Looking for tips on obstructions

[acemagic]

Hey all,

It's been a few years since I've stepped on this board, so hello again!

I'm a very long time sufferer of Crohns (going on 22 years) and although my day to day is "normal" by my standards (I still have liquid stools 5-6 times a day), my pain is generally under control. I'm on Simponi injections every 2 weeks and Entyvio infusions every month.

BUT, about once every month or two, I get a partial bowel obstruction. These little devils often send me to the hospital and take me out of commission until I get a hefty dose of pain medication and an NG tube for good measure. Then, they want to keep me for observation and by the time it's all said and done, I've lost 4 days of work and am miserable from lack of sleep and boredom.

Sometimes I can deal with the obstructions at home, but with the increased frequency, I really need to find a way from preventing them at all.

I wanted to ask you fine folks if you have any tips for preventing and/or dealing with obstructions for yourselves? Obviously if it gets bad enough, a hospital visit is necessary, but do you have any methods that you use to minimize the occurrence and severity? Any foods that you tend to avoid?

For me, I *think* raw fruits & veggies trigger me, but not always. It's so difficult to tell.

If I get an obstruction, I immediately take a hot bath to try and relax my body. Sometimes, going for a walk before the pain gets too bad helps, and if it starts getting quite bad, a heating pad on the area helps. This weekend, I thought I was for sure going to a hospital, but in additional to everything above, I started burping...like...a LOT, and shortly thereafter, The pain subsided and was manageable and eventually it resolved on it's own.

It got me wondering if anyone else had any tips? Please share if you do!

Thanks!

Adam

 

[Kannassee]

Hi acemagic:

I am REALLY sorry to hear about your obstructions.

For me, they are NOT for sure "little devils"....bowel obstructions, I really fear them man.....

Why do you get them, ....areas of inflamation, strictures, adherence, adhesions....?....do you know??
When I used to get them, I was scared to death of getting one.

The only way I could avoid getting them was eating absolutely NO FIBER.....my diet was very limited.....
....like a burger and eggs, maybe with mashed potatoes......milk, freshly squeezed fruit juices(no pulp, filtered, V8 filtered)....some crackers......you get the idea.
When I started to feel that one was coming it usually help if I took a 20 mg prednisone pill, and maybe laying on my side.

even pills could give me one.....it was terrible....I was living in constant fear.

I usually got them 7 or 8 hours after eating, I remember waking up at 3.00 am at night.....some nausea......some weird sounds....and...

going out for a long walk in the middle of the night praying that it will go away....

Like nausea.....some cramps.....little cramps....spaced every 5 min?.....stronger cramps.....spaced 40 secs......really painful cramps, cold sweating, vomiting......a terrible pain.......ER.......nasogastric tube......dilaudid or tramadol......and I began to feel better.....I usually always took out the nasogastric tube myself, much to the nurses dismay.

Now I don't get them anymore.....I had one a couple of months ago but I had dried figs, dried fruits and MUSHROOMS..... the wort thing that I could eat but thanks God after several hours walking I did not end in the ER.....it was too much

I don't get them anymore because I had a balloon dilation of an anastomotic stricture that was causing them, in my terminal ileum.
I had only 3 mm left for the food to pass by. If you can eat some veggies yours maybe is not so so bad. I just couldn't.......

Everybody was telling me that since I had so many abdominal surgeries that they were caused by adhesions.....that was not the case.
The stricture did not show up in the MRI. It was a fibrostenotic stricture. Only when my new GI did an endoscopy, he discovered that:

1-I had Crohn's in my terminal ileum. Probably had it for 20 years, undiagnosed.

2- I had an anastomotic stricture (were I had before an ileostomy because of peritonitis 2 years ago) It was a fibrostenotic one.

By the way, I got much better when they took away my sigmoid colon when it burst causing peritonitis 2 years ago. no more loose stools....
They told me that it was caused by a diverticulum....I think it was caused because of my not yet diagnosed Crohns. It was like yours....6 or 7 loose stools in a "good" day.....but then later when they "reconnected" me is when the obstructions began.

The only good thing of the bowel obstructions was that I went from a BMI of 36 to a BMI OF 26 and that my diabetes and HB pressure dissapeared.

It would be really important to find out why/where in your intestine you are getting them.

I am now on Infliximab....I think it helps too.

 

[Scipio]

I don't get them anymore because I had a balloon dilation of an anastomotic stricture that was causing them, in my terminal ileum.
I had only 3 mm left for the food to pass by. If you can eat some veggies yours maybe is not so so bad. I just couldn't.......

How long ago did you have the balloon dilation? I'm wondering how long the beneficial effects of the dilation last, because I read somewhere that strictures tend to come back after a while post balloon dilation.

I have two strctures that I know of: one in the esophagus and one in the terminal ileum. I had one obstruction about 5 years ago at the ileal stricture that eventually resolved itself and hasn't given me any trouble since. But the stricture is still there, so I'm just thinking ahead in case the obstruction recurs some day and I need a balloon dilation.

