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Apparently I am confusing!

So here's a little update on me:
- Colonscopy in April 2011 - found inflammation. Biopsy done - granuloma in terminal ileum.
- Pill Cam (VCE) July - found nothing else.

My symptoms are: pain in right side goes from being lower quad to middle at my waist. Pain at left upper quad that comes and goes. Pain is stabbing and sharp to both areas. Do not want to eat as pain comes about 70% after eating. 20lbs weight loss from May.

Why am I confusing? Well my at my GI appt yesterday he said - we still don't know what is going on with you. (In May he said most likely CD). My symptoms are not D all the time. I actually need to take a laxative because I won't go for days and then it feels like it bursts out of me. The stool is soft and pencil thin and feels like it is going through a wall (if that makes sense). It is the worst pain because it goes kinda in spurts. Like it needs to pop through the wall, like my bowel is in a knot. Sorry if TMI.

So he doesn't want to start me on any crohn's meds because he isn't 100% sure it's CD. Although, a granuloma usually means CD or acute infection (and I am still having symptoms so I guess it's not an infection). I suggested to him that we try a small bowel follow through and he said you have had one, I am looking at the results here. I said that that one was from 2003 (when they diagnosed me with IBS). He was like ohhhh, yes we need to do that.

So now, I am going for a SBFT and still taking a laxative.

Does anyone else with CD get constipation and these types of symtoms?

Thanks for reading. :heart: :ysmile:
 
Hi, sorry to hear you haven't had any luck on a diagnosis...I usually have left quad pain constantly form dull ache to severe depending on if not in a flare or in a flare...sometimes I am bloated & alot of the time I feel like I have a BAD Hangover, without enjoying the drinking that goes with it...I do not have any issues with constipation...mine is the complete opposite....constant D all the time...but a few of my friends that have crohns has pain on right & constipation all the time.. be persistent...it can take a long time for a diagnosis..Oh & when I first went to my GI he said I definitely didn't have crohns..I wasn't presenting as crohns, etc...he kept telling me I was most likely celiac...and he was surprised when my colonoscopy & biopsies were positive for crohns...which sucked, cause I might've had a better handle on the celiac diagnosis! Good luck :)
 
Hi there Denise :)

Firstly I hope the sbft gives you enough info to find out what's actually causing all your pain.

Regarding constipation - before I had all these bowel and extra intestinal symptoms over the last year I would mainly be constipated (I would go to the toilet lots of times through the day but mostly it would be like a few 'sheep' droppings, mucous and a ridiculous amount of gas, - sorry tmi! and I would occasionally have to take laxatives cos I felt 'full up') have occasional stabby/shooting pains and random diarrhoea and then during my period I would get diarrhoea. Since starting on Remicade I have been more constipated with occasional diarrhoea (ranging from full on diarrhoea to soft and thin stools the thickness of two pencils).

Regarding the pill cam not finding anything, well I wonder (although I'm highly likely to be wrong!) could it be possible to have a fistula that the pill cam didn't show and that is what is causing the pain and the pencil thin stools?

I hope they get you out of pain soon :hug:

Soybean xx
 
Oh my gosh! That sound like me except I don't really get the sheep droppings but I would say it's like that but soft stool not hard. I get the same way with my period as well and I stop taking laxative then. My GI told me that I should always take my laxative when I asked him.

I didn't ask him about a fistula or stricture. But I guess it is possible that the pill cam missed it. I don't know how far it got with taking the pictures.

Thanks for reading and replying!
 
Thanks AbdoAlien.

Yes he thought that I had celiacs at first too. But blood work said otherwise. I would have much rather had the celiacs as well. I get bloated as well and feel that hangover effect too. I don't drink anymore since that is horrible for me. I get tons of pain and am constantly running to bathroom with false urges.
 

DustyKat

Super Moderator
My kids never had diarrhoea prior to diagnosis and my daughter tended to constipation as well. Their CD is in the same location as yours.

