Awaiting colonoscopy for diagnosis -- question?

[happyballerina]

Hi all,

:sign0144:

I'm a new member! I have been lurking on the forum for a couple weeks, ever since first visiting my GI, but decided to join now as I have some questions.

Just real quick, I know I should post in the "Your Story" section of the forum, but I would like to do that after I get the results of my colonoscopy, if that would be alright?

I put this in the Diet and Fitness section because it is a question about eating certain things so I figured it would belong here, but I apologize in advance if this is the wrong place for it :redface:

Anyway, my colonoscopy is on May 2, so in two weeks. I have been in a lot of pain lately and it's just been getting worse. Strangely, I haven't had diarrhea lately, but I have been insanely bloated and have been having a lot of stomach pain and headaches, too, which I don't know if they're related, but...

I feel like I want to eat only foods that should make me feel better -- like liquids, low fiber, etc. All the things I read about here. The thing is, I am afraid to do that before my colonoscopy. Maybe it sounds silly, but I don't want to jeopardize my diagnosis. I'm not sure how to explain it, does it make sense though?

I would appreciate any advice or really anything you have to offer -- I am in a bad situation right now where I feel like I can't eat but I am scared to do a liquid diet in the case that it makes me difficult to diagnose. :confused2:

 

[Crohn's 35]

Hi there welcome! Can you tell me exactly where your pain is? Is is localized and if you press on your tummy does it hurt? I am a bit confused (not hard lol) as to why you dont want to eat or drink liquids or low fiber. Food doesnt make your the disease worse or better, just some people cant tolerate certain foods or gassy foods. You have to eat, and if you dont feel like eating drink Ensure or Carnation breakfast or a smoothie, either way it wont change the outcome of the colonoscopy. Seeds I think i would avoid, incase they get stuck. Dont worry too much. Do you have crohns or Colitis?

 

[happyballerina]

I'm so sorry my post was confusing, I guess I am a bit frazzled myself lately...

I don't know if I have CD or UC yet. I went to the GI a couple weeks ago and my colonoscopy is in about two weeks. He thinks it is either CD or UC, which is why he ordered the exam. My symptoms seem to match CD more than UC:
Blood in stools (confirmed with FOBT)
Diarrhea (although haven't had it for about a week now)
A lot of bloating (especially right this moment, I look preggers!!)
Pain -- right now, my right hand side hurts, it's like a dull radiating pain in the lower right and side; when I exercise, it really hurts like a stabbing pain underneath my right ribs (I first noticed it happening only when I went out for my walks, then a few days ago it hurt when I was just doing nothing, and on Friday at ballet it hurt so badly that I ended up going home early); and I have overall abdominal pain, a lot of the time in my lower abdomen especially when going to the bathroom, or sometimes (like the last few days), just constant discomfort/pain in a nonspecific area of the abdomen
My eyes have been irritated and I have been getting headaches (not normal for me; not sure if this is related at all)
I also have a lot of joint pain (mostly in my hips, a while ago it was very bad in my back), and I was surprised to find out a short while ago that this is actually related to Crohn's
I also know my potassium was low, I guess because of the D?
As far as if it hurts when I press on my stomach, it does -- not a stabbing or sharp pain, but it just feels "tender", I guess would be the best word. My insides just feel swollen :-/

I know from experience that I feel good when I don't eat so much. During the weekdays when I am busy I hardly eat and I feel great, but the weekends are the worst because I find myself eating more and then being in pain.

So, I know if I don't eat much I will feel a lot better, and I don't really have an appetite anyway. But I have been forcing myself to eat because I am scared that eating less or eating foods that are good for Crohn's (or rather, avoiding the bad food) will heal me before I can be diagnosed. I want to feel better, but more so I want to find the cause so that I can get proper treatment.

You said that it wouldn't impact the outcome of the colonoscopy, so would it be safe for me in that sense to eat the way it makes me feel better?

I guess I just don't understand how it wouldn't affect the colonoscopy. Wouldn't avoiding bad foods reduce inflammation?

