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Crohn's Disease Forum » Surgery » Strictures & Obstructions » Intestinal Blockage / Obstruction Support Group


 
01-27-2015, 01:29 AM   #361
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Oh my Mad Bagger, I can't imagine. You must be an absolute trooper to go through 19 surgeries. I have had my share of stuff to deal with, but nothing like that. I got call today and have apt with surgeon on Monday, so am hoping for some answers. It is so hard not to get frustrated. Thanks for your comments. This forum is so helpful even if just to know we aren't alone in the world!! Take care of yourself.
Hope your appointment went well today!! I spent the day at Northwestern hospital in Chicago, my Mom got her 91st chemo, so she's where I get my inspiration & we both are warriors. Its so nice to be on this forum & to hear other stories & similar problems. My biggest problem is finding a local GI, having a hard time finding a Dr to take my complicated case, but my old employer Dr Johnson just referred me to a friend of his that loves complicated cases. My anxiety is through the roof!
01-27-2015, 01:33 AM   #362
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Does anyone else have eye issues (uveitis) with their Crohn's disesse? This is a newer symptom for me & don't know much about this, wondering if its another flare?
01-27-2015, 01:57 AM   #363
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I have not had uveitis but my ophthalmologist is on the lookout for it because I have Crohn's.
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01-27-2015, 07:18 AM   #364
Ribo
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How often do most of you have SBO flare? I've had about 5 in last 5 months. But I feel pretty good between bouts. I'm trying to decide if it's time to have surgery discussion with my md. I am maxed out on maintenance Meds, so can't really adjust those.
Any input would be appreciated.
I was hospitalized something like 15 times in a two year period when I finally met with a surgeon. About 9 of those were bowel obstructions, others were complications of Crohn's plus two bouts with pneumonia brought on by my med regimen at the time.

My resection kicked me into remission and I've felt fantastic for the past six months. I have no idea why I waited so ong, except that my old GI was apparently an idiot.

My surgeon, who I would recommend to anyone, came into the exam room and said something along the lines of "15 hospitalizations? That's crazy." he scheduled surgery the following week and, though the recovery was rough the first few days, it changed my life. I know that won't apply to everyone and every case, but if I had it to do over again, after the third obstruction I'd have been consulting with a colorectal surgeon.

At the very least, if you've had five true obstructions in five months, you should be seeking a second opinion.
01-27-2015, 07:30 AM   #365
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You can ask anything you wish.

I wasn't able to function. I lost a lot of weight. Had to go on a no fiber diet. My surgery was in May two years ago. After surgery I went on imuran in an attempt to stop a flare. Unfortunately it wasn't enough and I started remicade last September.

When I was first diagnosed none of the meds work. I eventually got into remission after surgery. At that point I stupidly declared myself done with doctors and meds. I was extremely lucky to have a long 20 year remission. I would NEVER recommend that. I started flaring a few years back and have been since then.
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01-27-2015, 07:32 AM   #366
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Thanks DJW.
A couple questions, if I may. Were you still functioning when you were getting them weekly? (Ie eating, holding weight, working) How long ago was your surgery? You doing well since then? Were you able to decrease Meds after surgery?
I should have quoted your post. The answer is above.
01-27-2015, 09:21 AM   #367
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Thank you for all your responses.
I have had one resection about 13 years ago, and it was very apparent that I needed it. Now, I'm on Remicade, Lialda, Budesonide, omeprazole and supplements; I also eat a Low inflammation Paleo diet. So my partial obstructions seem purely mechanical (not inflammatory). I have only been hospitalized for one such episode in the past 3 years. Usually (and I know this sounds crazy) when it starts to onset, I make myself throw up as much as possible, and then I lay upside down on an inversion table for about 10 min and it is very painful, but the anti-gravity seems to loosen things up. I envision it doing kind of what an ng tube does as far as decreasing the pressure where the clog is and then letting stuff start to slide through.
Problem is, it just seems to be happening more frequently....
04-07-2015, 03:19 PM   #368
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Does anyone else have eye issues (uveitis) with their Crohn's disesse? This is a newer symptom for me & don't know much about this, wondering if its another flare?
I had uveitis as an initial symptom of Crohn's...but mostly because my Crohn's disease was undiagnosed for three years. The uveitis was HORRIBLE though...very painful. I hope you recovered well...topical steroids work wonders!

I also had a flare up of my uveitis when I first obstructed....fun stuff.
04-09-2015, 07:55 AM   #369
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I figured I'd add my blockage stories here. I've had one instance of ileus and one blockage of the small intestine.

