Living with a stricture

What is it like to live with a stricture that is more scar tissue than inflammation? I have a scar tissue based stricture in the terminal ileum. I think that is what is making me feel some nausea, stomach pain, hardness and sort of bloaty in my right lower quadrant (TI). The gas and digested food ends up there getting blocked, and if I press on it, it hurts and gurgles and I feel stuff moving through. My overall crohn's seems to be well controlled on humira, but the stricture remains, and I think its causing problems. Has anyone else experienced something similar?

Adam1971 said:

What is it like to live with a stricture that is more scar tissue than inflammation? I have a scar tissue based stricture in the terminal ileum. I think that is what is making me feel some nausea, stomach pain, hardness and sort of bloaty in my right lower quadrant (TI). The gas and digested food ends up there getting blocked, and if I press on it, it hurts and gurgles and I feel stuff moving through. My overall crohn's seems to be well controlled on humira, but the stricture remains, and I think its causing problems. Has anyone else experienced something similar?

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I have pretty much the same thing and have had it for quite awhile. I'm having surgery this Thursday to have it removed.

All I can say is that it is miserable. Constant diarrhea and near blockage many times. I took me awhile and several tests to finally figure out what was going on. I use to have problems if I ate french fries, vegetables and other things but could never figure out what the deal was.

The surgeon said medicine will not do anything for a stricture that is scarred like mine. I guess that's why humira and other meds didn't do much for me!

I would look into getting surgery sometime as a stricture does have a risk of turning into an emergency situation if you have complete obstruction.

Adam I am sorry to say but it looks like you will be joining Occupy and I (Along with thousands of others) with a resection. You can fully blame the Humira for the worsening of your stricture, but in a good way as Humira is doing something no other medication has done to date which is heal your open wounds in your stomach, so I think it's a positive thing. I was suffering from obstruction symptoms due to a stricture for a few years without knowing it, I don't know what I was thinking but it never registered (Denial) until it got so bad that my food was backing up and causing me pains on the left side of my stomach which was due to the blockage causing my intestines to distend. I would be constipated for 3 days then have terrible D and this cycle continued along with the pain, but I was in remission as well. If you have taken the leap in trying Humira I don't think anything will really phase you now. I will say the surgery I had in July was the hardest/best thing I have done in my life. If you need support drop me a line as I just went through exactly this so it's still fresh in my mind as well. When the disease gets to this point it gets really unsettling. Like Occupy said if you wait and it gets worse it could turn into an emergency situation which is never good, those are the stories you hear of people waking up with temporary stomas or more intestines removed than they are ok with. In the mean time switch to the low residue diet and eat smaller meals more frequently during the day. Good luck and keep us updated!

Thanks for the replies, thermo and occupy. I was afraid that resection was probably where I was headed, sooner or later. I was wondering if these symptoms indeed sounded like more of the physical barrier and complications caused by the narrowing/thickening, but not of active inflammation? I almost feel as shitty as when I was first diagnosed in March of this year. I just have this persistent gassy, unsettled feeling in my guts, bulges and gurgles in the lower right area of my belly (TI I assume), and often a lot of tenderness there, too. My bm's have been mostly infrequent and constipated, alternating with loose, leaky stools with hints of mucus. No blood, no fever, no vomiting. Some nausea, and lots of tiredness, especially after I eat. Sometimes the humira makes me feel great, but even on 1 shot per week (instead of every 2 weeks), that seems to be getting less often.

Any thoughts are welcome and helpful. Thanks.

Adam

Adam1971 said:

Thanks for the replies, thermo and occupy. I was afraid that resection was probably where I was headed, sooner or later. I was wondering if these symptoms indeed sounded like more of the physical barrier and complications caused by the narrowing/thickening, but not of active inflammation? I almost feel as shitty as when I was first diagnosed in March of this year. I just have this persistent gassy, unsettled feeling in my guts, bulges and gurgles in the lower right area of my belly (TI I assume), and often a lot of tenderness there, too. My bm's have been mostly infrequent and constipated, alternating with loose, leaky stools with hints of mucus. No blood, no fever, no vomiting. Some nausea, and lots of tiredness, especially after I eat. Sometimes the humira makes me feel great, but even on 1 shot per week (instead of every 2 weeks), that seems to be getting less often.

