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tlw
Regular Member


Date Joined Nov 2006
Total Posts : 87
   Posted 4/15/2008 8:37 AM (GMT -6)   
Hi All.
I had my annual colonoscopy yesterday at the cleveland clinic.  Was told that I have a stricture.  I have been home for 2 years now and my activities are very limited.  I spend most of my time at home because I suffer from uncontrollable diarrhea.  To avoid embarrassing public accidents, I stay home mostly.  My doctor says the only way they can remove the stricture is to remove my entire colon.  I can live with the diarrhea; by staying home and limiting my public outings.  But I am not sure I want the surgery.  
 
Has anyone ever had a "MRI" to look at colon and stricutures?   He says the stricuture prevents him from seeing beyond to entire colon.  I'm thinking a mri would accomplish this.  I'm just scared and don't want to have the surgery. 
 
Any feedback is welcome.  Thanks.

Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 4/15/2008 9:39 AM (GMT -6)   

What symptoms do you think the stricture is causing you? I have a stricture in the sigmoid colon. I have had three colonoscopies, two sigmoidoscopies, CT Scan, Endoscopy and small bowel follow through within the last 8 months. Do not know what a MRI would show. I am seriously considering surgery as the GI could not get past the stricture in February and I worry about it perforating. Have an appointment with colorectal surgeon on May 7th but in my case I am hoping it will only be removal of a few inches and resection.

I am fairly new to Crohn's but am thinking there has to be more going on than just a stricture for him to say that he has to remove the entire colon? Everybody is differnent but I would not like to have to stay home most of the time because of Crohn's.

Hoping you can get some answers and feel better.


55 yr. old F dx. CD 07/07
Currently on no medication


tlw
Regular Member


Date Joined Nov 2006
Total Posts : 87
   Posted 4/15/2008 11:44 AM (GMT -6)   
Thanks Bammer.
He said the stricture is only allowing a very small opening where my poop comes out which causes the diarrhea. His concern is that the stricture prevents him from seeing entire colon. My question to him was can't they remove the stricture w/o removing my entire colon. He said no. He never mentioned a possibility of the stricture perforating. He did say strictures could increase risk of colon cancer by 20%

belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 4/15/2008 11:52 AM (GMT -6)   
Hmm! Where in the colon is this stricture located? Do you know whether this stricture is from scar tissue or from inflammation? I would think the stool would already be formed in the large bowel, so wouldn't a stricture be more likely to cause painful skinny formed movements, rather than diarrhea? I would tend to think if you are suffering from intractable diarrhea it is most likely from inflammation. I didn't know that strictures increased the likelihood of colon cancer. I thought it was prolonged inflammation that prompted the cellular changes that lead to cancer in the colon. If your stricture is from inflammation then medication should provide you with relief from the stricture -- and more importantly -- from your diarrhea.

What medications are you currently on?
Belleenstein:

30+ years living with Crohn's.


Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 4/15/2008 1:03 PM (GMT -6)   

That was my thinking too. My stools are skinny and formed. So far no pain which is one reason I questioned surgery but I do not like the fact that he cannot get past the stricture with even a pediatric scope. Doctors feel like my stricture has been there for quite some time and is made up of a lot of scar tissue. I have not heard that strictures themselves increase the risk of colon cancer. I have had multiple biopsies and last colonoscopy used blue dye and they have not found any sign of cancer or dysplasia.

I am lso wondering what medications you are on? They initially were going to try Remicade but now feel like that would not help my situation.


55 yr. old F dx. CD 07/07
Currently on no medication


Sugarmarie
Veteran Member


Date Joined Jul 2003
Total Posts : 1192
   Posted 4/15/2008 1:30 PM (GMT -6)   
I too have strictures as far as the colon cancer thing the reason they say it can cause more is really that since they can not see the entire colon to completely rule out colon cancer . My doc told me that too,it makes since to me. I just had a Virtual colonoscopy to check my entire colon since he could not get through even with a pediatric scope. PLEASE make sure your insurance will cover the virtual colonoscopy/ CAT scan. For example my insurance AETNA only covered it after 4 failed attempts at a regular scope with a pediatric scope with in 1 year. They consider a virtual scope experimental and only covered it as a last resort to check for colon cancer. Also the scrip of the virtual must say its for DIAGNOSTIC not routine,before make sure the place doing it knows exactly how to code it so it gets covered. I have to fight AETNA 3 times to get it covered because the place kept coding it wrong. Finally got it covered it was 1,600 dollars what a relief. You still have to prep like with a regular scope.
Confucius say : He who goes to bed with itchy butt wakes up with stinky finger.

