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Intestinal Blockage / Obstruction Support Group

I didnot know Humira caused strictures to get worse. My doc said it may relax or fix it.
I can make it better, but in a percentage of patients it makes it worse first. Since mine is already so close to a blockage, we decided it wasn't worth the risk. If it closed they would have to do surgery anyway only it would be emergency. We'll save humira in reserve for the future.
 
Question for those who have had a resection surgery - about how long should I expect to be kept in the hospital following the surgery?
 

DJW

Forum Monitor
I've only been opened up for resection surgery; usually in 5-7 days.
If it's emergency surgery all regular time frames usually go out the window.
 
Whoops, I should've specified, I'm having this done laproscopically. Not sure if that would affect the estimate.
 
One of the common side effects of intestinal surgery is obstruction, caused by adhesives where the surgical cuts were made. Not sure if laproscopical procedure includes that risk, but be on the lookout for at least two weeks and get to ER if you have any obstructions.
 
Whoops, I should've specified, I'm having this done laproscopically. Not sure if that would affect the estimate.

I had mine done laproscopically on a tues morning and was discharged thurs afternoon. I think that is pretty quick though. But I hit all my milestones early-peeing, pooping, keeping down food, etc. Initially they told me three nights.

I am 3 weeks post op now though and I feel a million times better. I feel like a human being again, its great.:dance:
 
I am 3 weeks post op now though and I feel a million times better. I feel like a human being again, its great.:dance:
That's what I'm hoping for. Sick and tired of being sick and tired, so, I'm ready for this. Colonoscopy and dilation on Monday next week, resection surgery on Tuesday.
 
Do most of you suffer daily with symptoms of stricture/narrowing?? It is a daily battle for me right now, I'm wondering if its normal or if i should start considering another resection....
 
Not daily, but 2014 I had problems with narrowing about once a month. Finally isolated the foods that were triggering them. Since I have eliminated those foods I have been a lot better.
 
Do most of you suffer daily with symptoms of stricture/narrowing?? It is a daily battle for me right now, I'm wondering if its normal or if i should start considering another resection....
I was down and out for like a month and a half before my surgery due to my stricture. I feel a million times better since my resection and am so glad I did it. It was my first one, so I might have felt differently if I had to do them all the time. I'd had the stricture for years though, and up until this summer the symptoms weren't nearly so bad. You know you body, you deserve to feel good, make the decision that will do that for you.
 
Ive had 4 in the past year, one being last night. The first one Ive had I just layed on my bathroom floor for 8 hours puking. I swore I was dying, but it passed. The second time my mom called 911 and they took me by ambulance to the hospital, the freaking ambulance guy had to google what crohns was. Anyway I got there and I told them I was 99% sure I was having an obstruction. So they took blood and less then 10 minutes later (I dont think they even checked the blood work) they came told me I was fine and wasting their time, even though I was crying it hurt so bad, back gave me a tylonal and a generic gravol and basically told me to hit the road. My mom and I didnt even make it 3 minutes from the hospital I puked up the pills they gave me in a 711 parking lot. So I havnt gone back even though when it gets that bad I feel desperate to. What do the drs do for you guys when you go in?
 
Hi Shirley, poor you. Obstructions are so painful & for the Dr's not to take it seriously-well words fail me tbh.
My experience after 3 obstructions is they put an NG tube in asap to drain your stomach & take the pressure out of your digestive tract. Its not pleasant but it works. Strong pain killers are a must but really with all the vomiting they have to be administered by IV. Absolutely zero point in trying them orally-what were they thinking. I hope you forthwith get the treatment you deserve.
Hang in there
Grant
 
Shirley JH, I've had 10 hospitalizations for obstructions. Only one ride by ambulance. Once the pain was so bad that I passed out in the ER bathroom while vomiting. Another time I fell out of the plastic chair in the waiting room and vomited all over the floor. I always get admitted, get a dreaded NG tube and dilaudem for the pain. No food by mouth for a while. I've stayed home for two of them, but it's really nothing to fool with. My sister died at age 44 with a perforated bowel and ended up with sepsis.
 
Thank God I found this support group!
I have been dealing with stricture/partial obstruction for the last four months.
I have been on Pentasa and Prednisone for one month and although it did improve my stricture, it hasn't really helped me out of it. I'm getting some tests done to start on Humira and hopefully, I don't have to drag myself to ER again before I begin Humira (I've been hospitalized 3 times in the past 4 months because of partial obstruction).