 

[Kannassee]

Hi there!!

Well I had it really not so long ago.
My GI dilated it twice in May and June I think. I stopped getting the obstructions right away. My stricture went from 3 mm to 12mm and then to 15 or 16 mm. He wanted to do a 3rd one to dilate it to 21mm, that's I think the normal diameter of the ileum but at the end he did not do it.
I had an obstruction a couple of months ago I think but I think it was my fault.....I had lots of marinated mushrooms, dry figs, dry fruits....and 8 hours later.....cramps....
So I still have to be a little bit careful.
My GI thinks that next year maybe I would need to get another one if I begin to get those symptoms again. The good thing is that it does not hurt at all and the results are immediate. No anesthesia. Just light sedation.
There is always a small danger than the gut may "burst" with the balloon, but its not common at all. My GI has done lots of them and that has never happened. But he told me that always when he is inflating the balloon and counting the time he gets a little bit nervous!!!
I think there is another approach called needle knife something but they only do that at the Cleveland Clinic. In the one in Ohio. We have one an hour away but they don't do that there. Wow man you are really lucky about that stricture in the ileum.!!!

 

[acemagic]

Kannassee!

Thanks so much for the quick response!

You hit the nail on the head with your description of an obstruction. I couldn't have put it better myself. I definitely underplayed the severity of them by calling them "little devils" Your description almost made me have another one, it was so on point!

To answer your question, I have difficulty getting a straight answer out of my doctor. Originally, it was scar tissue from previous surgeries, but the last time we spoke, it was due to a buildup of disease. but the last time I had a scope, the report said my inflammation has receded a significant amount, and yet my obstructions have only increased in number.

I've started keeping a food diary every time I have one, and to be honest, any kind of fibre seems to be the culprit for me too. But then I'm like I HAVE to eat some vegetables, right? RIGHT???

But it feels like whenever I do, the next day I just "feel it". it just boggles my mind because it means that my most recent obstruction was caused by some lettuce, pickles, green peppers and tomatoes on a burger. It doesn't feel like that would be enough to cause a blockage, but maybe I'm kidding myself. 3mm (as in your case) is certainly not a lot, and I'm not sure how restricted I am.

And when I get them, it's like butterflies in the gut that won't go away. Like someone is slightly scratching me from the inside out, and just not stopping, continuing on for hours and hours and hours in the exact same spot.

The walking thing definitely sometimes helps, but the pain gets so bad that my body just shuts down from exhaustion, and then it's up to painkillers, a good heating pad cranked up to the point of burning my skin, and laying on my side...

...Until I throw up from pain. And if I throw up, it's game over. The obstruction wins and I'm hospital bound.

Basically, it sounds like we're on the same page.

So you just cut out veggies altogether hey? I bought a juicer a few years ago for this very reason, but pure veggie juice tastes awful (I'm looking at YOU V8), so I added fruits. Those drinks gave me crazy bloating and gas, and I only recently discovered that the sugar content of the fruits without the fibre content is a shock to your liver and is quite bad for you and can cause the gas. So...that's cool.

I'd also like to not die from malnourishment, so I'm open to suggestions! Even "How to make V8 taste good" would be great! lol

I'll talk to my doctor about the balloon dilation. I know it was mentioned once to me, but I'm pretty sure it was never implemented. Maybe I'm a candidate. The terminal ileum is where my Crohn's is too!

Thanks so much for the input. It's good to know there are others out there and I'm VERY glad to hear you found some relief through your balloon.

-Adam

 

[Kannassee]

Kannassee!

Thanks so much for the quick response!

You hit the nail on the head with your description of an obstruction. I couldn't have put it better myself. I definitely underplayed the severity of them by calling them "little devils" Your description almost made me have another one, it was so on point!

To answer your question, I have difficulty getting a straight answer out of my doctor. Originally, it was scar tissue from previous surgeries, but the last time we spoke, it was due to a buildup of disease. but the last time I had a scope, the report said my inflammation has receded a significant amount, and yet my obstructions have only increased in number.

I've started keeping a food diary every time I have one, and to be honest, any kind of fibre seems to be the culprit for me too. But then I'm like I HAVE to eat some vegetables, right? RIGHT???

But it feels like whenever I do, the next day I just "feel it". it just boggles my mind because it means that my most recent obstruction was caused by some lettuce, pickles, green peppers and tomatoes on a burger. It doesn't feel like that would be enough to cause a blockage, but maybe I'm kidding myself. 3mm (as in your case) is certainly not a lot, and I'm not sure how restricted I am.

And when I get them, it's like butterflies in the gut that won't go away. Like someone is slightly scratching me from the inside out, and just not stopping, continuing on for hours and hours and hours in the exact same spot.

The walking thing definitely sometimes helps, but the pain gets so bad that my body just shuts down from exhaustion, and then it's up to painkillers, a good heating pad cranked up to the point of burning my skin, and laying on my side...

...Until I throw up from pain. And if I throw up, it's game over. The obstruction wins and I'm hospital bound.