Words of wisdom: Never trust a fart

:) Sugarmarie A.K.A. Poopy Pants :)


Pooie1981
Regular Member


Date Joined Mar 2008
Total Posts : 266
   Posted 4/15/2008 4:16 PM (GMT -6)   
Just a question since you are all on the topic... can a stricture heal on its own? Will it always be there unless you have it removed? What are the symptoms?
Ulcerative Colitis Diagnosed May 2004
400mg Asacol 3 times per day.... increased to 6 400mg per day Mar.11
Asacol changed to Mesasal 500MG 3 times per day April 1
Entocort 3 pills once a day
Daily Vitamin for Women and Folic Acid


justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 4/15/2008 5:14 PM (GMT -6)   
If a stricture is just an inflamed area it can go away but if it is caused by scar tissue it will not. Strictures can cause a great deal of pain due to things not being able to pass through. I would ask the colon rectal surgeon about dilating the stricture before I would let them take everything. Also, if the stricture is right inside your bottom there are suppositories which can help to keep the area more pliable.

inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1337
   Posted 4/15/2008 8:13 PM (GMT -6)   
Just having a stricture doesn't mean surgery. I've had a severe one at my terminal illeum for years. Mine is scar tissue and will not go away without surgery. Unless there is inflammation going on to cause a blockage, I feel fine. My GI looks beyond it as best he can w/ a small bowel follow through. Determine how it is impacting you before rushing surgery, some people do great with surgery right away but some can wait.
Currently in remission!


tinglebell
Veteran Member


Date Joined Apr 2007
Total Posts : 530
   Posted 4/15/2008 10:11 PM (GMT -6)   
I know the Cleveland Clinic is supposed to be top-notch but definitely get a second opinion. Have they done a small bowel series? How can your doc say they would take your entire colon, without some evidence of the colon being diseased. And guess what, I have had diarrhea for 40 years before and after resections x 3. So if that is why you would do it, I would seriously ponder surgery. They can check for blood in your stool to r/o malignancies and now am hearing of succesful stricturoplasties, which should then allow them to pass a scope. Good luck to you.
DIANNE
Humira, pred and entocort 1/08
3 small bowel resections, 1 for perforation, 2 for strictures 
 


Sugarmarie
Veteran Member


Date Joined Jul 2003
Total Posts : 1192
   Posted 4/15/2008 10:22 PM (GMT -6)   
I agree you should get a second opinion I was told back in 1999 that my entire colon needed to come out. I changed docs and its 2008 and I still have my colon no surgeries.
Confucius say : He who goes to bed with itchy butt wakes up with stinky finger.

Words of wisdom: Never trust a fart

:) Sugarmarie A.K.A. Poopy Pants :)


tlw
Regular Member


Date Joined Nov 2006
Total Posts : 87
   Posted 4/16/2008 6:37 AM (GMT -6)   
Thank you all for the input.
My current RX:
3 asacol; 3 xs day; 1 folic acid; 2 imuran 2x day; 2 lomotil 2x day;
was on remicade for about 18 mos but was taken off due to severe rash breakouts;
also take proctofoam and other jells for rectal pain