What i do want to ask those of you who have been dealing with stricture is the current symptoms I have. I don't have much pain but my gut makes alot of noise.. especially when it goes through the region below my belly button. Everytime it does, I can feel it move.. I'm not vomitting, no diarrhea, have regular, formed bowel movement every morning and no pain but it is still uncomfortable hearing my bowel making that noise every few minutes throughout the day and feeling stuff move inside my abdominal region. Anyone have similar experience??? And what should I do about this?
 
Thank God I found this support group!
I have been dealing with stricture/partial obstruction for the last four months.
I have been on Pentasa and Prednisone for one month and although it did improve my stricture, it hasn't really helped me out of it. I'm getting some tests done to start on Humira and hopefully, I don't have to drag myself to ER again before I begin Humira (I've been hospitalized 3 times in the past 4 months because of partial obstruction).

What i do want to ask those of you who have been dealing with stricture is the current symptoms I have. I don't have much pain but my gut makes alot of noise.. especially when it goes through the region below my belly button. Everytime it does, I can feel it move.. I'm not vomitting, no diarrhea, have regular, formed bowel movement every morning and no pain but it is still uncomfortable hearing my bowel making that noise every few minutes throughout the day and feeling stuff move inside my abdominal region. Anyone have similar experience??? And what should I do about this?

My experience was just like yours. I ended up having a resection, and was much happier for it. I should have done it sooner.
Good luck to you.
 
I wonder how much inflammation is required to cause scar tissue to form.. I have had the pain-like symptoms since March of this year so I guess it's been 6 months since I have had Crohn's Disease. Do you think that will be enough to cause major scar tissue that requires a surgery?
 
I wonder how much inflammation is required to cause scar tissue to form.. I have had the pain-like symptoms since March of this year so I guess it's been 6 months since I have had Crohn's Disease. Do you think that will be enough to cause major scar tissue that requires a surgery?

Im not sure. But if you do have to have surgery, you will feel much better after.
 
the only thing that i'm worried about is the statistic that indicates alot of patients who go through surgery eventually end up having to do another one.. :(
True, but my surgery was 15 years ago. I still think I'll have to have another one someday, but quality of life has been so much better since my first one.
 
I'm nearly 2 weeks post surgery now. I think the worst I've got going right now is an infection at my topmost incision site that they had to put me on antibiotics for. I hate taking antibiotics, they mess my head up.
 
I'm nearly 2 weeks post surgery now. I think the worst I've got going right now is an infection at my topmost incision site that they had to put me on antibiotics for. I hate taking antibiotics, they mess my head up.
I wish you quick recovery! How long did you suffer with obstruction before you went ahead and got surgery?
 
I wonder how much inflammation is required to cause scar tissue to form.. I have had the pain-like symptoms since March of this year so I guess it's been 6 months since I have had Crohn's Disease. Do you think that will be enough to cause major scar tissue that requires a surgery?
I am not a doctor, but I have personal involvement with Crohn's. I think you probably had crohn's for sometime before diagnosis. I know I did, and I think most of us have. Symptoms like obstructions don't just happen overnight. I had an obstruction that required surgery. It was the best single thing I have done in my crohn's journey. After surgery I felt immediately better. about nine months post surgery I was put on Humira. (The delay was due to the insurance company!!! - By the time I was put on all the other crohns med and had them fail me I had inflammation back at my surgery site.) Humira with help from Budesonide, have put me in remission for at least 4 years.
 
I wish you quick recovery! How long did you suffer with obstruction before you went ahead and got surgery?
Thanks! I had that stricture slowly developing over several years, but it was only in the past couple years that it got bad enough to require taking action.
 
Did you try doing anything else before you went ahead and got the surgery?
Not really. I'd been on biologics that had kept my Crohn's under control for a while, so it was manageable, but I screwed up by going off them for a while and had a flareup that brought the stricture to the point where surgery was the only real option to deal with it.
 
Obstruction usually comes severe intermittent pain that comes and goes.. for me, it was pain + vomiting. Also, you usually won't be able to pass gas or have bowel movement when you have obstruction
 
Thanks i had very angry intestines yesterday and struggled to have bowl movements yesterday but managed with straining, today still angry intestines cramps that comes and goes but goes all over i feel as if i have to go but i did manage to have bowel movements today. I took a laxative to see if it would help.
 