Thank you so much and again I apologize for not being very clear; I am so new to all of this and I am still not sure what if it really is Crohn's, but all I know it that I am not feeling well and it's taking its toll on me!

By the way, if it makes any difference, I am an 18 year old female, and a pre-professional ballet dancer. Obviously the bloating not only hurts and is uncomfortable, but it's also making it very difficult to dance and feel comfortable in my leotard

 

[Crohn's 35]

That explains more. Like I say food doesnt make it worse or better. Not the inflammtion, when we are active the foods can hurt no matter what we eat. I feel that way and have had Crohns for over 20 years, and symptoms more. I dont know the typical pains for colitis, but most people do bleed..from my sister who has crohns colitis. My brother has UC. I dot not bleed but alot of people who do have Crohns do. We are all different, even in the foods we eat. Just avoid dairy ,eggs and turkey they are bloaters, and that will just cause you more pain. Crohns doesnt have a cure, and if you do have crohns it will show up, sooner or later, NOT all tests confirm it and some people like me it took over a year. Ballet can be stressful and active, this must be so uncomfortable for you. Your scope is just around the corner, and you should know if they find anything and they take biopsies too, that takes longer. :hang: keep us posted!

 

[happyballerina]

Pen, thank you so much, I appreciate your quick replies and they are very helpful!

As an aside, I notice you are from Thunder Bay -- a very good friend of mine is originally from that area

I feel much less anxious now knowing that I can eat in a way that makes me comfortable without it directly delaying my diagnosis.

I do hope it doesn't take them quite so long to diagnose me! Does a colonoscopy usually show Crohn's clearly? Or is it very common to run other tests after? I know my GI said he will take some biopsies while he's in there just to check.

There are foods I know make me feel bad -- luna bars, for example. Or maybe it's the black coffee I drink when I eat them. I'll be running to the bathroom before I'm half finished eating it!

 

[xJillx]

Hi there! I find a colonoscopy to be the most effective test (over imaging) because the entire large bowel is seen and biopsies can be taken. However, results can come back inconclusive. As Pen said, it can take several tests to get a diagnosis. Other tests would likely include investigating the small bowel for disease through an endoscopy or pill cam and imagine testing like a lower bowel series or CT scan. It can be a long and tiresome process to get an official diagnosis. But perhaps your colonoscopy will be telling enough and additional testing won't be needed! Hang in there!

 

[happyballerina]

I definitely hope it will give them enough information! I'd been reading other people's diagnosis stories and I noticed that it does take many people a very long time, but it seems that this is only because they go through several tests and only then they eventually get a colonoscopy ordered...so I am hoping that the delay in diagnosis is in large part due to using other tests before colonoscopy and that because I am doing that straight away it will be quicker. Wishful thinking? Haha!

Today I had tea, coffee with milk, and a plum; then I had 1/2 c of kefir and a few grapes; for lunch I had a cup-a-soup. And, I have an apple to eat as a snack later.

So far, I feel really good. No new bloating I think -- it seems like it's just residual bloating from last night. And I've been having pain but only when using the bathroom.

It really does feel better when I eat these types of food. We have Passover dinner tonight and I do want to stick to this style of eating; it'll be a bit of a challenge I guess, but I'll just keep thinking about how bad I'll feel afterward if I eat something bad.

 

[George.murphy]

before i had my colonoscopy my doctor advised that i only eat light coloured jelly the day before and mayb drink black coffee with no sugar, also he gave me this laxative tablets to take...i can safely say it was the worst day of my life theres no point denying it but it was defo for the greater good coz it finally got me diagnosed, as for the operation itself it is surreal and painful but passed in what seems like 15 mins when it is closer to an hour and a half

i wish u the best of luck for ur operation and the prep, and im sorry to hear about all the pain it is literally crippling i know :/

 

[itsMeFred]

I am a complete newbie, so take my suggestion with a huge grain of salt. Undoubtedly there are those here who've been-there/done-that far longer than I!!

That said, I'm newly diagnosed. Or rather probably will be once I'm scoped. My GI is 98% sure, but wants confirmation.
I would HIGHLY recommend you do a search on the Specific Carb Diet.