I have had cd for over 30 years. Symptoms really got bad about 3 years ago and haven't been able to work in 2 years due to uncontrollable diarrhea. Also seeing holistic md. My stool previously in past 2 years was about 95% watery. Since I've been taking ultraflamx and changed diet with holistic md; my stool for past several months has become less watery. Mostly small and mushy; sometimes stringy. I told the dr this but he has been telling me for 2 years that my colon should come out. The first year it was because of the uncontrollable diarrhea (meaning I had many accidents which limits me from working); now this time he's saying due to the stricture I need to have the colon removed. He did not say if the stricture was formed from scar tissue or inflammation. I would of course get at least 2 more opinions before I decide to have surgery but my biggest problem is that because I have been suffering from this disease for 30 years, I guess the past 5 years when I went began my relapse; I have been told over and over to have my colon removed to improve my quality of life. I'm at a point where I don't trust the doctors. I feel they want the colon removed so they can make money. I don't see how removing the colon is going to make a difference because it won't cure the crohns and the disease can come back within a few years; which will require another surgery of some kind. At my age, 53, I don't wish to spend my retirement years in and out of the hospital getting numerous surgeries. If the stricuture does not need to come out; I'd rather deal with the diarrhea.
That's it. Am I crazy?

AmandaH01
Regular Member


Date Joined Jan 2008
Total Posts : 100
   Posted 4/16/2008 8:36 AM (GMT -6)   
tlw said...
Hi All.
I had my annual colonoscopy yesterday at the cleveland clinic.  Was told that I have a stricture.  I have been home for 2 years now and my activities are very limited.  I spend most of my time at home because I suffer from uncontrollable diarrhea.  To avoid embarrassing public accidents, I stay home mostly.  My doctor says the only way they can remove the stricture is to remove my entire colon.  I can live with the diarrhea; by staying home and limiting my public outings.  But I am not sure I want the surgery.  
 
Has anyone ever had a "MRI" to look at colon and stricutures?   He says the stricuture prevents him from seeing beyond to entire colon.  I'm thinking a mri would accomplish this.  I'm just scared and don't want to have the surgery. 
 
Any feedback is welcome.  Thanks.
I already knew I had a stricture but they also did an MRI to see if it had become worse..that was done one time when I was rushed into the ER with extreme pain. It had become worse. I ended up on march 26th having a foot of my ileum, part of my colon and my appendix out.
Currently taking prednisone 40mg, Levoxyl 200mcg, Pentasa 500mg tablets 2 tabs 3 times daily, Ranitidine 300mg 1 tablet twice daily, Darvocet as needed for pain, GNC Women's UltraMega Bone Density vitamin, (Just started Remicade 1-31 given along side benadryl and something with a D)
Dr said with my ileum being so severe that the remicade will speed up me needing the surgery because of the scarring. :-(


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 4/16/2008 9:26 AM (GMT -6)   
Crazy? no. Rational, maybe not. If you are housebound because of uncontrollable diarrhea and meds are not helping, the question is, is there a reason why you want to stay home. Has home come to mean safe? What is your investment in being sick? Are you really afraid of surgery, or might there also be anxiety about what happens if surgery does bring a period of wellness. Sometimes we accept seemingly unbearable conditions because at least they are conditions that we know.

This is what I fear for you. Someday, you will probably will face a life-threatening emergency and end up having surgery. Perforation, general deterioration in health, cancer or some other event will take the choice away from you. How will you feel once you've recovered and realize that your quality of life improves. Will you blame yourself for the years you have lost?

Your doctors aren't crazy either and they are not running around duping people into having surgery just so they can make the big bucks. Trust me, there will be another warm body on the operating table taking your place every time you say no. If you have concerns about the need for surgery, you need to find a specialist in internal medicine for an opinion. Your gastroenterologist, not your surgeon , is the person to ask, do I really need this surgery? It sounds to me like your medical options might be running out. Surgery is not a lot of fun, but it sounds like fun has been in short supply in your life lately anyway.