You will know if it's an obstruction. Lots of burping and nausea at first, pain is a very bad cramp where you are bent over the whole time. No gas or bowel movement. Then comes the vomiting. It's really miserable.
 
I've had numerous strictures requiring a trip to the emergency room. I've learned not to wait like I have in the past. I use to put off going to the hospital because of the long waits, but after passing out a couple of times, once when they couldn't get a pulse on me and waking up on the big table with the bright light and my shirt cut off of me. Unfortunately, when I came to, they gave me morphine which made me throw up violently(found out I was allergic), dilaudid has always been my friend in these circumstances. I believe eating the wrong foods for me, and stress are the two main factors in the onset of these visits. Definitely a bad day when these things occur.
 
I've had numerous strictures requiring a trip to the emergency room. I've learned not to wait like I have in the past. I use to put off going to the hospital because of the long waits, but after passing out a couple of times, once when they couldn't get a pulse on me and waking up on the big table with the bright light and my shirt cut off of me. Unfortunately, when I came to, they gave me morphine which made me throw up violently(found out I was allergic), dilaudid has always been my friend in these circumstances. I believe eating the wrong foods for me, and stress are the two main factors in the onset of these visits. Definitely a bad day when these things occur.
I hope you are doing well right now,sb7
 
I was a little stupid yesterday. I ate some rice chips which never have bothered me before, only this time we put some grass fed aged cheddar which has never bothered me, on the chips. Well...I awake at 4 this morning and my abdominal region was in pain. Was able to go the bathroom but the pain has continued. I did some breathing exercises which seemed to help manage the pain but it comes back after a few minutes. Will drink a little warm water to see if it will help. I was a little stressed yesterday concerned about having surgery Wednesday on my lip for squamous cell they found. Hopefully I can relax and calm down this flare soon.
 
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dave13

Forum Monitor
Location
Maine
Here's a 'should of known better' story. My wife and I went to the movies yesterday(Pride and Prejudice and Zombies)and I had some popcorn,with butter,of course. We shared a root beer,refined sugar for the most part. After the movie we had some local gelato,very good. Unfortunately,with more refined sugar. The movie was in the afternoon and I flared early evening. It lasted several hours,the wonderful pain of an obstruction. If it would of gone much longer I would of gone to the ER. I hadn't had one since last November,which I ended up going to the ER for. A reminder I have to be vigilant.
 
That's one thing I really miss. Eating popcorn and drinking a Coke at the movies with the wife. Hadn't done that in over 8 years. You could get a free refill of both popcorn and Coke.

Doesn't look like this will ever happen again unless I want to chase it down with a few shots of Dilaudid.

Hope you're doing better.
 
Here's a 'should of known better' story. My wife and I went to the movies yesterday(Pride and Prejudice and Zombies)and I had some popcorn,with butter,of course. We shared a root beer,refined sugar for the most part. After the movie we had some local gelato,very good. Unfortunately,with more refined sugar. The movie was in the afternoon and I flared early evening. It lasted several hours,the wonderful pain of an obstruction. If it would of gone much longer I would of gone to the ER. I hadn't had one since last November,which I ended up going to the ER for. A reminder I have to be vigilant.
Oh Dave! Popcorn. Really. :) At least is was theatre popcorn and not some cheap microwave stuff. (OK, I admit to eating popcorn. I do that, since I have been in remission.)
 
I was diagnosed with CD after an ER visit due to an obstruction caused by a stricture in my ileum. After being put on Humira and Imuran, it's mostly been under control, but I went off Imuran for about a year due to my doctor's concerns with side effects, and I began flaring again. I had scheduled a resection with a surgeon for this past December 2, but during a consultation at Duke, I was told that I could go back on the Imuran indefinitely since it was so effective. So, I decided to give it a shot and postpone surgery indefinitely.

I've been on Entocort since November (which controlled the flare) and Imuran since the end of December. Unfortunately, I wasn't aware of the time it took for Imuran to take effect and began tapering the Entocort way too early. This led to the flare coming back with a vengeance. I've gone back to the full dose of Entocort and upped my Imuran dose from 100mg to 150mg. I'm getting better, but not to where I was before I started tapering the Entocort. I'm afraid this latest inflammation is going to lead to more scar tissue and a resection.
 