I've been low-carb, more or less, for about a year or so. Going by my symptoms, I've had this for at least a couple of years. But it hasn't really bothered me until I had several high-carb weekends this spring that completely sent my gut into a tailspin (sugar and grain products) and thought I had appendicitis.
No, turns out, I most likely have Crohn's with ileitus and colitis.
Once I got out of the hospital, I went back to low-carb "soft" foods (since I never hurt when I'm low-carbing) and things have completely settled down again.

And when I started researching, it turns out that my low-carb diet is essentially the SCD (though I can have honey on SCD and can't have dairy).

I find it a very interesting coincidence that my low carb diet kept me virtually symptom free for at least a year, is also the diet that a lot of people with Crohn's a colitis have had success with.

Anyway, it's enough of a coincidence, I would suggest you do some checking into it!

 

[happyballerina]

That is interesting, and I have read a bit about the SCD diet. It sounds very restrictive! Although if it comes down to the choice between SCD and prednisone, I imagine I will choose the SCD with little hesitation!

When are you getting scoped?

Mine is tomorrow, I start my prep in an hour and a half! I really hope they find something and that they can diagnose me because I read a lot of discouraging stories here about undiagnosed people. And I really need some type of treatment because as you know the pain is bad!

I have a dietitian appointment on Thursday, so hopefully I will know by then if I have CD or not and if I do then we can start talking about nutritional intervention and building a good meal plan to help me get to my goals and minimize any pain.

Good luck to you

 

[StarGirrrrl]

Good luck with your prep, is always the worst part!!

Afraid I am one of many for whom the colonoscopy did not lead to a diagnosis, I know it's hard not to get your hopes up though If it is not UC but CD it isn't limited to the large bowel like UC so you may need more testing.
Hopefully you will have a happy outcome.

 

[happyballerina]

You know what, I can handle a few additional tests -- of course I would prefer knowing right after the colonoscopy tomorrow. I need to be realistic though and if they say they need to run more tests to confirm CD or whatnot then that sucks but it's ok -- I know i will have to wait for the biopsy results anyway.

It's NEVER getting a diagnosis that scares me. The idea that they'll say, "Well, we didn't find anything, so you MUST be ok. Go on home now."

 

[StarGirrrrl]

Of course that is the hardest part of being undiagnosed, the worst fear many of us face :hug:

Do check out our Undiagnosed club for support, feel free to check in after your scope!

http://www.crohnsforum.com/showthread.php?t=13113

 

[happyballerina]

I've been lurking around in that thread, reading; it's what made me realize how many members here are undiagnosed! It's crazy :O

I don't think I can welcome myself into that club just yet, as I've not so much gone Undiagnosed -- you see, this is my first procedure. I went to my GP and she referred me to a GI and he immediately sent for a colonoscopy (he said normally he wouldn't immediately ask to do one, but because of my bleeding and symptoms he wants to go straight to the colonoscopy so he can see if i have CD or UC). It was also my choice to delay the wait for the colonoscopy by about a month, because I wanted to finish up school before doing it.

So I really have no rights to complain yet, as I am very new to this. I haven't been pushed aside by doctors yet, but it is a big fear of mine! I feel so much for all you guys that HAVE been to the doctor for a very long time and have been prodded and poked to no avail.

I guess i should consider myself lucky so far since I am not diagnosed but nor am I undiagnosed, in the most familiar sense of that word here on the forum. If that makes any sense. Haha.

Thanks for the kind words Star!

 

[itsMeFred]

That is interesting, and I have read a bit about the SCD diet. It sounds very restrictive! Although if it comes down to the choice between SCD and prednisone, I imagine I will choose the SCD with little hesitation!

When are you getting scoped?

Apparently my CT showed my colon as entirely too inflamed to schedule a scope, yet. The doc wants to wait for it to settle down so he doesn't risk perforation. So probably not for another week or two. I have an appt. tomorrow. We'll see what we see, I guess.
I hope yours goes well today and is irrefutable!

And I really need some type of treatment because as you know the pain is bad!

