does anyone have Crohn's in the rectum?

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isergodur
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Date Joined Jan 2009
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   Posted 6/16/2009 8:04 AM (GMT -6)   
So my doc is now thinking that I have UC but my old docs insists that I have CD..
I have bad Disease in the Rectum and now I was reading that having it in the rectum is really rare for CD people but more common with UC.

So I was wondering if anyone with CD has the disease in the Rectum the same place I have it.
24 year old female
Diagnosed with Crohn's disease in December 2008..
Medication - Asacol, Remicade, Entocort, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~


meshice
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Date Joined Jan 2003
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   Posted 6/16/2009 9:25 AM (GMT -6)   

My mom does.  She has a very tiny rectal opening and it stayed inflamed most of the time - sometimes it would abscess and drain. She was going to the bathroom (to poop) in excess of 15-30 times a day and it only being a small amount coming out each time with extreme pain and burning.  Her stool would have to become like water to come out and they were unable to do a good colonoscopy because of the narrowing going in.  One time they were able to use something they use on babies and actually do it.  She also had a mass of fistulas in her intestines.  They removed this mass and did a colostomy.  At first they thought they could reconnect things and the colostomy be temporary.  But due to the rectal issues they were afraid things would bust if they reversed the colostomy.  So, she has had a permanent colostomy for about 3 months now and is doing really good.


"We can't beat this disease, YET, but we can't let it beat us!"
Mandy

"Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34


Nanners
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Date Joined Apr 2005
Total Posts : 14994
   Posted 6/16/2009 10:21 AM (GMT -6)   
I may be mistaken, but I believe PB4 has CD in her rectum and colon. I do know she has Crohns Colitis, so I do think you can have CD there too, as it can be from mouth to anus.
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

HabsHockeyFan
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Date Joined Jan 2006
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   Posted 6/16/2009 10:54 AM (GMT -6)   
My original diagnosis was at the terminal ileum (18" resection).  When I fell out of a long remission, I discovered that the majority of my issues are rectal/anal now.

Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


pb4
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Date Joined Feb 2004
Total Posts : 17877
   Posted 6/16/2009 11:36 AM (GMT -6)   
Nanners is correct, I have crohn's colitis which simply means crohn's affecting the colon and for me it has often affected my rectom as well (proctitis), this can be very common for those that have large bowel involvement with their CD (crohn's colitis) or there are many that only have mainly their rectom affected but can also have other areas at the same time affected. When I first became sick it was affecting my anus (which is where my disease actually started) my rectom, colon and TI all at the same time and it remained that way for the first couple of yrs (I was quite a mess), since it cleared up in the TI it has stayed constant in my colon and anus, comes and goes in my rectom and I've had CD for 18 yrs straight now with no full remission.

Do not be fooled, chances are more like you have CD affecting your rectom and not a misDX of it being UC instead...regardless where the inflammation is affecting the pattern will be the same, patchy and usually deeper inflammation with CD, but with UC the entire are will be inflammed but on the surface of the lining only.

Thing is, the treatment is the same for CD affecting the colon/rectom as it is for UC, if you're having rectal inflammation you need to get on rectal meds ASAP to help nip it in the bud, cortifoam is the only rectal med I use, since none of the others ever had any affect on me and I would just get worse and worse making it harder to clear up.

And in the future as soon as you suspect rectal involvement (usually discomfort, incomplete evacuation feeling, excess mucus and/or blood are all good indications of rectal inflammation/disease, then you need to get back on rectal meds right away. Symptoms for UC proctitis and CD proctitis are identical as is the treatment.

:)


My bum is broken....there's a big crack down the middle of it! LOL :)


daisyrambler
Regular Member


Date Joined Jan 2009
Total Posts : 126
   Posted 6/16/2009 12:36 PM (GMT -6)   
me too .... i have crohn's colitis .. i have it in my nose and mouth and all the way to my rectom .....
> 27 year old female < 
> I am pregnant due mid february <
 > Diagonsed with Crohns disease in 2000 <
 > Diagonsed with Crohn's Colitis in 2009 < 
 > Medication - pentasa(4000mg) and prenatal vitamins <
 > I thank the Lord every day for my amazing husband and wonderful family <


ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 6/16/2009 2:58 PM (GMT -6)   
Unfortunately, yes.  It was found at my last colonoscopy in April '09.  Prior to that, my Crohns was staying in the ileum area, it has now spread upwards to my stomach and downwards to my rectum.  Boy has it wrecked havoc with my bowels.  As if Crohn's by itself doesn't do that.

want_2_be_well
Regular Member


Date Joined Sep 2006
Total Posts : 177
   Posted 6/16/2009 4:03 PM (GMT -6)   
I have it in the TI and the old bum. I went from a UC to a CD diagnosis. Took 3 dr's to get 2 with the same diagnosis.
want_2_be_well
33 year old Female
Diagnosed with CD 2006, had suffered long before 2006.
CD Meds: Remicade every 7 weeks & Imuran 50 mg,
Also have seasonal allergies, milk allergy, and asthma.
  
