what does a stricture/narrowing feel like?

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kelli_C
Regular Member


Date Joined Jul 2009
Total Posts : 130
   Posted 9/4/2010 7:42 AM (GMT -7)   
Good morning,

I am wondering what a stricture and/or narrowing of the ileum feels like. Even when I'm not having any bloody stools, I often feel abdominal pain. I went for like 9 or 10 years without taking any regular meds, and now I'm feeling paranoid that I might have caused my body damage during that time. I've been reading that even though one may not feel symptoms, the damage could still be happening anyway. So I'm just curious about what this feels like...thanks!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/4/2010 2:59 PM (GMT 0)   
Well I was one who didn't think I needed meds and didn't take them for my nearly 20 year remission. I did not have any symptoms, then BAM one day I started getting some crampy abdominal pain. It started out a little mild, but within time it started getting worse. It became pain that would come in waves, much like labor pains. I felt like I needed to poop or fart, but nothing would come out. My stomach got really bloated and painful, until I started becoming really nauseous. The pain got so bad that I could no longer stay home and had to go to the ER. Wound up getting surgery for a 12 in stricture in my ileum/cecum area. So I went from one day to the next from good to bad. Hope that helps.
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

NiceCupOfTea
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Date Joined Jan 2010
Total Posts : 8566
   Posted 9/4/2010 8:38 AM (GMT -7)   
I still find it a bit odd you got an obstruction out of nowhere, Nanners... I'm wondering if you had inflammation without symptoms for a long time, or if the inflammation just literally came on overnight.

In my case, if I start getting obstructions, the symptoms will have been building up for years beforehand. I already know I have strictures somewhere; I just don't know where yet or how bad. Anyway, to answer your question, TC, if you are getting a lot of pain that could be symptomatic of a stricture. Loud gurgles ("borborygmi") can also indicate narrowing. Other than that, the only surefire way to find out for certain is through GI tests, such as a small bowel follow-through.

Incidentally, don't beat yourself up about having caused your body damage. It's hard to take a disease seriously when you have few symtoms and feel healthy. But more importantly meds may not have altered your eventual outcome. They can keep disease at bay or delay relapses, but they don't do it always. It depends on how well you respond to medication and what course your disease is genetically predetermined to take. In a substantial minority, Crohn's takes a mild course and it will always stay mild, no matter what.

There was somebody on here recently who had had Crohn's for 10 years (misdiagnosed as UC for nearly all of it), and she had had hardly been on meds but her disease was still mild. Meanwhile I've had Crohn's for 10 years, had also not been on many meds, and my disease became severe. When I expressed a sense of guilt to the GI for not doing enough in the early years, she told me that basically she didn't think anything I could have done would have made any difference. She thought my Crohn's would have become bad anyway.

In reality I don't know. And nor do you. Meds might have kept you in remission for longer, they might not. You can't change the past. The only thing you can do is treat your Crohn's disease from now on.

kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 9/4/2010 8:59 AM (GMT -7)   
NCOT, thanks for that lovely and precise explanation! My GI has said as much to me, especially when we have conversations about moving me up the med ladder from 5-ASAs.

I remain concerned that I'm developing strictures in the small bowel. I had one in my esophagus a few years ago, which has not returned after a balloon dilation. I had small bowel follow-thru at the beginning of my diagnostic path 10 years ago, but not since.

The most confusing thing is that no one really knows the answer to the point you make about the progress of the disease being essentially unpredictable. I wish the research would focus on that some.
*******************
48 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (6g/day), Sulfazine (1.5 g/day), Prevacid, vit. D (20K iu), flax seed oil (2 tsp/day), mesalamine enema as needed.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/4/2010 9:34 AM (GMT -7)   
NCOT, thats the very point I make to all to continue on their meds, so that they don't suffer like I did. The damage that occurred in me was because "unbeknownst" to me damage was occuring on a microscopic level without me even knowing it. So yes I obviously had inflammation from time to time without knowing it which in turn created scar tissue that eventually blocked me up.
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

kelli_C
Regular Member


Date Joined Jul 2009
Total Posts : 130
   Posted 9/4/2010 9:44 AM (GMT -7)   
Nicecupoftea, I think I'm the one you're talking about (misdiagnosed for UC all these past years; for some reason my signature is missing)! :P