The ileus was a complication of surgery. I felt quite well for a couple of days after the surgery. Then I started getting stomach pain and nausea, and although I'd been eating since the day I had the surgery, my stoma had not yet started working. My surgeon was away sick, and the doctor covering for him put a camera scope into my stoma and a catheta and decided that my digestive system was just slow to wake up and made me drink some disgusting laxative solution. I wasn't vomitting so he missed the ileus diagnosis, as vomitting is a key feature in most cases. I was in pain, I'd had no painkillers since opiates slow the bowel. I was in agony after the laxative, there was still nothing coming out of my stoma, and a nurse looked at my stomach and worked out I had ileus because it was so massively swollen. I'd also not been able to pee for two days (I have bladder problems anyway). An X-ray confirmed the diagnosis. They gave me diazepam to relax my abdominal muscles, but as soon as they'd given me an NG tube and aspirated all the bile from my stomach, the pain relieved considerably. I was told to chew gum to stimulate my digestive system, and I could have liquids and a little food. The ileus resolved after around ten days.

The small intesine blockage I had was the result of very complicated things going on, so I'll skip the causes and go straight to the symptoms. For weeks before it happened, I couldn't face eating. I always have a very poor appetite, but usually there's something I'll have a craving for. Then one day, every time something came out of my stoma, it caused a sharp, pinching sensation. I thought my stoma may be a bit blocked as I had no output, but then in the afternoon it produced some, so I figured it was fine. The next morning my stomach felt ok, no more pinching, and I ate breakfast. Then mid-morning my stomach just started hurting and I felt so bloated and swollen and just had this knowkedge that something was very wrong. We went to A&E and I was admitted immediately. After that came NG aspiration, x-rays, bowel perforation, emergency surgery, and a whole load of complications.
05-23-2015, 01:52 PM   #370
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stricture of ileum found 25 yrs ago. crohns
put on b12 injections 25 yrs ago
no other meds, no surgeries
for all of these years have put up with obstruction pain 1-2x a yr
no complications, no fistulas,
have managed diarrhea all these years by watching what when and how much I eat and put up with some of the inconvenience as just don't like meds

I am really tired of the pain.. even if its only 1x or two x a year, as I get older, 59, I am just tired of it.... stopped going to er years ago when they would not give me anything for pain and said come back if it gets worse, like it could get any worse... you all seem to understand the pain.....

anyways, last fall saw a GI Dr..said he only did meds and would put me on humira or Remicade... I said no.... for only 1 or 2 incidents a yr did not want to go to such extreme
meds, he said to find another dr

well, just finished another pain episode... have convinced myself ok, next time will go to the er...

but.... knowing what you all know about the different meds, and what you all seem to be taking, nothing seems to stop the obstructions

I have thought about just cutting out the stricture, but sounds like the adhesion's from the surgery just provide another source for an obstruction.

I just don't see meds being of help in dealing with only one or two episodes a year ... maybe you all feel and think differently?

thanks in advance for your inputs
05-23-2015, 02:24 PM   #371
Grant
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Hi chirpy, IMO you've a time bomb inside you waiting to go off in the way of possible perforation which is very very serious. I'm not sure what advice anyone can offer you because you dont like meds. I can only say you need meds to try & stop the vicious cycle. If it was me I'd be speaking urgently to a Gastro Specialist.
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05-23-2015, 03:26 PM   #372
chirpy
 
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understand about the time bomb... but....
Have your meds stopped or prevented your obstructions?
05-23-2015, 04:34 PM   #373
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Chirpy, my obstructions have not magically disappeared, but after 5 in one year that required hospitalizations and a trip to the Mayo Clinic, I started taking Humira. I was fine for 4 years, but it has stopped working and I had another obstruction. Now I'm on Imuran and hoping it works. My sister died at age 44 from an obstruction that perforated. Please don't take that chance
05-23-2015, 05:16 PM   #374
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After 10 or so years of obstructions, some of which required a trip to the ER or a hospital stay I had the strictures removed last September. I'm now on Humira which is supposed to prevent any further strictures from forming, by preventing inflammation which in turn creates scar tissue which causes the obstructions.
Like you, I wasn't on medication before the op but that was because I was misdiagnosed as having UC rather than Crohn's. Now we know what it really is, the aim is to prevent any further issues with medication.