Any thoughts are welcome and helpful. Thanks.

Adam

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More than likely, they will want to do a lot of tests before surgery. I had a colonoscopy, endocscopy and a barium x-ray. The barium x-ray is what finally revealed the stricture. If you want to save money and they do insist on tests it might be possible for you to only do the barium xray. But, I guess it varies from place to place.

Before all this they had me on a bunch of different meds, and nothing worked.

Have you had any tests done?

It's hard to say if the current stricturing is a sign of active inflammation or healed inflammation. I will give you my example to try and help you determine what yours is as it depends on what your disease has been doing. I may have been having these obstruction symptoms for years now but not in any form as bad as what required me to have surgery. How I got there was I started Humira in Sep and I was doing great, gaining weight and in remission. Then in March I had a mild flare in which I went on steroids. It was the quickest flare I have had and within a month I was in remission tapering off steroids until I got to 15 mg and found that I couldn't get off the steroids and was steroid dependent. The most recent flare caused more stricturing due to the inflammation. But even though I was in 'remission' after they removed some intestines and tested it they found at its worse it went from 4cm to 1.5 cm in diameter due to narrowing and that there was still a small part that was flaring even though I was in remission. So it really depends usually the CT scans can tell active narrowing due to inflammation or stricturing. If you are up for more tests before going under the knife ask for a fluoroscopy and get it done at a reputable hospital as its really easy to mess that test up, a good fluoroscopy will give everyone as close to a picture of whats going on inside you as possible. Have you gotten your SED rate done recently to see if your inflammation levels are elevated?

Well, I finally called the dr's office about these symptoms. I hate doing it- I feel like a nag, a wuss, and defeated by this f'ing disease. I have kind of retreated to a mostly liquid, super low res diet. I am still feeling a little worse each day . As far as tests. I had ct enterography in April, and sed rate in June. Sed rate was slightly higher than normal (18ml/hour). The cte showed a bit of improvement in stricture since beginning humira, but it was still there. That is why I believe it is now a scar tissue type of stricture.

Occupy-hope your resection went well. Thinking of you.

Adam

Adam1971 said:

Well, I finally called the dr's office about these symptoms. I hate doing it- I feel like a nag, a wuss, and defeated by this f'ing disease.

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I use to feel exactly like this too until I checked myself into the hospital 4 months ago with Black tar stools and I didn't want to bother my doctor so I never called him. When he found out he threatened to drop me as a patient if I ever neglected to call him when admitting myself to the ER again lol. Good GI doctors want you to call them as most of the stuff can be fixed if they find out about it when it's happening and they get really possessive of their patients. They don't treat Crohns patients like their normal IBS patients we are why they had to go to school for so many years and learn so much and quite frankly pay their bills so don't feel bad.

Well there might be a silver lining for you, with your SED rate so high your obstruction symptoms might be inflammation instead of stricturing I mean your stricture is still there and will get worse but if you can get your inflammation under control you might be able to push off surgery for a little bit longer. How long have you had these obstruction symptoms? What did your doctor say? The one thing to watch out for is if you are already having these symptoms you are getting pretty narrow, when your flare stops Humira might do the same thing it did to me and create even more scar tissue that requires surgery. Have you taken steroids?

I have had these symptoms for about 10 days, though honestly, I think I have them off and on since before being diagnosed. Humira has certainly helped, but lately, its gone down hill. I was on entocort after first getting diagnosed. Then, I was hospitalized with c diff colitis about a month later (late April), which is when I was put on prednisone for a short time -about 2-3 weeks. My doc does not like prednisone for long duration or high doses. I never did hear back from the doctor today. I was not reachable by phone part of the day and they did not leave a message.