I am worried about the past, but you guys are right about I can only control from here on out, so I'll be more contentious! I'll have a screening colonoscopy in January, and i'll be curious to see how everything looks.
UC dx in 1998 (age 18) - proctosigmoiditis - Allergic to Sulfa
1998-2009 Asacol 2/2X daily - very sketchy about taking it...pretty much drug-free for a long time.
Jan 2006 - Crohn's? UC?
Aug 2009 - flare - Mesalamine enemas and 4 Aprisos daily...still a bit sketchy about taking the Apriso once the flare was done
August 2010 - Flaring - Asacol HD and sfRowasa
8/10 - Doc dx me with Crohn's!

Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 9/5/2010 12:17 AM (GMT -7)   
Nanners as usual has good points, my similar experience was because I was undiagnosed at the time but even though my flare hit hard no surgury was done for over a year. In hindsight (after the surgury) I should have had surgury right away after my flare started but some how the Dr's missed it again.
Male, 55 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since May, 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. In the past, 5-asa Salofalk, Asacol, Entocort,  Imuran and Prednisone.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8566
   Posted 9/5/2010 1:00 PM (GMT -7)   
Nanners - It's just the lack of symptoms which confuses me; I don't see how scar tissue can build up to the point of obstruction unnoticed. As I said in my last post: if I do get an obstruction the symptoms will have been there for years beforehand. I seem to have a very slow-burning, simmering form of the disease; I'm actually quite curious to know if Crohn's inflammation can attack so fast it can make the intestines swell up enough to obstruct in just a day.

Kelli - Ah, I remembered the name. No, really... *runs* >_>

*returns, a little sheepishly* It's really a very good idea not to be passive in your medical treatment. I was incredibly so in the beginning and, after 10 years, it's got me nowhere. Apart from a feeling of immense frustration over being overlooked and disregarded. The thing is, doctors don't seem to ever volunteer info of their own accord; if you want to know anything you have to be blunt and ask them, otherwise they won't bother telling you. I didn't know a thing about my Crohn's in the early years because nobody ever told me and I was too shy to ask, even though I really wanted to know. I have since gotten somewhat more bold on that front (although my social phobia still kicks in), and have found that my current doc at least will answer my questions without biting. The best thing to do is be pleasant but questioning. If you want to know more, ask. If you're unhappy about a proposed treatment, express it. If you want to try something that hasn't been mentioned, suggest it. Most doctors do actually want you to get better, but they do not have a lot of time and they have even less people skills. That's why you have to try to get the most out of them, 'cos they won't return the favour for you.

Feel a tad presumptious now... Oh well, I hope that helps anyway. Good luck with the colonoscopy in January :p

PS: Oops, forgot kazbern's post. You're welcome :p And you may be interested in this piece of research based on what you said (will need a PDF reader to open it):

www.nacc.org.uk/downloads/research/2009/JamesLee.pdf

Post Edited (NiceCupOfTea) : 9/5/2010 2:07:10 PM (GMT-6)


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 9/5/2010 1:26 PM (GMT -7)   
By the time I was diagnosed, I already had 6-8 inches of disease in my terminal ileum. That didn't happen overnight. I had some mild symptoms as a teenager, and I know for sure I had it then—maybe 5 years before diagnosis.

Nanners is right: you can feel good and the CD can be slowly brewing. I think it can become severe quickly and then cause faster damage, hence a stricture all of a sudden. I think everyone with CD should be treated at all times too, even if it's through natural remedies or something lighter like pentasa.

Pentasa hardly absorbs outside the intestines, so what's the harm with it, at the very least? A good probiotic and maybe some digestive enzymes couldn't hurt either. And we should all try eat a nutritious diet too. Our bodies are in desperate need of all the help it can get.