I cannot tell you how great it feels to not have to worry about getting an obstruction with every suspect bite of food!
No idea how long it will last of course but for the time being it's fantastic. Maybe that is the way forward for you too? Or in your case if the strictures are due to inflammation rather than scar tissue you may even get away without a resection first. The only way to find out is to try the medication....
05-24-2015, 04:26 AM   #375
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Chirpy, my obstructions have not magically disappeared, but after 5 in one year that required hospitalizations and a trip to the Mayo Clinic, I started taking Humira. I was fine for 4 years, but it has stopped working and I had another obstruction. Now I'm on Imuran and hoping it works. My sister died at age 44 from an obstruction that perforated. Please don't take that chance
I'm very sorry for your loss, peluchde.

I also had a perforation result from a blockage, it was the most serious medical problem I've ever had. Is there a specific reason you want to avoid medications, chirpy? Is there another treatment option you have in mind?
05-24-2015, 06:16 AM   #376
Grant
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understand about the time bomb... but....
Have your meds stopped or prevented your obstructions?
I've been on Humira since Dec.2010, now the problem for me was I had surgery in August 10 & by the end of Sept 2010 my CD was reoccurring. It took until Dec that year to get me scoped & then onto Humira. Damage already done sadly & a further surgery was required for another stricture in May 2012. Since then its been Humira all the way until this year when I had 3 infections in the space of 4 months & for a month of that I couldn't inject Humira. Well guess what, my CD came roaring back & sadly I think I've another stricture forming. Due to be scoped soon.
So Humira does work & work well. You mustn't leave it chirpy, it could cost you your life.
Please seek help
Best Wishes
Grant
05-24-2015, 08:13 AM   #377
chirpy
 
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thanks all for your responses.
Peluchde, so sorry for the loss of your sister.

The side effects of drugs scare me. My symptoms are mild, I have had the same stricture for ever, no changes, so if the side effects of the drug appear to be worse than my symptoms, and they don't stop obstructions, why change?

My only complaint is the pain 1-2 x a year, why go thru months of drug use for only these not so often episodes.

In my past discussion with Drs about we could try this or that drug, it just gives me the impression drugs is where they make the money and they have no idea what is going to work, sort of a trial and error type approach.

If my symptoms and inflammation were more frequent and I were having complications, I would be more willing...but my decision would still depend on, are the drugs going to give me more relief or more grief?

thanks again for your inputs... now that the recent episode is over, it's sort of out of mind... will worry about it next time :-) but I am pretty convinced the next time I will go to the ER ... so that is a step for me

can you tell I don't like Drs, hospitals, ...smell of alcohol :-)

thanks again to all
05-24-2015, 03:07 PM   #378
Grant
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But they do work chirpy. And this could end very badly for you & your loved ones.
Is it worth risking your life over?
Rgds
Grant
05-24-2015, 06:31 PM   #379
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Crohn's isn't a cut and dry disease. A drug that works for one person, may not work for the next. Crohn's has a mind of its own, and can be very stubborn. However, once you find the right combination of medicine, diet, and life style - you shouldn't have any obstructions. The more those episodes happen, the weaker that area is getting. Don't wait.

Also, yes, Crohn's is expensive. The procedures to check up on it and the medicines. But both are needed. I have been very up front with my doctors about not being able to afford some of the medicines. I was sent home with nearly three months of free samples, to see if they helped and give me time to change my insurance.

My insurance just sent a letter that it no accepts manufacture coupons for maintained medicines. (Aka... All of my Crohn's medicines!) I brought that to the doctor who was livid. I assure you, they don't like "the system" either.

Unfortunately, there aren't enough of us needing these medicines to make it worth pharmaceutical companies' time and energy to make cheaper medicines. And, those that own the rights know they can charge whatever they want because we will pay it - because we want to survive and have a decent quality of life.


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05-24-2015, 10:11 PM   #380
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Hi, chirpy. Strange about your doc. My history is similar to yours. No fistulas or anything like that, just strictures of the ileum. Not too aggressive, either. Slow progression for me, also, and about the same number of obstructions/year.

I wouldn't say I have the greatest doc in the world. Pretty standard fare, mainstream meds, tests, etc. Still, last time I saw him, we went over this very question. When I sat back and considered all the circumstances of my case—MRIs, blood work, infrequency and mild nature of obstructions, etc.—and decided not to go the biologics route, but to watch and wait, he said, "I don't think any doctor in my position could fault that decision." Interesting that his response would be so different from your doc's.

It's my body, you know. And there's no *one* progression for this disease. Some people have mild strictures for many, many years. In some ways, the longer you can go the better. At least I think so. Then when you finally succumb to the Humira (or the surgery), you really benefit from it.