My heart aches for you and I hope you can find your way through to the root of what it is that makes being a prisoner in your home, at the mercy of intractable diarrhea, a tolerable lifestyle choice.
Belleenstein:

30+ years living with Crohn's.


ajz
Regular Member


Date Joined Apr 2008
Total Posts : 21
   Posted 4/16/2008 11:21 AM (GMT -6)   
 
 
Hi TLW,
 
I have been there.  I just had a resection to remove 6 inches of stricture in my terminal ileum. I was obstructing almost every 2 weeks no matter how I limited my diet and drank fluids.  My doc kept bringing up surgery and I too was terrified.  I wouldn't even bring up the topic with friends and family. I tried to ignore it.  I kept using prednisone to get through life. Finally, I got really sick while on the prednisone and I knew i couldn't fight it anymore. I had surgery last week and feel pretty sore. To be honest, I feel like I was hit by a truck.  But, as bad as it is, it is better IBD pain.  It is a scary decision to make, and I almost backed out a couple of times, but think about it. 
 
ajz

tlw
Regular Member


Date Joined Nov 2006
Total Posts : 87
   Posted 4/16/2008 3:28 PM (GMT -6)   
Belleenstein:
Wow!! I just had an Ah Ah Moment reading your response. This gives me a lot to consider.
Thanks for the slap upside my head.

belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 4/16/2008 9:09 PM (GMT -6)   
tlw please accept my sincere apology if you felt in any way attacked by my earlier post. I don't want you to feel it as a slap. My comments are not sent in the spirit of criticism or judgement. I am just trying to project back to you the message I am receiving from your post. It's just my perception and I may be totally off base. I don't know you or your life circumstance. What i trying to offer is honest perspective, not platitudes. I am trying to be the kind of best friend to others that my best friend has been to me -- the kind who cares enough to confront me when my thinking gets distorted by anxiety, or fear, or exhaustion, or pain, etc. I have been blessed to have friends, family, physicians, employers, etc intervene at moments in my life when I've been stuck in denial. Sometimes the intervention has not been easy to accept. Indeed, there are times when upon reflection, I've stuck to my guns in the face of others' concerns about the decisions I'm making.

If anything I said is resonating for you that's great. Sometimes all we need is to change our perspective and then we can see clearly what has beforehand been incomprehensible. You are facing some very big decisions. In the end, only you can make them. We on this forum can provide some input, but that is all it is. Observation to jumpstart the thought process.

Please be kind to yourself as you sort through all the things you have to think about.
Belleenstein:

30+ years living with Crohn's.


tlw
Regular Member


Date Joined Nov 2006
Total Posts : 87
   Posted 4/17/2008 7:58 AM (GMT -6)   
I truly appreciate all of the feedback. With the consideration and questions you all have posed to me; I have been able to compile a comprehensive list of questions that I can take to my doctor to discuss further. I just feel that there are some unanswered questions which does not allow me to make a decision now. With the help of you guys; I've been able to put together the questions I need answered. Again, thank you all for taking the time to respond to me and thanks for your continued prayers.

tlw
Regular Member


Date Joined Nov 2006
Total Posts : 87
   Posted 5/15/2008 12:53 PM (GMT -6)   
UPDATE:
thank you all for your helpful input and questions.  i received a letter back from the doctor saying that the scope did not pass the rectosigmoid stricutre.  biopsies taken showed chronic active colitis but no cancer.  i was able to respond to his letter with the helpful questions i received from you all.  again thanks.  because his letter says chronic colitis i am really confused again since the last 2 years they have been saying crohns.  that's why i have a problem accepting i need surgery.  they can't seem to get a diagnoses of whether i have colitis or crohns.  i've been going through this for years.

belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 5/15/2008 1:04 PM (GMT -6)   
Chronic colitis does not mean you do not have crohn's. It is a catch-all phrase. All it means is that you have inflammation in your colon and it is chronic not acute. when you have crohn's in the colon, you have crohns-colitis. If you are suffering from strictures, most likely you have crohn's. Ulcerative colitis only affects the surface of the bowel lining and I don't think it is usually associated with strictures.

It sounds like you are feeling less anxious. I'm glad you are in communication with your GI and that there's no sign of cancer.
Belleenstein:

30+ years living with Crohn's.


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3063
   Posted 5/15/2008 3:33 PM (GMT -6)   
tlw-I just wanted to let you know that I recently had to come to the decision to have a proctocolectomy due to Crohn's and it's complications. 
 