Anne-Did you mean resection? If so I had 22cm(almost 9in) of my colon at the splenic flexure resected Feb 16th(with temporary ileostomy). I was in the hospital for 10 days(they said it would only be 5-7 days but I had distension and nausea) When I got home i started getting better much quicker than in the hospital. I walked everyday and ate high protein meals to help with healing. The week after the hospital i didn't work. The 3rd week I worked form home on the computer. The 4th week I was back in the field but took it slow(I'm in sales). 5th week I started traveling again. I'm feeling sooooo much better than i did before the surgery. I was getting horrible obstructions that made it almost impossible to do anything. I have my ileostomy reversal May 6th. Everyone's surgery goes different and recovery time can be drastically different. Mine was laproscopic which helped. Also, your time getting back to work will also differ on what type of job you have/how physically demanding it is. The not lifting more than 10lbs for 6 weeks was rough. I am now exercising, jogging, even back to the rock climbing gym(the harness is awkward with the ostomy).
 
I went in the hospital at the end of may because of pancreatitis. I had the resection April six and was released April 22. It was June before I could go back to work. About lifting I tried to take some trash out too early and it ended up all in the road.
 
After a couple of years on Cimzia and still being hospitalized for obstructions and a perforation, I'm finally going to have a resection near my terminal ileum next month.

I'm excited because I'm just sick of being sick. Living off oatmeal for months at a time has worn thin.
 
After a couple of years on Cimzia and still being hospitalized for obstructions and a perforation, I'm finally going to have a resection near my terminal ileum next month.

I'm excited because I'm just sick of being sick. Living off oatmeal for months at a time has worn thin.
Hoping the best for you
 
I had my surgery a little over a week ago and while the recovery has been more difficult than I thought, I've been able to eat anything without distention or pain. Sadly my appetite isn't there yet to take full advantage of this.
 
Hi SCCrohnie, my take on lack of appetite after surgery is its the bodies way of saying take it easy. After every surgery I've always had little or no appetite sometimes for upto 2 or 3 weeks afterwards & then one day I get up & the hunger is there. Given time it will return. Get well soon.
Rgds
Grant
 
Hi SCCrohnie, my take on lack of appetite after surgery is its the bodies way of saying take it easy. After every surgery I've always had little or no appetite sometimes for upto 2 or 3 weeks afterwards & then one day I get up & the hunger is there. Given time it will return. Get well soon.

Rgds

Grant


Thanks for the tip Grant. I finally got hungry yesterday a little over a week after the surgery. But I'm not stuffing myself yet.
 
It took about 2 weeks for me to get an appetite after 22cm of my colon was removed. I had lost a ton of weight pre and post op so when I got my appetite back I was eating about 3000-5000 calories to gain it back. Listen to your body, it will know when it's ready to handle to food. Until then, just try to make sure what you do eat is good quality, high protein(needed to repair) foods.
 
I had pain and vomiting episodes (maybe they were partial obstructions and I did not know) on a fairly regular basis during the 6 months leading up to the obstruction that resulted in my resection and diagnosis. During that time I had been assured that it was how my IBS "presented" what a crock.

same thing happened to me..was sick off and on for over two years and the docs refused to take tests, saying I had IBS. Many times I .was told that since I was overweight at the time then I couldn't have anything more serious. It wasn't til I had my first Bowel obstruction that the surgeon on call diagnosed me with Crohn's dsease...In the past 20 yrs I have had about 2 dozen obstructions....some partial and some total
 
Hello,
I had a partial bowel obstruction May 4 of this year and had to go to the ER; was admitted for 4 days to the hospital. Had an NG tube for a couple of days.
I had been feeling better until a week or so ago, and I'm having a constant feeling of sharp gas pains; like I need to pass gas and can't or poop and can't. I have passed gas and pooped, but it hasn't relieved the pain.
I've never had pain be constant like this when I've had obstructions, and I've had several partial obstructions.
Can this be the partial obstruction flaring up again? Usually it's off and on colicky pain with vomiting, and I haven't vomited with this constant pain.
When I take my oxycodone which is prescribed for back pain, it lessens the feeling of pain in my abdomen, but it doesn't go away.
Any comments or suggestions as to what I can do to make the pain go away are greatly appreciated.
I tried to get an appointment with my gastroenterologist and she doesn't take my current insurance. I've got to try to find a different doctor. I live in Lufkin, TX, and there are 2 gastroenterologists in town (previous dr in Houston where I used to live).