Best wishes to all.

aronk
Regular Member


Date Joined Jun 2006
Total Posts : 229
   Posted 9/5/2010 2:59 PM (GMT -7)   
My situation was a lot like Nanners. I didn't take meds for my Crohn's for many years (12+ years, at least). I had symptoms, but they were manageable. My GI finally talked me into starting Asacol as a preventive medication after one of my yearly colonoscopies. Well, apparently I had inflammation at the microscopic level too, because as soon as the Asacol started working I got scar tissue which caused my partial obstructions. I really and truly didn't feel that sick until BAM--the partial obstructions started. Then I was nauseous and vomiting every morning and my stomach looked like I was 7-8 months pregnant. I finally went to the Dr. after my neighbor came down and congratulated me on my upcoming pregnancy! Ha! I wasn't pregnant, of course, just really sick.
Angela 
Crohn's Disease for 18 years.. 1st Resection June 2009 developed anastomostic leak and EC fistula. 2nd Resection, April 1, 2010-to fix leak and fistula-feeling fabulous now.  Taking 100mg Imuran for maintenance. 

aronk
Regular Member


Date Joined Jun 2006
Total Posts : 229
   Posted 9/5/2010 2:59 PM (GMT -7)   
My situation was a lot like Nanners. I didn't take meds for my Crohn's for many years (12+ years, at least). I had symptoms, but they were manageable. My GI finally talked me into starting Asacol as a preventive medication after one of my yearly colonoscopies. Well, apparently I had inflammation at the microscopic level too, because as soon as the Asacol started working I got scar tissue which caused my partial obstructions. I really and truly didn't feel that sick until BAM--the partial obstructions started. Then I was nauseous and vomiting every morning and my stomach looked like I was 7-8 months pregnant. I finally went to the Dr. after my neighbor came down and congratulated me on my upcoming pregnancy! Ha! I wasn't pregnant, of course, just really sick.
Angela 
Crohn's Disease for 18 years.. 1st Resection June 2009 developed anastomostic leak and EC fistula. 2nd Resection, April 1, 2010-to fix leak and fistula-feeling fabulous now.  Taking 100mg Imuran for maintenance. 

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 9/6/2010 7:38 AM (GMT -7)   
The symptoms of a stricture forming can be very subtle, and easily missed. My daughter was misdiagnosed for two years, partly because she never had D. Also, no pain UNLESS she found just the right spot (which the docs never seemed to be able to do) and pressed really really hard. She had loud abdominal noises (which we now know were caused by the stricture), which were dismissed as normal by the doc.
 
Then, one night at college, she had some mild cramping - ignored it and ate popcorn. Woke up at 5 AM vomiting, in the worst pain of her life...waves of pain like the pain of childbirth. Went to the student health center - they called me and said she might have a virus, and that they would keep her there to watch her. A doc who saw here, there, said, "She looks pretty good to me," but the nurse answered, "Well, a few minutes ago, she was writhing in pain."
 
The doc noticed pain when pressing on the LRQ so I then received another call, saying she was being sent by ambulance to the hospital, for suspected appendicitis. Thank goodness the hospital took a cat scan that showed the appendix was fine, but suspicious narrowing in the terminal ileum. At least they didn't mistakenly take out her appendix.
 
So yes, inflammation can cause fairly silent damage...and by the time the strongest symptoms show up, the damage might be irreversible. In her case, thanks to SCD diet and Entocort, the stricture is gone...but it took about a year for it to go away. If the stricture had been scar tissue, the damage would have been permanent.   
Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past three years. March '09 colonoscopy showed stricture gone but two spots of inflammation in TI. Used LDN to taper off Entocort last fall. (Was on Entocort since April 06.) Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 2000IU vit D3, 1000 mg calcium, 27-54 mg iron, monthly B12 shots, daily oral B12 twice a day (one B complex, then later one B 500), 10mg zinc. SCD diet. 

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8566
   Posted 9/6/2010 11:26 AM (GMT -7)   
Thanks, njmom - that does help to explain how an obstruction can come out of apparently nowhere a bit more. It's kind of scary, though. I was pretty secure in the knowledge that I didn't have that "type" of Crohn's, and in reality a large part of me still thinks that way. I did think I had a temporary/partial obstruction one night last December, but since then I've had nothing. Pain and bloating sometimes, but nothing resembling an obstruction. I refuse to change my diet on the offchance an obstruction might happen one day; if it does, it will be my fault, but I can live with that.

By the way, with regards to aronk's post, only Remicade has the reputation of worsening strictures through healing inflammation so fast it creates scar tissue, but I have wondered why that same effect doesn't apply to other drugs too. As long as any drug heals inflammation quickly, I don't see why it can't create new scar tissue too.
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