufficient to check out the entire TI/small bowel, you would need small bowel follow through tests to completely rule out CD (not saying you have CD, just that she hasn't tested you properly to rule anything out) CD, even a small amount of inflammation can lurk in nooks and cranny's and without proper tests it can easily be missed.

Secondly, not automatically testing you for Celiacs is lame on her part, they start with a simple blood test and go from there, every new GI I've had over the years always checks via blood work for Celiacs even though they know I have a concrete DX of crohn's.

I would find an actual GI that will hopefully be on the ball. Best of luck that you find out what's going on with your health and that it's not anything serious.
Posted 3/7/2015 8:05 PM (GMT 0)
Yeah, you should have been referred to a GI; not sure why you were referred to a surgeon for a scope. Has anyone suggested or do you have a gynecologist? I've a history of endometriosis and it can cause adhesions all in the abdominal cavity. You can have adhesions from prior surgeries too. I had one from my hysterectomy that had my intestine stuck to my peritoneal lining and I could feel a knot, which was uncomfortable. Both Crohn's and endometriosis can cause pain disproportionate to its appearance or severity too.

The GI who did the scope and biopsies that diagnosed my Crohn's assured me when I awoke that it wasn't Crohn's because visually my TI looked "good". When my biopsy results came back it told a different story, showing microscopically visible disease there as well as the visible ulcers in the colon. The biopsies you had will give a better indication of what's there, which we hope isn't Crohn's.

I kind of know how you feel. The first scope I had wasn't really helpful either, but mostly because I was so inflamed, my doctor couldn't get past the sigmoid to see the TI for fear of perforation. Sometimes it takes more than one attempt.
Posted 3/7/2015 8:11 PM (GMT 0)
This is why I hate that doctors hang on the every word of the results of colonoscopy. It's ONE test, and yes a lot of the time it's the smoking gun for us. But it isn't always the whole picture. Crohn's can very well be in your small intestine and they haven't explored that yet. A pill cam really wouldn't be a bad idea, I wouldn't think. Get a good look at those small intestines.

I can't tell you how many times people have scopes and don't get answers. Unfortunately these diseases can be very hard to diagnose (took me 10 years of suffering). My advice is to not give up. Get another opinion, and then another opinion if necessary. Obviously you have something causing these symptoms, and frankly the IBS diagnosis is made when they don't want to say "we have no clue".
Posted 3/7/2015 9:37 PM (GMT 0)
My crohn's is in remission finally after 20 some years, but I am now suffering with IBS mainly constipation occasionally D (usually during my monthly cycle) so IBS is very real for sure but I do agree that I think sloppy and lack of proper testing does make it much more easier for docs to over-dx patients with IBS when they have tummy issues.
Posted 3/7/2015 10:33 PM (GMT 0)
I am stumped as to why you are seeing a general surgeon for complaints about bowel pain, diarrhea, etc. The lump is your saving grace, and it is perhaps a surgical problem, but really, WHY ARE YOU NOT UNDER THE CARE OF A GASTROENTEROLOGIST. Ugh.
Posted 3/7/2015 10:37 PM (GMT 0)
I have wondered about endometriosis too. I don't think that would explain everything though. The weight loss, the joint pain, nausea, etc. I am insanely fertile so I don't think I'd have conceived 3 children so effortlessly if I had endometriosis that caused this much pain.

I know something is there and I'm confident the CT scan will pick up whatever it is.

I have no idea why she referred me to a general surgeon. When she said she thought my symptoms were related to IBD I assumed she was sending me to a GI. I do know she was concerned about the waiting list and sent me to someone who would be able to see me the soonest. Our health care is a mess.
Posted 3/7/2015 11:14 PM (GMT 0)
I did a quick search on endometriosis and I'm just not sure that's it. A CT scan would show scar tissue?

I'm postpartum and have not had a return of my menses yet. But when I was menstruating, I didn't have irregular cycles. They were like clock work. I didn't cramp badly. I did however have horrible diarrhea the day before my cycle started. But that is the only thing that I remember being worse.
Posted 3/8/2015 2:24 AM (GMT 0)
Just want to put out there that many women that don't have any bowel issues can also be prone to having diarhhea or constipation during their menstrual cycle, it's quite common actually.
Posted 3/8/2015 2:36 AM (GMT 0)
I realize that. I'm just saying that in regards to endometriosis, my symptoms don't really get worse when I menstruate. I am in no way suggesting I only have diarrhea the day before my period.
Posted 3/8/2015 2:43 AM (GMT 0)
In fact, I recall a time when I used to consider the pre - menstrual diarrhea a good thing. Lol. I had such an easy time with my cycle that it was my only sign that I was about to start a new cycle. I don't think I could distinguish between my normal D and menstruation D any more.