My son had the lower right quadrant and navel pain as well which is very typical of ileal CD. The left upper quadrant pain could be pancreatic as this is also and extra intestinal manifestation of Crohn's and something my daughter suffered with.

To be honest, your pain, symptoms and granuloma results sound like Crohn's more than anything else. Hopefully the doc will be willing to label you soon and then you can get some relief.

Good luck!
Dusty. xxx
 
I hear ya on the drinking thing, although when I do I have to adjust my drink...I started a gluten-free, sugar free, lactose free diet a year ago Sept...really sucked at first & I do "cheat" every once in a while, but overall it seems to minimize my flares..so for my drinking, I used to drink white russians, but now I make my own sugar free kahlua, use vodka & unsweetened almond milk...no quite the true thing, but does the trick when I do have some drinks (which is Very limited!!)...but everyone is different & everything affects everyone differently... hopefully you don't have a stricture or fistula...good luck to you!!!!
 
Why am I confusing? Well my at my GI appt yesterday he said - we still don't know what is going on with you. (In May he said most likely CD). My symptoms are not D all the time. I actually need to take a laxative because I won't go for days and then it feels like it bursts out of me. The stool is soft and pencil thin and feels like it is going through a wall (if that makes sense). It is the worst pain because it goes kinda in spurts. Like it needs to pop through the wall, like my bowel is in a knot. Sorry if TMI.
Denise - before i underwent hemi colectomy many years ago my gut would often behave exactly how you have described.
I would have a day of 6-10 BM's all loose/very loose (hardly ever with blood),next day nothing,next day 'pencil thin' - painful - spurty porridge like motion(3-5 times).

Trying to explain that to Dr's was hopeless - they only ever focused on 'D' & blood.

When i underwent the op my gut was knotted,stuck together & perforated.
I lost (approx) 30ins small bowel & right side of large.The pathology report stated the worst part was my small bowel (severe ulceration,3 perferations).

I've read many times since that active Crohn's in the small bowel won't always give the patient 'D'.

I hope i have not worried you by posting this - i hope you never get to the stage i got to.Wish you well.
 
Denise - before i underwent hemi colectomy many years ago my gut would often behave exactly how you have described.
I would have a day of 6-10 BM's all loose/very loose (hardly ever with blood),next day nothing,next day 'pencil thin' - painful - spurty porridge like motion(3-5 times).

.
I must add this went on for years before i was i ever taken serious.
By then it was to late!!

Hindsight.......if only!
 
@AbdoAlien - I have started lactolose free as well. I use to love paralyzers which is made with milk too. *sigh*

@stratford - you aren't worrying me at all. I like to have information and be able to discuss it with the GI. I have tried to explain how my bowels work to him and it like oh, you aren't going to bathroom 20 times a day so it may not be CD. I had a doc in emergency tell me I had gastro or "stomach flu". Seriously - I need morphine shot for the stomach flu. Argh! I hope we figure something out soon. Did you ever have a small bowel follow through (barium swallow) prior to your surgery??

@dusty - thanks for your input and support.

:heart:
 
Hi Denise your symptoms sound similar to the way I was before the surgery. I would suffer more constipation then a bout of loose BM and pre surgery they were pencil thin. Diarrhea was never a big issue for me and still isn't post surgery. I also had RLQ pain and pain aroung my belly button but not on the left side at all. You def sound like you need a small bowel series. Are you with a GI or just your GP, what are your bloods like?
 
@ Archie - I have a GI. My last set of bloodwork was in August and everything was fine then. The last time I had a big flare that I had to go to the ER my white blood cell count was up. They unfortunately did not draw a C reactive protein. I am going for a small bowel follow through sometime soon. GI told me this week but it will probably be next week.

I need the laxative to go so, who knows what happening inside.

Thanks for your input. It means a lot to me to have all of you respond and help me out.
 

DustyKat

Super Moderator
oh, you aren't going to bathroom 20 times a day so it may not be CD
That is rubbish. Your doc needs to understand that the higher you go in the bowel there is every likelihood that you won't have diarrhoea or blood as a symptom. Large bowel involvement very likely, small bowel involvement only much less likely.