Big caveat here, though. I'm allowing my doctor to test me regularly and to watch for signs of worsening/spreading/extreme dilating of the proximal ileum/and so on. I don't intend to let myself get to the point where I seriously risk a rupture. Well, of course it's still a risk. Heck, it's a risk even for severely sick people who are on drugs. But I'm not yet severely sick. (I should note, I have taken Apriso (mesalamine), which is a very mild topical drug with hardly any systemic uptake, but it seemed to have no effect.)

Hard choice to make. But the idea that you're bound to have *severe* complications and soon(!) if you don't take the strongest drug out there *right now* just doesn't hold up, IMO. Could be true. Might not be true.

But then... I re-read your post, and I think, well, maybe you *are* at that point. You have put off meds a *long* time. Argh! Tough choices! Crohn's does seem to be about those (tough choices) if it's about anything!

Best premises to you in working through your difficulties, chirpy. Let us know what you decide to do. Will be interesting to see how it goes for you.
05-28-2015, 01:35 AM   #381
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Does anyone else have eye issues (uveitis) with their Crohn's disesse? This is a newer symptom for me & don't know much about this, wondering if its another flare?
I've been experiencing dry eye and inflammation. Was put on cortisone eye drops for a week and Bion eye drops 4x/day for a week after. Helped a lot.
06-20-2015, 09:24 AM   #382
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Hi all,

I wasn't sure exactly where to post this question but here goes:

Has anyone ever had an anastomotic stricture dilated and then injected with steroids? My ileorectal anastomotic stricture was narrowing and to avoid surgery we elected to dilate it and also do 4 steroid injections into the scar tissue with intent to prolong the benefits.

In reality I'm totally miserable and way worse than before dilating. Dilating in the past without the injection has always worked great.

Has anyone experienced something similar?
06-23-2015, 05:09 PM   #383
DougUte
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I have not heard of a steroid injection into the scar tissue. I would do everything I could to avoid surgery. If your GI is OK with it I would probably do it.
06-23-2015, 11:03 PM   #384
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Greetings,

I hope adding onto the end of this thread is OK. (This is my second post; if it’s in the wrong place, please move it.)

I have had hundreds of what i call “cramping events”, which, from having read this thread (i did read it all) seem to be a mix of partial blockages with a few full blockages. I am very used to the pulsing, cycling cramping pains which go along with peristalsis (and the cold sweats and vomiting with the full blocks).

At the end of May this year, i had a new abdominal pain which i have never had before. In the early morning, the pain suddenly engaged, like turning on a light switch, at a level on the pain scale of about 5. It did not vary for about 7 hours. It felt like someone was grabbing my wrist hard, with the intention of breaking it…and holding it…and holding it…and holding it. As suddenly as it started, it stopped. Zero intestinal gurgling/movement, before and after, for hours.

Several hours after it thankfully stopped, there was some restricted gurgling and movement, but less severe than i’ve had with other blockages. Nothing like it since. I do not have a fever nor any other issues that would indicate that something has perforated or fissured or whatever else.

Most people would have gone to the emergency room. If you read My Story (entitled My tl;dr Novel), you will understand why i did not go to the E.R. I tried to go into the local mountains to die, but it was too painful to try to get into clothes, so i took two Aleve (I know that’s forbidden for IBD people, but my PCP knows and that’s what i do. Go read My Story), which dropped the pain from 5 down to 1-2 once it took effect. I called my mother, who lives across town. She was giving me a shoulder massage when the pain suddenly ceased.

Because i felt the pain across my abdomen in the same area where i feel my Crohn’s cramps, i’m thinking they’re related, but i have no idea why this one would be so wholly different.

Has anyone with any IBD ever had a pain like this? If so, did you find out what it was?

Thank you.

Best Wishes,
))Sonic((

*** Update ***
Saw my PCP in late June, a month after the event. I described it to him as above. He didn’t seem too concerned about it, to my amazement. Still nothing like it since. I’m surprised that out of everyone here, no one else reports having experienced something similar. But then, we seem to be dealing with a family of diseases, with everyone’s experience being different, so maybe i ought not to be surprised that i’m the only one.