I just think the lack of pelvic cramps and lack of worsening symptoms at menstruation would make endometriosis less likely.
Posted 3/8/2015 6:48 PM (GMT 0)
I was mentioning endo. as a possibility, which I agree, that doesn't sound like your problem. Not everyone with endometriosis has the classic symptoms though. I was very regular period-wise, but had light periods prior to my hysterectomy due to hormonal issues. Did you have a vaginal delivery or a C-section? Did you have the lump prior to pregnancy or has anyone thought it could be related to your recent pregnancy?

I wonder if someone in your doctor's office could have made an error in your referral. Maybe someone with a surgical need got sent to a GI by mistake???

Regardless, the CT scan will hopefully show up something.
Posted 3/8/2015 9:08 PM (GMT 0)

pb4 said...
My crohn's is in remission finally after 20 some years, but I am now suffering with IBS mainly constipation occasionally D (usually during my monthly cycle) so IBS is very real for sure but I do agree that I think sloppy and lack of proper testing does make it much more easier for docs to over-dx patients with IBS when they have tummy issues.

Remission doesn't mean that we still don't have some symptoms. So I would be weary even then to call it IBS, especially knowing that I have Crohn's. Even in remission I don't think we are ever 100% normal.

I think IBS is real, but very overly diagnosed. I also think it can mean things like food intolerance/allergy and again something they can just put a lazy sticker on. I went undiagnosed for 10 years because it was just "IBS". I tend to wonder if my disease would have been better controlled if found earlier and not just dismissed. I think this is all too common of a problem for us.
Posted 3/8/2015 10:14 PM (GMT 0)
I had 3 vaginal deliveries. I've never had surgery. I didn't have the lump prior to my last pregnancy (had a complete physical prior to conception about a year and a half ago) but the area was sore to press. I do remember that physical and my doc figured it must've been a cyst then. I had my first prenatal ultrasound shortly after that physical though and there weren't any cysts. I also had an ultrasound this past October to rule out cysts or appendicitis. No abnormalities found.

The lump is newish - after pregnancy - but I've been experiencing pain there for years. Off and on. Varies in intensity. It almost always hurts to put pressure on it for I'd say the last 3 years at least but I've had a few bouts were it is painful for a few days to a month without having to apply pressure.

And I went to the hospital once (prior to my last pregnancy) for mind blowing pain. They ruled out appendicitis and sent me home. Then it happened again last fall, which is what led me to where I am with testing now. The lump was noticeable since that last bout in the fall.
Posted 3/8/2015 10:19 PM (GMT 0)
Even though zero evidence was found for a cyst when I went to the ER with pain a couple of years ago, they did brush it off as a cyst when they located my appendix and determined that it was healthy.
Posted 3/8/2015 10:35 PM (GMT 0)
I agree with the IBS theory as being more then just a spastic colon for no reason. I believe that IBS in my case is being thrown way to darn soon. Way too soon. And that if this is in fact IBS, then there must be something I'm reacting too. Food/chemical/endless possibilities.

I cook from scratch - zero processed food. Have cooked like this for years. I'm dairy free, but I do enjoy some homemade yogurt on occasion. I removed chemicals from my home over a year ago. And nothing has changed with my bowel habits. It's gotten worse :/

So I am going to eliminate gluten. There's nothing else I can do. Maybe gluten is my problem.
Posted 3/8/2015 10:38 PM (GMT 0)
I don't even buy my almond milk - I make it. I really don't have much lifestyle wise to change. Just the gluten.
Posted 3/11/2015 3:13 PM (GMT 0)
I'm confident that I'm definitely only dealing with IBS and nothing CD related, I'm super constipated, still having BM's but they are getting harder and harder to pass and my stools show that I'm constipated and I don't feel the same as when my CD was flaring so maybe in many cases they throw IBS DX around but in my case I think my GI is right on spot with that DX especially since my current symptoms hardly relate to the ones I had while flaring.

My sister and my daughter both have IBS as well.
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