Thank you,

Dana B.
really hurting and don't know what to do
 
Houston is about the closest city with a lot of gastroenterologists, and I have a call in to a Dr DuPont whose name was given to me by my old doctor's nurse (old dr who doesn't take my insurance anymore). I actually called his office Wed, Thu & Fri last week but got vm of the "new patient coordinator". Of course he did call me on Thursday when I couldn't get to my phone before it went to vm. I called right back but got his vm again...I called first thing Fri morning, got vm; then called again Fri afternoon and got vm again...no return call...guess I'll try again tomorrow.

My old doctor's nurse told me neither she nor Methodist Hospital who she's affiliated with, take ANY insurance that's from the Marketplace, which is the only insurance I could get. I thought doctors couldn't refuse the Marketplace insurances (Obamacare)? Guess they can...

I will post again after I talk to Dr DuPont's new patient coordinator -- I hope I can get an appointment soon...will have to drive 2 1/2 hours each way, but willing to do that for relief from this pain...

Thank you for your reply,

Dana
 
Houston is about the closest city with a lot of gastroenterologists, and I have a call in to a Dr DuPont whose name was given to me by my old doctor's nurse (old dr who doesn't take my insurance anymore). I actually called his office Wed, Thu & Fri last week but got vm of the "new patient coordinator". Of course he did call me on Thursday when I couldn't get to my phone before it went to vm. I called right back but got his vm again...I called first thing Fri morning, got vm; then called again Fri afternoon and got vm again...no return call...guess I'll try again tomorrow.

My old doctor's nurse told me neither she nor Methodist Hospital who she's affiliated with, take ANY insurance that's from the Marketplace, which is the only insurance I could get. I thought doctors couldn't refuse the Marketplace insurances (Obamacare)? Guess they can...

I will post again after I talk to Dr DuPont's new patient coordinator -- I hope I can get an appointment soon...will have to drive 2 1/2 hours each way, but willing to do that for relief from this pain...

Thank you for your reply,

Dana
If the voicemail game is still being done, I would probably go into an ER that takes your insurance. No reason to go through life with the pain of an obstruction. Been there, done that.
 
Update from darubo --
Dr DuPont wasn't in my insurance network, so I couldn't see him. So I called Baylor, which is where I was diagnosed and neither of the doctors I have seen there had any appointments available for over 2 months; were all booked up. They offered an appointment with the Physician's Assistant on June 17 and I took it.
She (the PA) told me she suspects I have another stricture because of the constant pain and bloated feeling I'm having. She wants me to have a CT enterography and an EGD and colonoscopy.
All of these tests were done a few years ago when they were trying to figure out what was wrong with me when I kept having attacks of severe abdominal pain and vomiting. Each test result was "normal"; the CT didn't show the stricture that I had which was finally found by me swallowing a camera capsule; the colonoscopy and EGD were "normal".
While I felt grateful the tests were normal, I was so frustrated that they couldn't find what was causing the pain attacks and I'm afraid if I do have a stricture again, the tests are not going to show it because they didn't show it before.
Finally the camera capsule showed pictures in my terminal ileum of ulcers and a stricture. The camera got stuck, which the doctor told me would probably happen, and in Oct 2012 I had a bowel resection and the stricture was removed.
I understand that the tests have to be done, but I am dreading trying to drink the prep -- it makes me vomit, and even just thinking about having to drink it makes me feel like I'm going to vomit. I don't know if I'm going to be able to get it down so they can do the tests. Any advice or suggestions?
And the PA said that if it is another stricture that of course I'd have to have surgery to remove it and that she would definitely recommend that I start being treated with a biologic once I'm healed from the surgery. I had healing complications with the last surgery and had to have a wound vac, so I'm afraid of that happening again, not to mention trying to figure out which one of my sisters can be with me during the surgery and recovery, and I don't live in Houston any more; I did in 2012 when I had the bowel resection, but now I live a 2 1/2 hour drive from Baylor in Houston and the hospital where the surgery would be done. My sisters both work full time and I hate disrupting their lives and being a burden to them...
I've been taking Entocort 9 mg a day since the 2012 stricture surgery, and having to be on a biologic scares me. PA said that I should probably have already been on one since my body seems to want to make strictures...
So any information, suggestions, advice etc. would be greatly appreciated.