Yeah steroids are not the best and certainly not for long term but there is nothing that beats them when it comes to flares, and when you need quick improvement they will work great. Yeah I didn't know what the obstruction symptoms felt like until my GI pointed it out to me but I was suffering from them for possibly years. Let me know what the doctor says I seriously suggest a fluoroscopy because that is really going to show if you need surgery or not. I am just going to say again how surgery was the best but most difficult thing I have done in my life. You will never be the same but sitting here 5 weeks post operation I wouldn't change my decision for anything. If you put it in prospective you most likely have had this your entire life and it has just now gotten bad enough over all of these years to cause a 'diagnosis' So it stands to reason that if you get the bad intestines cut out you could go another 20-40 years without a big enough problem, and by then there will be a cure. I am not trying to push surgery only get your mind ready for the possibility, this year has been a roller coaster for me getting over this idea in my head has almost been as bad as recovering physically. I still hope a dose of steroids with the Humira will work for you, or whatever your doctor recommends, keep us updated!

I found this in my travels today, it has a lot of numbers and percentages but it is definitely worth the read.

http://www.ncbi.nlm.nih.gov/pubmed/9202538

So, my doctor suggested that I add a dose or two of miralax to my diet for a few days to see if the symptoms resolve. I assume that they must think my symptoms are being caused at least in part by some unresolved constipation from such a low fiber diet. If my symptoms do not improve, they are talking about having me do an "upper gi series with small bowel follow through". I am curious how this is different from the "cte" I had done back in April. I have been doing a little reading to figure this out, but the language is so similar that I do not know. I guess it means they want more info about the physical and functional dimensions of my small intestines to see what might be going on. I am confused and bit scared about it all.

People will disagree but the easiest way to comprehend the difference is to think of it like this:

A CTE is a picture that they can move through and view separate areas in a spliced view that cuts away layers and layers allowing them to view complex areas that traditional x rays cannot penetrate.

A SBFT ( Fluoroscopy) is an x ray taken every 15 minutes which is like stop animation combine these pictures together and they form a 'TV' view of barium flowing through your intestines.

Combined it will show them everything they need to know as far as the magnitude of the stricture, any obstructions/narrowing and most important with the SBFT any fistulas as that will show the surgeon what he is going into so he can prepare. Make sure you get it done at a good place as it seems smaller facilities claim they can SBFT but it is no way in comparison to an actual Fluoroscope machine. I will be honest they suck really bad, only because you will be there for as long as it takes for the barium to move through your stomach. The first time was 2 hours for me (actual time not including waiting time) and the second was 30 minutes because I was so messed up right before surgery my stomach just flushed the barium in 15 minutes. Just as a reference this was exactly what I did before my surgery and it sounds like thats what they are prepping you for, but you know that already. My best advice is to listen to the doctor and let it ride don't fight just make your appointments as needed what is done is done you cant go back in time, if the Miralax works and gives you time thats great! If not it's not the end of the road but the start of another chapter. Did you read that link I posted? Let us know if the Miralax starts working for you.

Thanks for the explanation! That helps a lot actually. I did read the link- it was encouraging. So far, super low res diet and miralax are making things a bit better, but not a lot. Time will tell.

Hey Adam1971, hope you're feeling better! I am in the same boat as you I think. I have a narrowing in my TI that was found with a CTE in June. I've been having tonnes of grumbling, bloating and gas for months up until I started getting partial obstructions almost every few days in May!

The symptoms all started shortly after a bad flare last summer and starting Remicade in August which is said to do the same thing as Humira in terms of healing/scar tissue. Do you have diarrhea? I didn't for the longest time but for the past few weeks I've noticed it has come back quite regularly for me. I haven't had any obstructions in that time though which is weird too considering I went from having them almost daily! My bloodwork all comes back completely normal, no increased inflammation markers, increased white cell count or low iron/red blood cell count. I can say that my bloodwork has never been so normal, I can only think it's the Remicade doing it's job! I think my Crohn's is in remission and its more scar tissue causing me the problems I'm having right now based on these results and I don't really feel like I'm flaring...it's different.