Last edited by Sonic Purity; 07-07-2015 at 11:40 AM. Reason: Additional information.
07-07-2015, 02:34 AM   #385
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hi guys, i need some advice...
From a span of 3 months i have been having severe obstruction i have had like 6 obstruction till today. i did not have any problem with obstruction but now i am finding really hard to control it. After recovering from one obstruction its a matter of 10 days when the next one strikes. during my first and second obstruction i was administered antibiotics to clear the obstruction but when the same thing repeated my GI did balloon dilation. But this too dint stop my obstruction from reoccurring. I dint go to GI since then, now whenever i have obstruction i dont eat anything solid for two days and then it gets cleared. The same story is been repeating from the past 3 months. i am really confused and irritated. i am not understanding how can i get it in control. My colonoscopy shows that my colon is good except one small portion which is creating complications. I have already undergone a surgery 3 years ago. Now i am scared if this part of colon will heal eventually by any chance or should i get it removed?? Currently, i am having severe pain on the left side of my abdomen, i am passing loose stools, and sometimes i pass only mucous without any stool. Has anyone had the same experience?? i am scared because i feel so many obstructions within a span of 3 months is unusual and the pain is really depressing. Some suggestions would definitely be helpful....
07-07-2015, 05:18 AM   #386
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Has your GI recommended surgery? Or have you had a chance to discuss your concerns with a surgeon? Talking with doctors would be the place to start I think. But it does sound like some surgical intervention may be needed. You don't want to go on getting more obstructions, but you also need to know that if you do have surgery, it will take care of the problem. A surgeon who has seen your test results will be able to give you the best advice on whether this will be the case for you.
07-31-2015, 08:20 AM   #387
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im having an op for bowel obstruction in few wks time as i have to stop taking some tablets first but can only eat a smooth diet,any ideas what please,my fruit smoothies go straight through me as does soup,only meal ok is mashed spud and carrot and jelly and im sick of it,oh,did have some mashed fish yesterday and that was ok vivien
07-31-2015, 12:06 PM   #388
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im having an op for bowel obstruction in few wks time as i have to stop taking some tablets first but can only eat a smooth diet,any ideas what please,my fruit smoothies go straight through me as does soup,only meal ok is mashed spud and carrot and jelly and im sick of it,oh,did have some mashed fish yesterday and that was ok vivien
Maybe check with your physician(s), in terms of anything to keep the soups and smoothies from flying through you. My PCP is big on soluble fiber: he has me taking two heaping tablespoons of whole ground flax seed meal in a big glass of water once a day (i do it first thing in the morning). Not an enjoyable beverage, but not too bad with some juice (usually a bit of lemon or mandarin lime from our back yard trees), and worth it to me to not be shooting stuff out. For my particular flavor of CD, that and a product called Isatis Cooling that this same doctor also recommended (non-prescription) do a lot to keep me impressively “regular”.

Hopefully with advice from healers who know your specific situation and possibly some experimentation on your part, you’ll find something.

Best Wishes!

))Sonic((
07-31-2015, 05:44 PM   #389
Layla
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I would not want to risk taking anything to slow things down if you have strictures. Metamucil landed me in hospital with a complete obstruction! ( I had to take the Metamucil as contrast for a ct scan)

After that episode I ate a lot of mashed potatoes mixed with various things. Hot smoked salmon if great but tinned tuna or very soft chicken breast or thigh also works. You can also mix in parsnips or other root veggies and a bit of preserved lemon for extra flavour. If you get bored with the flavour, enhance it with a bit of truffle oil or porcini oil and suddenly you have posh mash If you can have dairy then cheese is also a good addition.

Fruit smoothies contain way too much fibre, the only fruit I had was banana, poached pears and similar very soft (tinned) and non fibrous fruits. Soups are great but again choose ingredients that are low in fibre even though you blend them to bits. No onion or beans, lentils or anything like that. My favourite soup is parsnip which is made with stock, parsnips, a potato for thickening and some cardamom for flavour, yummmm! But courgette also works. I used to eat that with a soft white bread to dip into the soup like ciabatta, that way it still feels like a meal, remember to chew well though.

Hope this gives you some ideas to tide you over until your op!
07-31-2015, 09:06 PM   #390
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im having an op for bowel obstruction in few wks time as i have to stop taking some tablets first but can only eat a smooth diet,any ideas what please,my fruit smoothies go straight through me as does soup,only meal ok is mashed spud and carrot and jelly and im sick of it,oh,did have some mashed fish yesterday and that was ok vivien
Hi Vivien,
I had a bowel resection to remove a stricture, then found out there was a second stricture. For the 6 months between the surgeries I was on a full liquid diet. Not nearly as bad as it sounds. I lived on (and love) a smoothie with frozen banana, rice milk, and peanut butter. I added protein powder/vitamins as needed. I also drank my fair share of Ensure (Dark chocolate only - the rest are yucky). In transitioning to real food after surgery, I added spinach, yogurt and an occasional fruit to my PB smoothie. I also ate a lot of pureed pot roast (it's just soup in the end), pureed spaghetti, pureed whatever. I still eat a lot of soup (tonight was artichoke heart/lemon, last night was butternut squash/apple, etc). Find something basic that works and that you enjoy. It is temporary. Good Luck!!
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