Dusty. xxx
 
@Dusty - I totally agree and my inflammation and granuloma (found on biopsy) was in my ileum. I was doing some research and I found that CD involving the small bowel may present with constipation.

I do believe that I most likely have CD (even though I wish it was something else). I get joint pain when I feel the most sick. Like every joint in body hurts to the point that I feel like my blankets and clothes are hurting me. My fingers hurt, wrists, elbows - everything!

It was more the emergency room doc telling me that I can't possibly have CD. This was because I went in with what I thougth was an obstruction but I was full of poop despite having what I thought where BMs. I guess I was only emptying the sigmoid colon. But I got a fever there too. So that can't be IBS. They had to poke me for blood cultures.

I am just so frustrated because I was accepting that I had CD just to be told yesterday that "we still don't know what's going on with you" when at last visit (one month ago) you wanted to put me on asacol but thought you would do bloodwork first.

*sigh* Doctors....
 
I seriously agree with DustyKat. If your doctors aren't taking you seriously, it might be time to look for a different doctor. CD can present with MANY symptoms, D is just one. UC almost always presents with D because it involves the colon only. My initial diagnosis with with terrible D. However, I suffered from "IBS" for several years. In fact, what sent me over the edge was the doctor gave me fiber that I was to take several times a day to get things moving. This irritated my bowel so much that I was in great pain, bled and had horrible diarrhea.

To check for blood in your stool, they need to do an occult blood. This finds blood that is hidden because it is essentially digested by your body as it goes through. Being full of poop can be due to constipation - but if you have a stricture, it will back up behind the stricture.

I recently went through this (again). I have had "constipation" for several years and I finally found doctor who listens to me. He does know that Crohn's can have other symptoms. We talked about the stricture and he explained that it can be a tiny change in the size of the bowel, and still cause problems. It can be a place that doesn't expand and relax properly, and still cause problems. It doesn't have to be a super narrow spot to cause problems!!!

I hope they are able to image your problem in the SBFT. Don't give up and don't let the doctors tell you that there is nothing wrong when you know there is. There is a LOT of bowel in there and they can't always see everything. That doesn't mean there is nothing there!!
 
Called my GI's office today because I still haven't heard about my SBFT appt. They said it was on the to do list for tomorrow. That is the last time I go for my appt at the hospital. If I would have had the appt at his office, it would have been booked that day.

Today I am having a lot of pain. Lots of gas, bloating, and a dull ache at my LUQ, like right under my ribs with occassional pain around my bellybutton.

I am feeling so frustrated today and grumpy. I don't understand how he said I most likely have crohn's in August and wanted to start me on Asacol then decided to do bloodwork and then at last appt say I don't know if I want to do any Crohn's meds right now. That's why I suggested the SBFT (he was looking at my 2003 results - when I was dx with IBS).

I don't know what to do anymore.
 

DustyKat

Super Moderator
As hard as it is Denise try to keep pushing...

Perhaps start with another run of bloods...CBC, CMP, CRP, ESR, Amylase, Lipase, B12, Folate, Iron Stores and Vit D.

When you next ring them maybe say something like...

I know it is difficult for you to understand but I can't continue to live in this limbo. I have daily pain and weight loss and can barely eat without having to rush to the toilet. It is affecting my quality of life and something needs to be done about it now because it has been going on for...(? how long). If the doctor doesn't wish to deal with me then so be it but at least have the decency to refer me on to someone else, I can't put up with this anymore.

:hang: Hun, we are with you every step of the way.

Dusty. :hug:
 
Thanks Dusty.

My symptoms have been going on since probably 2002. I was told IBS so I chalked it all up to IBS for the past 9 years.

In this last year (after the birth of my second boy) I started to have more pain, more cramping, feeling faint when going to the bathroom, and sometimes blood. That is why they got the scope done in April - which found the granuloma. A granuloma means either crohn's disease or acute infection. Don't think I would still have infection now. I don't know why he doesn't want to label it CD. I am going to ask him all this at my next appt.
 
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