Thank you,
Dana B.
East Texas
 
Hi Dana.

Just so you know, the colonoscopy preps have got better since 2012. They still are not anything the normal person would enjoy drinking, but better than the old prep in used a few years ago. Hopefully the colonoscopy and the other tests will find what is going on.

I had a surgery in Oct. 2010 where they removed 3.5 feet of small intestine and colon. After the surgery I was put on Humira. It has put and kept me in remission for 5 years this month. I have never had a side effect from Humira and I find taking it is easy to do. I know the list of side effects for biologics is scary, but I came to realize that Humira might double the chance of cancer, but the chance of getting a cancer is 3 out of 100,000 people. The biologic doubles the chance (6 out of 100,000). That is still a 99,994 out of 100,000 chance of NOT getting the cancer. So it is a matter of perspective. And I had a 100% chance of Crohn's Disease, which needed to be put under control. So I went for the biologic. And I am very glad I did. Don't let the biologic scare you.
 
Hi Dana.

Just so you know, the colonoscopy preps have got better since 2012. They still are not anything the normal person would enjoy drinking, but better than the old prep in used a few years ago. Hopefully the colonoscopy and the other tests will find what is going on.

I had a surgery in Oct. 2010 where they removed 3.5 feet of small intestine and colon. After the surgery I was put on Humira. It has put and kept me in remission for 5 years this month. I have never had a side effect from Humira and I find taking it is easy to do. I know the list of side effects for biologics is scary, but I came to realize that Humira might double the chance of cancer, but the chance of getting a cancer is 3 out of 100,000 people. The biologic doubles the chance (6 out of 100,000). That is still a 99,994 out of 100,000 chance of NOT getting the cancer. So it is a matter of perspective. And I had a 100% chance of Crohn's Disease, which needed to be put under control. So I went for the biologic. And I am very glad I did. Don't let the biologic scare you.
Agree
 
I have had many bowel obstructions. The first symptoms are pain and not passing any stool. Then, I usually vomit very forcefully and I don't feel relief after vomiting. At that point, I know that I have to go to the hospital ASAP.

For my serious bowel obstructions, I had an NG tube put down my nose for a few days, and the obstruction passed on its own. I haven't had a perforated bowel, but I know that if I keep getting obstructions, it could happen.
 
That's miserable, SteffieB! What is causing the obstructions? Is surgery a possibility?

I had a bunch of partial obstructions and thankfully never threw up or ended up with an NG tube. Feeling smooch better after a resection in July.
 
That's miserable, SteffieB! What is causing the obstructions? Is surgery a possibility?

I had a bunch of partial obstructions and thankfully never threw up or ended up with an NG tube. Feeling smooch better after a resection in July.
Did you have laparoscopic or open resection? I'm having open in a couple of weeks. Worrying about the NG tube as I had one 20 years ago and hated it.
 

dave13

Forum Monitor
Location
Maine
Did you have laparoscopic or open resection? I'm having open in a couple of weeks. Worrying about the NG tube as I had one 20 years ago and hated it.
I had a combination laparoscopic/open surgery for my resection. I hope it goes well for you.
 