That's just it. I don't have any pain. And my bathroom trips, while still very soft, aren't frequent or urgent.

I had a terrible flare the same week I was grabbing Easter candy from every dish, ate pizza and bread several times (personally, I don't think it was a coincidence, but I realize anecdotal evidence does not make science) and I wound up in the hospital with dehydration, a raging bacterial infection and this stabbing pain in my side that I thought was appendicitis but turned out to be both my colon and ilium.

Once I got out of the hospital, and off their "soft," but starchy diet, and back on low-carb, I have been pain-free. And my d improved...

 

[happyballerina]

That's certainly something worth investigating! I think, for now -- since we don't have any scientific evidence that says "Diet XXX" works -- it's more of a 'do what feels good for you' type of deal. In fact, even if there was some special diet that would be proven to help IBD patients, I'm sure there would be variation in the diet between different people.

My major is nutrition and I am studying to become a registered dietitian. We'll see where things go, but something like THIS is definitely something I would consider doing my thesis research on!

---

Leaving for the colonoscopy in about an hour. Wish me luck

 

[Lisa]

Good luck!

 

[misterquin]

Ive had very similar symptoms to yours- the bloating without diarrhea. I was also, strangely enough, losing weight very quickly. I'd keep an eye on that.

As for what you should eat, stay away from the obvious- coarse foods, greasy foods, sugary foods, and refined stuff. When I was really bloated, I found that I was eating a lot of bread at the time and was exacerbating the whole time. Maybe try and eliminate white bread and see if your bloating improves. Definitely stick with ensures/ carnation as others have suggested. Many people's ultimate safe food is boiled chicken and rice, give that a try perhaps.

And most importantly, if your symptoms get worse before your scope and the pain gets intolerable, head to the ER. This is actually what happened before my diagnosis and scope. Things will start looking up for you! After you start treatment and get on the proper meds, you'll see drastic improvements.

 

[happyballerina]

I actually did have diarrhea, and just as you described I had TERRIBLE pain on Wednesday and Thursday before my scope -- which was today. I didn't go to the ER, I just waited it out at home.

In fact, I just got home from my colonoscopy and it looks like I'm all clean! So no diagnosis! He took biopsies to check for microscopic inflammation and he ordered blood labs to test for Celiac, but as of yet I am undiagnosed.

Happy and upset at the same time, for obvious reasons I guess!

 

[Entchen]

Hi HB: Sorry you don't have a diagnosis yet (but as you say, good that it doesn't appear to be Crohn's/UC...although it's a tricky disease and likes to hide, blargh). The bleeding that you saw and that showed up on the FOBT could be from internal hemorrhoids. You'd wonder why someone at 18 would be getting those, but it can happen, especially if you are having lots of D from other issues. Hope you find out the cause soon and then kick it to the curb!

 

[happyballerina]

He did say I had internal hemorrhoids, but he said they were non-bleeding. I think he said there were also hemorrhoids around the anus which could have caused the bleeding. Still wouldn't explain the pair and D though :-/

When my GP did the rectal exam she said she felt a small hemorrhoid but that it wasn't bleeding.

Hopefully I will get this sorted out soon!

What causes hemorrhoids, anyway?

 

[StarGirrrrl]

Sorry you didn't get the outcome you wanted :hug:

There is always the biopsy results and if there is one good side it's UC checked off the list. CD can be anywhere from mouth to anus so don't lose hope that you will get a diagnosis

 

[bruscar]

Good luck today, probably done hours ago but anyway, hope it went well.

And Welcome of course !!

 

[Nisso]

Just had a colonoskopi, and unlike (perhaps) everyone else the emptying was a delight. Didnt eat much to days prior, NO big meal, and was not eating anything from lunch the before. Almost no D, only 2 bowel movements during the emptying/lax prosess. And the best of all - pain free for 3 full days - Thank you lord!
The colo went faster and smoother then i thought, (first time beeing awake). Had some sort of valium-ich drug, but was fully awake.

Hope you had the same experience, keeping positive and trying to think of something else helps a lot. This is all to make you better!