Over the years(20+), I have had resections, been on all the meds, spent alot of time in my house, never travelled, had a hard time working and was just miserable.  Then, after complications during a resection, had to have a temp ileo.  I have to say it was the best thing to happen to me (even though I didn't know it at the time).  And, because I say that, I had it reversed the minute my surgeon would let me.  It wasn't more than a few months that I called my GI (at the Cleveland Clinic) and told him I couldn't live that way.  Again, another surgery and another temp ileo which turned into many years of FUN!!  I could leave my house, go shopping, out to dinner, visit with friends and go for walks.  I never worry about bathrooms or traffic!
 
Then, even after that, I started to have more fistula/colon problems.  It wasn't a hard decision for me to take the last step, but what I want to say is that it is not the end of life.  I was very lucky that I didn't have anything serious happen that sent me to the ER, my dr's told me what my options were and let me make the decision.  I will add that I did put it off for a little while...and because of that, my recovery took a little longer. 
 
If you are having reservations, take a "lurk" over on the ostomy site.  There are some great threads that might help you. 
 
Good luck to you and your decision.

Shoshanna
Regular Member


Date Joined Feb 2008
Total Posts : 91
   Posted 5/15/2008 6:05 PM (GMT -6)   
belleenstein said...
Chronic colitis does not mean you do not have crohn's. It is a catch-all phrase. All it means is that you have inflammation in your colon and it is chronic not acute. when you have crohn's in the colon, you have crohns-colitis. If you are suffering from strictures, most likely you have crohn's. Ulcerative colitis only affects the surface of the bowel lining and I don't think it is usually associated with strictures.

It sounds like you are feeling less anxious. I'm glad you are in communication with your GI and that there's no sign of cancer.

 
First of all I have Crohn's and have lived through a stricture and having a resection of my terminal ileum and secum of the colon.  I was at the point of just before mine had totally closed I had not eaten any food for four months prior. 
For your info there are six complications that result from ulcerative colitis.  They are toxic megacolon, colonic preforation, strictures along with a liver disorder called primary sclerosing cholangitis. 
If you doctor could not see beyond the stricture then it means that it smaller than the camera.  It doesn't mean that you have no entry.  If you did then you would have colonic preforation.  These are the same as what would happen if you have crohn's. 
As for an MRI it will give an appearance of the outside of your colon but not the inside.  Also if you continue to hold back from allowing him to treat you you may end up in the position of a colonic perferation. 
I suggest that you allow him to continue. 
Shoshanna

Bammer
Regular Member


Date Joined Mar 2008
Total Posts : 381
   Posted 5/15/2008 8:46 PM (GMT -6)   

I have seen a colorectal surgeon since my last reply and yes forum member's replies help you ask questions. He did a sigmoidoscopy and did get past the stricture using a small scope. When it became uncomfortable he told me to lay on my back which helped. As far as my GI not getting past the stricture with my last colonsoscopy he said it is a flexible scope. In my case the colon is perfectly normal to the stricture, then 5-7cm of stricture which is inflamed then normal past that. He gave me my options and I wonder if doctors give you the worst case scenario of each? Leaving it does increase the risk of cancer but biopsies show no cancer now and it will have to be closely mointored anyway. Balloon dilation, but he will not do this while inflammation is present. Surgery, which would mean about 6 inches (I'm from Canada) of colon removed which is not a lot but went on to say if the resection leaks then you could end up with a stoma. He also said they can not tell how much is scar tissue and how much is inflammation just by the scope. He did show me the signs of inflammation on the screen. I also asked about perforating and he said they could perforate it during a procedure or surgery but my type of crohn's (without fistula's) is not the type that would perforate on its own.

Now I am waiting to hear from my GI and will probably go on some medication to try clear the inflammation.

Thanks tlw for the update. I have been wondering how things have been going with you.

 
55 yr. old F dx. CD 07/07
Currently on no medication


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 5/16/2008 12:16 PM (GMT -6)   
For those with colonic strictures, this newly published report may be of interest:

http://www.ncbi.nlm.nih.gov/pubmed/18022870?ordinalpos=3&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
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