Hi. I am a newbie to this support group. It looks amazing. I hope I'm posting in the right place. :confused:
I am 64 and have collagenous colitis and mastocytic enterocolitis. My d-predominant c.colitis went undiagnosed or treated for ~20 years. In 2013, I had uterine cancer. I'm ok. The surgery was enough to stop it.However, it caused pelvic floor issues. In May/2015 I had Altemeier perianal rectal prolapse surgery. It failed not too long after. In Sept/2016 I had laparoscopy ventral rectoplexy with no resection. It failed 5 days after the procedure. I am waiting for a bowel motility test. It is not available privately in the entire province.
Because of the long waits for surgery and the dysfunction associated with having a prolapse, my severe longterm diarrhea changed completely to severe constipation. I have had to do a 1.5 litre water enema virtually every day since June 2015. In October 2016 I had to resume the daily enemas. Unfortunately, the enemas probably make my bowel function much worse. All the prescribed laxatives, softeners, etc. were poorly tolerated. I had to take about a litre of polyethylene glycol with electrolytes daily for a while. They caused severe rectal bleeding and made the prolapse much worse.MOM makes me feel like fainting, and so on.
What is occurring for the last number of months before and after the last surgery is that I have what I suspect to be a bowel blockage, I had one in April 2016 and the full bowel prep of Golytely eventually cleared it. However, it took about 6 hours or so to start working. I almost had to go to emergency which is ~a 10 hour wait here. Your number probably gets called after you drop dead in triage.
Now the blockage is much worse than ever.I was supposed to stop all laxatives, enemas, etc while waiting for the motility test. However, I have been waiting almost 3 weeks.Now the constipation has probably turned into a blockage. I have terrible waves of abdominal pain that can last for hours. I can't sleep much. I had to start the enemas again. I had no choice. For the last few days I have had to do repeat water enemies every few hours all day. Sometimes each procedure can last for 2-3 hours. Last night I was up until 5 am.For the first few days, I could only evacuate one very hard small lump + a lot of blood. I read that if you have a severe blockage you should not take a laxative because you can cause a rupture. If I even drank water it did not go through my gut. I cannot eat solid food. Even pureed infant food won't go down.I feel that if I go to the ER they won't believe me, because I don't look sick.It might be a case of "liar, liar, pants on fire". I am normal weight and have good colour (thanks to rosacea). Also, I never throw up. I didn't even throw up with severe nausea during both pregnancies.

I live in Montreal, so I may have to wait a very long time for any kind of treatment. I had very long waits for surgery. Socialized medicine here is the worst imaginable despite our very high taxes. Plus, the government has decided to stop the subsidy to all private colonoscopy etc clinics by Jan.2017. If a doctor wants to keep his private clinic open he has to opt out of Medicare (RAMQ) thus jeopardizing his OR privileges, etc .Therefore all private clinics will close shortly. It's a nightmare here.

Bottom line (no pun intended) I don't know what is the smartest thing to do. I cannot reach the surgeon because, with my luck, he's under some witness protection plan.My GP is nice but probably would be of no help. I have tried virtually every med, food, etc known to man. Any suggestions would be greatly appreciated.
 
Hi. I am a newbie to this support group. It looks amazing. I hope I'm posting in the right place. :confused:
I am 64 and have collagenous colitis and mastocytic enterocolitis. My d-predominant c.colitis went undiagnosed or treated for ~20 years. In 2013, I had uterine cancer. I'm ok. The surgery was enough to stop it.However, it caused pelvic floor issues. In May/2015 I had Altemeier perianal rectal prolapse surgery. It failed not too long after. In Sept/2016 I had laparoscopy ventral rectoplexy with no resection. It failed 5 days after the procedure. I am waiting for a bowel motility test. It is not available privately in the entire province.
Because of the long waits for surgery and the dysfunction associated with having a prolapse, my severe longterm diarrhea changed completely to severe constipation. I have had to do a 1.5 litre water enema virtually every day since June 2015. In October 2016 I had to resume the daily enemas. Unfortunately, the enemas probably make my bowel function much worse. All the prescribed laxatives, softeners, etc. were poorly tolerated. I had to take about a litre of polyethylene glycol with electrolytes daily for a while. They caused severe rectal bleeding and made the prolapse much worse.MOM makes me feel like fainting, and so on.
What is occurring for the last number of months before and after the last surgery is that I have what I suspect to be a bowel blockage, I had one in April 2016 and the full bowel prep of Golytely eventually cleared it. However, it took about 6 hours or so to start working. I almost had to go to emergency which is ~a 10 hour wait here. Your number probably gets called after you drop dead in triage.
Now the blockage is much worse than ever.I was supposed to stop all laxatives, enemas, etc while waiting for the motility test. However, I have been waiting almost 3 weeks.Now the constipation has probably turned into a blockage. I have terrible waves of abdominal pain that can last for hours. I can't sleep much. I had to start the enemas again. I had no choice. For the last few days I have had to do repeat water enemies every few hours all day. Sometimes each procedure can last for 2-3 hours. Last night I was up until 5 am.For the first few days, I could only evacuate one very hard small lump + a lot of blood. I read that if you have a severe blockage you should not take a laxative because you can cause a rupture. If I even drank water it did not go through my gut. I cannot eat solid food. Even pureed infant food won't go down.I feel that if I go to the ER they won't believe me, because I don't look sick.It might be a case of "liar, liar, pants on fire". I am normal weight and have good colour (thanks to rosacea). Also, I never throw up. I didn't even throw up with severe nausea during both pregnancies.