 


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 6/16/2009 5:27 PM (GMT -6)   

I have crohn's colitis too - affecting all of my bowel and especially bad in my rectum and anus. it has wreaked havoc and now I have a fissure, fistula and abscess that refuse to go away despite multiple surgeries. :(

I didn't realise just how bad my case was because I was being 'treated' by a negligent GI. ONly on meetin my IBD GI was i told just how bad things really are.


CrazyHarry
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Date Joined Mar 2006
Total Posts : 1034
   Posted 6/16/2009 6:00 PM (GMT -6)   
i got some there. it is a total pain in the arse. ha ha ha ha ha ha.

surgery removed the sigmoid colon but they left the rectum for me (thank God). now i just have an abscess that wont heal going on 3 years now which is exacerbated by the hot weather of summer. ugh.

i use proctocream and suppositories on occasion.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


*Phoebe*
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Date Joined Sep 2005
Total Posts : 769
   Posted 6/16/2009 6:28 PM (GMT -6)   

Hi crazyharry, that really sucks. Having crohn’s in the rectum is embarrassing and so painful. I have run out of painkillers and am set to see my colo surgeon tomorrow, not knowing how I am going to get through today at work!

 

You say you’ve had an abscess for 3 years….. have you ever been offered setons or a drain for it? I currently have a mushroom drain in mine after the setons didn’t work well enough. But it is still draining nearly a month on, so I see the surgeon tomorrow and hopefully he can give me some answers because it is getting increasingly painful again, and fast L


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 818
   Posted 6/16/2009 7:24 PM (GMT -6)   
Thanks for the answer my new doc thinks I have UC because it mostly affect my butt :P
But my old doc said CD because I had inflammation else in the colon. More like spots but in the Rectum it is straight up to 16 cm..
So I am not sure. I would rather have CD than UC because there are more treatment options for CD or at least where I live, I know CD is more serious but I know CD better and I am getting used to it.
24 year old female
Diagnosed with Crohn's disease in December 2008..
Medication - Asacol, Remicade, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 6/16/2009 7:31 PM (GMT -6)   
Yep, me too.  All in the large intestine with terrible rectal involvement.  Originally diagnosed as UC then switched to Crohn's as the symptoms started to become pronounced (anal tags, fissure, fistula, skip patterns with deeper ulceration). 
--female dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone, Tysabri
--Prochymal in Phase III study (can't wait til it's approved!)
--currently taking methylprednisolone 40mg-taper.  Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09


isergodur
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Date Joined Jan 2009
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   Posted 6/16/2009 8:09 PM (GMT -6)   
daisyrambler said...
me too .... i have crohn's colitis .. i have it in my nose and mouth and all the way to my rectom .....


How is it in you nose?
24 year old female
Diagnosed with Crohn's disease in December 2008..
Medication - Asacol, Remicade, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 6/16/2009 8:11 PM (GMT -6)   
I only have CD in the rectum. Several peri-rectal abscesses and fistulae, and small anal skin tags. Colonoscopy and small bowel follow through showed nothing else except granulomus tissue around the fistulae in the rectum. Because of the granulomus tissue, the say I have CD. No other symptoms except low vitamin D and fatigue (which is slowly getting better with vitamin D).

I do remember someone else on this forum with only rectal CD. Seems like we are a rare breed.


Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 6/16/2009 9:25 PM (GMT -6)   

I wish it were only rectal CD! I have tonnes of skin tags, fistulas abscess and fissures AND then crohn’n in my tummy as well! I really can’t win L how depressing

 

I was initially told after my first colonoscopy “my crohn’s is everywhere – the whole bowel is ulcerated and scarred”


GDen
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Date Joined May 2009
Total Posts : 703
   Posted 6/16/2009 10:50 PM (GMT -6)   
My GI's think I have CD vs. UC, based on my colonoscopy. But they're not certain because they haven't seen whether it's also in my small intestine. Seems like it's close to my rectum since I've been squirting out bright and dark red blood, past and present. Will be picking up cortifoam real soon.