I'm going for a colonoscopy tomorrow (yay) so my doctor can see how narrow it is. He says a surgeon won't consider surgery without the pics from it so I gotta do it either way. I don't know if he's convinced it's scar tissue vs inflammation so hopefully the test shows what's happening! He says if it's 'pinhole' then he'll send me to the surgeon. I am at the point though where I want it out regardlesss. I don't want to live with the possibility of a full obstruction = emergency surgery with possible bag etc at any time. I'd rather deal with it when I'm relatively healthy and in the best possible circumstances...for some reason it's a bit of a struggle to convince my doctor of this!! :ybatty:

Sorry to hear you are suffering, I do know the pain and uncomfortable feeling you have cause I just under went a resection for the same thing in the same spot. I have had a few resections due to thickening( scar tissue ) this time it became a full obstruction, so please just be careful, know the signs and act on them as soon as something feels different.
Take care and I hope everything works out for you.

Adam - After they do the the scan and get a better look, ask them if this can be resolved by doing a strictureplasty, instead of a resection. Nothing is cut out. They just cut along the stricture lengthwise, then sew it up vertically, thereby widening the stricture.

Tenacity said:

Adam - After they do the the scan and get a better look, ask them if this can be resolved by doing a strictureplasty, instead of a resection. Nothing is cut out. They just cut along the stricture lengthwise, then sew it up vertically, thereby widening the stricture.

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This is a very good question to ask the surgeon during the consultation. Here is what mine said about this when my GI and I tried to force him into agreeing to a stricturplasty before opening me up. Due to the length of time that I have had the disease until my first surgery the odds are that I will go a decent amount of time before being at the stage of needing surgery again. Since I will be on Humira as a maintenance drug after the surgery this would theoretically keep me off the table even longer as for 26 years of my disease I used no maintenance and only treated with steroids when flaring. The other thing he advised was that since he will be in there anyways it makes no sense in keeping an extremely inflamed/diseased/scared segment of bowel as it increases cancer risk and there is effectively zero absorption going on so why keep it? Strictureplasty is a great idea in theory but when you have had the disease for so long be prepared for the surgeon to say it's probably going to be a resection.

I really liked my surgeon after reading the surgery report he ran into some major issues in there and he still attempted to do a strictureplasty for me, but it ended up not being pliable due to so much scarring. But I did appreciate the attempt, I only asked him two things going into the surgery. Try to save as much bowel as you can don't get scissor happy. I didn't want to wake up with a stoma. Not that this would be exceptionally hard from what I have had to deal with but I told him psychologically I am not ready for that. The nurses laughed at me because I was messed up when I woke up and I was having some major complications like an elevated heart rate and major pain but the first thing I asked them was “Do I have a stoma?”

Good luck on Wednesday Adam, I would recommend asking the hospital for a copy of at least the lab writeup. Its usually available the same day or the next, I would like to hear what they found so you can prep for what the doctor is going to talk about, stay positive it wont help getting discouraged your overall prognosis is good this is temporary, keep us updated.

bumble_bee said:

I am at the point though where I want it out regardlesss. I don't want to live with the possibility of a full obstruction = emergency surgery with possible bag etc at any time. I'd rather deal with it when I'm relatively healthy and in the best possible circumstances...for some reason it's a bit of a struggle to convince my doctor of this!! :ybatty:

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I strongly agree with this, it is important to weight your options but understand that waiting too long will only delay the inevitable and only expose you to higher risks of complications when in reality the odds are you will have surgery it's only a matter of time. Surgery is scary stuff and it is in no means easy but most people will tell you they wish they had not waited so long (Myself included)

Thanks for sharing this Adam and for everyone else's wise words. I had a second TI resection last year but probs with scarring at the anastomoses site mean I have a stricture that balloon dilations haven't improved. I have an appt with my surgeon on 3rd Sept- I don't relish the thought of more surgery but I suspect there isn't an alternative rather than wait for a horrible obstruction.