I live in Montreal, so I may have to wait a very long time for any kind of treatment. I had very long waits for surgery. Socialized medicine here is the worst imaginable despite our very high taxes. Plus, the government has decided to stop the subsidy to all private colonoscopy etc clinics by Jan.2017. If a doctor wants to keep his private clinic open he has to opt out of Medicare (RAMQ) thus jeopardizing his OR privileges, etc .Therefore all private clinics will close shortly. It's a nightmare here.

Bottom line (no pun intended) I don't know what is the smartest thing to do. I cannot reach the surgeon because, with my luck, he's under some witness protection plan.My GP is nice but probably would be of no help. I have tried virtually every med, food, etc known to man. Any suggestions would be greatly appreciated.
I would still try ER.
 
I appreciate your rapid response. My question: why exactly. My abdomen at present is not rigid or painful. I am not throwing up. Why should they believe me?
 
So far I seem to be ok. Had some diluted apple juice and diluted ensure about an hour ago. Feeling kind of nauseous, but ensure and apple juice make me nauseous anyway.My husband is up at the country house for the weekend. I'm not well enough to go there.He says that if there is a crisis he will drive back. It's only about 60 miles away.He's a dentist, but is running out of empathy for me. I guess it's a form of self-preservation.
It's so kind of you to check up on me. Only my late mother would do that. She passed away in 2014 after having Alzheimers for 10 years.
 
Sorry to hear that. It's an awful disease. Both my parents had it at the same time. Thanks again for your thoughtfulness.
 
Sounds like you are having a very rough time, wnorm. Hope things are a little better today.

I always struggle with the "I don't look sick" "It's not that bad" or "they won't believe me" thoughts before I go to the hospital. I have had to go to the ER for a blockage before. They did an x-ray first to see if there was a blockage (there was) and then a CT scan to see the nature of the problem (inflammation vs. scarring). It was admitted and given IV steroids for a few days because it was due (partly) to inflammation.

You shouldn't have to live like this. If your doctors won't respond, then I think you should go to the ER.

Have you considered having your colon removed and getting an ostomy or j-pouch?
 
How did it go?
Surgery itself went well. Removed 11 cm of small bowel. Basically removed my old anastomosis and redid it. I had extensive adhesions so they removed them in order to get to the bowel.

I went home after 8 days but readmitted three days later with post op ileus. Had ng tube inserted in the ER which was probably the worst thing I have experienced! D/c 7 days later. Been home two weeks now and getting better each day. I see the surgeon this week and find out when I go back to work.

Wasn't pleasant but I'm crohns free now. Gastroenterologist wants to see me in 6 months for colpnoscopy to make sure no inflammation coming back.

Thanks for checking in :)
 
Surgery itself went well. Removed 11 cm of small bowel. Basically removed my old anastomosis and redid it. I had extensive adhesions so they removed them in order to get to the bowel.

I went home after 8 days but readmitted three days later with post op ileus. Had ng tube inserted in the ER which was probably the worst thing I have experienced! D/c 7 days later. Been home two weeks now and getting better each day. I see the surgeon this week and find out when I go back to work.

Wasn't pleasant but I'm crohns free now. Gastroenterologist wants to see me in 6 months for colpnoscopy to make sure no inflammation coming back.

Thanks for checking in :)
Hope you stay in remission for a long time.
 
Sounds like you are having a very rough time, wnorm. Hope things are a little better today.

I always struggle with the "I don't look sick" "It's not that bad" or "they won't believe me" thoughts before I go to the hospital. I have had to go to the ER for a blockage before. They did an x-ray first to see if there was a blockage (there was) and then a CT scan to see the nature of the problem (inflammation vs. scarring). It was admitted and given IV steroids for a few days because it was due (partly) to inflammation.

You shouldn't have to live like this. If your doctors won't respond, then I think you should go to the ER.

Have you considered having your colon removed and getting an ostomy or j-pouch?
Thanks for your thoughtfulness. I am actually in the ER now.I've been here for about 2 hours or so. Had a bad test. Waiting for the rest.Wish me good luck getting some treatment before the cows come home.
 
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