*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 6/16/2009 11:29 PM (GMT -6)   

Colifoam rectal enemas are great – I had no pain from them and they helped with my symptoms, but by that stage I already had an abscess and fistula, so earlier intervention would have been better!! They’re really easy to use too – apart from the whole minute of shaking the bottle each time! I was so sick once that I didn’t have the energy to shake the bottle and had to give it a miss.

 

So they’ve done a colonoscopy on you but they can’t tell if it’s in your intestines? That’s kind of weird! Surely they could have seen it? It’s so confusing – I had a terrible GI when I was diagnosed and he gave me little/no info on where the disease was located (instead saying it was ‘everywhere’) – so I had no idea I had to be wary of my rectum as well as my intestines. I lost a lot of blood and had a lot of pain, but if I’d known earlier I could have looked after my bottom end a bit better (wipes, creams etc). Hopefully you’ve got to it earlier than me and don’t develop abscesses – those things are evil!


GDen
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Date Joined May 2009
Total Posts : 703
   Posted 6/16/2009 11:56 PM (GMT -6)   
Looking forward to the Cortifoam then! But not the $145 per can it costs.

My GI's don't know if I have colitis in my small intestine, but they definitely saw a lot of it in my large intestine, and in patterns resembling Crohn's. Can colonoscopes go up into the small intestine? I imagine endoscopes can't go past the stomach, but I don't know. I also had a barium follow-through, but I guess that didn't show inflammation in my small intestine.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 17877
   Posted 6/17/2009 12:27 AM (GMT -6)   
Colonoscopies can only reach as far up as the lower part of the TI (terminal ileum), barium follow through, small bowel x-ray are ways of checking the entire small bowel.

With CD the inflammation will be skipped patterns of inflammation (regardless where the CD is), with UC the inflammation will affect the entire area with no skipped pattern, also with CD it can affect the many layers of the intestinal lining where as with UC is will only affect the surface of the lining, those are 2 good ways that a good GI can determine whether it's UC or CD. UC is limited to the colon/rectom only (no anal involvement) CD can affect any part of the GI tract from mouth to anus (I've never heard of CD affecting the nose).

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


*Phoebe*
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Date Joined Sep 2005
Total Posts : 769
   Posted 6/17/2009 12:40 AM (GMT -6)   

Yeah I’d be interested in how it affects the nose too!

 

I’ve had a crazy outbreak of mouth ulcers once (I counted 27 at once!) but that happened very randomly and went away after a week.

 

Sometimes I think I’d love to watch up colonoscopy video, so I could really ‘see’ this disease. Gross, I know – but I think it would be interesting.

 

Wow those enemas are expensive!!! Mine were $30 AUS a bottle – which was expensive enough for me on my salary! Is that $145 for one bottle or two (mine came in pairs)? Do you get any of that money back?


GDen
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Date Joined May 2009
Total Posts : 703
   Posted 6/17/2009 1:27 AM (GMT -6)   
They can also see the entire GI tract with a camera pill. Not sure why they didn't use one.

I got to watch my colonoscopy on the TV. It was wild. I was moderately sedated during it.

The pharmacy said it's $145 for one can when I called them. I'll see when I pick it up. It sounds like Cortifoam is perhaps the same (or similar) drug as prednisone, only it goes in the other end.

*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 6/17/2009 5:24 PM (GMT -6)   

Yes and you don’t get stuck with the prednisone side-effects which is brilliant!!


GDen
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Date Joined May 2009
Total Posts : 703
   Posted 6/17/2009 5:27 PM (GMT -6)   
I picked it up--it is indeed just one can. Appears it contains 15 doses.

Becoming undone
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Date Joined Jul 2007
Total Posts : 927
   Posted 6/17/2009 6:31 PM (GMT -6)   
I haven't been able to sit correctly for about 2 years now...I'm one of the weird cases with little to no small bowel involvement but got it in the two ends (mouth to stomach and sigmoid to anus). The CD was originally spotted in the sigmoid...

And yup, like Pheobe, I have a mess load of ulcers in the mouth...they seem to heal, then new ones appear...kinda like the bum...fissures heal, then get new ones...trying to find the "one size fits all" approach to this DD is quite frustrating to both me and my docs...anyone else have these difficulties?
"The earth laughs in flowers"

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