My only concern is that things don't scar up so enormously and quickly AGAIN but my surgeon tells me I am unusual...!

Good luck Adam and bumblebee - hope there are positive steps forward for you both in the near future

Emma

Good luck to you as well Emma, maintain positive thoughts and we are here if you need to chat. Adam good luck tomorrow let us know.

This Thur will be 2 weeks since my resection. I've still got a ways to go before a full recovery... if you do get a resection I started a separate thread on tips/advice to make your surgery go the best.

An open surgery is much more painful than laparoscopic... so if your surgeon says laparoscopic is an option for you, pick that option.

Here's the thread I started

http://www.crohnsforum.com/showthread.php?t=40336

How did things go this week Adam1971?

Hi there...sorry for the delayed response. Well, since the mre, I have also had a colonoscopy, which is great because the doc confirmed with his own eyes that humira has essentially put me in remission, but the scarring from the inflammation has caused a stricture that won't improve. So, the good news- not adding azathioprine to my meds. However, it looks like a resection is in my near future. The mre and the scope confirm that the symptoms I have been having are all about the partial obstructions caused by the stricture.

Adam

I would honestly be happy that Humira put you in remission which means theres a treatment that works for you. I am as of tomorrow, 8 weeks out from surgery and starting to feel like I never even went through what I did and better than I ever have. The mind is great at forgetting horrible events. I recommend getting as much exercise as you can, go on Short Term Disability or FMLA for a full 4-6 weeks (As long as you can) have the NG tube and catheter in 24/7 for the first 3 days, get Ativan in the hospital so you can sleep, chew gum several times a day and have someone take care of you for the first 2-3 weeks. This combo allowed me to bounce back quickly. It's still going to be a tough road and you will never prepare yourself for what it's really like, so just focus on positives and don't take things too fast. Let us all know how things progress after you speak with your surgeon, has your doctor recommended one yet?

In other stricture news.... I am due to have more surgery on 8th Oct to "revise my anastomosis' where I have the stricture that just wants to close. My surgeon seems confident he can improve things so I am keeping my fingers crossed that I will eventually be able to get away from a low res diet and the looming threat of obstructions! No chance of laproscopic surgery though (too many previous ops) so I will be loading up my Kindle and resting up for a steady recovery period...

Hi Emma

Thanks for your post. When did you have your surgery, and what do you think is causing the anastomosis to close up on you?

Just curious

Hi Adam

Had a resection in June 2011 (following an original ileo caecal resection in 1994)- then had 2 hospital admissions with obstructions in August and Oct 11 and several near misses since.

Tests show no active disease (hurrah!) so the stricture has been put down to excessive scar tissue- everyone seems to think this is pretty unusual in so short a time. My surgeon is planning to bypass the stricture by creating another route thro' (it all made sense when he drew a picture for me!)- hopefully trying something different will bring a better result.

Part of me is just intrigued to see what they find when they operate. I am only on Pentasa and my Crohns is v good in the grand scheme of things so this is all a bit odd!

Hope all goes well for you and I will post if I have anything exciting to report after the surgery ...

Emma

Hi again. What kind of symptoms do you get when you are having a partial blockage starting up?

Hi,

For me, it usually comes on a few hours after eating and I have pain in a v specific spot (where the stricture is), it comes in waves - I tend to feel bloated and nauseous and no gas passes. I find the only thing to ease the pain is a hot water bottle. If it is not too bad it subsides after a few hours and I am left feeling v sore with v disturbed and frequent BMs. If it doesn't subside the pain gets unbearable and I start to vomit violently and faint- at that point I have usually made it to Accident and Emergency...

Is this similar to your experience?

Emma