Basically, it sounds like we're on the same page.

So you just cut out veggies altogether hey? I bought a juicer a few years ago for this very reason, but pure veggie juice tastes awful (I'm looking at YOU V8), so I added fruits. Those drinks gave me crazy bloating and gas, and I only recently discovered that the sugar content of the fruits without the fibre content is a shock to your liver and is quite bad for you and can cause the gas. So...that's cool.

I'd also like to not die from malnourishment, so I'm open to suggestions! Even "How to make V8 taste good" would be great! lol

I'll talk to my doctor about the balloon dilation. I know it was mentioned once to me, but I'm pretty sure it was never implemented. Maybe I'm a candidate. The terminal ileum is where my Crohn's is too!

Thanks so much for the input. It's good to know there are others out there and I'm VERY glad to hear you found some relief through your balloon.

-Adam

Hi there Adam:

Your description is perfect too. If I vomited = trip to the ER....

I am gonna try the heating pad thing when I get my next one. Because I am almost sure that I eventually will get another one. I think Prednisone helped me too. (less inflammation??)

I bought the juicer and I added carrots, tomatoes, peppers, celery, some pickles, olives, maybe a couple of apples etc etc....anything that I though may have vitamins, and then I filtered everything at the end. Sometimes I added a can of V8 at the end.....

I added also garlic or onion powder, curry, black pepper, olive oil, bread etc etc whatever I could think of just to vary the taste.

I had the same problem with the fruit juices...too much sugar....too much gas.

There is a Spanish recipe of a cold veggies soup (with no fiber) that maybe you can try. Its called "salmorejo".
You can google it.

Basically its tomatoes, garlic, pepper, olive oil, maybe some vinegar, and french bread and you put everything in a blender and later you filter it. I agree its not for everyone. But it helped me to get my vitamins. Lots of them. And not much fiber.

Balloon dilation works best when the obstructions are not very long.....between 1 and 4 (inches or cm), I think
Also if the damage is very far away up into your small bowel it may be difficult to get there.

In my case also calprotectin levels go hand in hand with amount of inflammation.

Yup, I think it would be a good idea to find out about the balloon dilation thing.

Not all Drs do it. And maybe it wont work for you. But you never know!!!.... Its best to find a Dr. that does lots of them, Its a little bit tricky to get into the terminal ileum sometimes compared to the large bowel.

Javi

 

[acemagic]

Hi there Adam:

Your description is perfect too. If I vomited = trip to the ER....

I am gonna try the heating pad thing when I get my next one. Because I am almost sure that I eventually will get another one. I think Prednisone helped me too. (less inflammation??)

I bought the juicer and I added carrots, tomatoes, peppers, celery, some pickles, olives, maybe a couple of apples etc etc....anything that I though may have vitamins, and then I filtered everything at the end. Sometimes I added a can of V8 at the end.....

I added also garlic or onion powder, curry, black pepper, olive oil, bread etc etc whatever I could think of just to vary the taste.

I had the same problem with the fruit juices...too much sugar....too much gas.

There is a Spanish recipe of a cold veggies soup (with no fiber) that maybe you can try. Its called "salmorejo".
You can google it.

Basically its tomatoes, garlic, pepper, olive oil, maybe some vinegar, and french bread and you put everything in a blender and later you filter it. I agree its not for everyone. But it helped me to get my vitamins. Lots of them. And not much fiber.

Balloon dilation works best when the obstructions are not very long.....between 1 and 4 (inches or cm), I think
Also if the damage is very far away up into your small bowel it may be difficult to get there.

In my case also calprotectin levels go hand in hand with amount of inflammation.

Yup, I think it would be a good idea to find out about the balloon dilation thing.

Not all Drs do it. And maybe it wont work for you. But you never know!!!.... Its best to find a Dr. that does lots of them, Its a little bit tricky to get into the terminal ileum sometimes compared to the large bowel.

Javi

Can you tell me more what you mean about calprotectin levels? What are they, and how do you manage them?

 

[Kannassee]

Its an inflammation marker.

C reactive protein....it may mean that there is inflammation going on in the body. But it wont tell you where.

Calprotectin its a very good marker for amount of inflammation and it is specific to the gut. My new Dr. checks the levels from time to time to see how I am reacting to Remicade.

A stool sample is sent to a lab and they will measure it.

So far I started with more than 500 and it has been going down steadily to 46. It seems Remicade is doing me good.

0 to 50 = normal
50 to 120 = suspicious
more than 120....inflammation is going on somewhere in the gut. Some people have 1000, 2000.

Well I just discovered that it existed last year after being more than 25 years suffering from this thing.

Actually I dont think in the nineties it ever existed!!!

 

[acemagic]

Its an inflammation marker.

C reactive protein....it may mean that there is inflammation going on in the body. But it wont tell you where.

Calprotectin its a very good marker for amount of inflammation and it is specific to the gut. My new Dr. checks the levels from time to time to see how I am reacting to Remicade.

A stool sample is sent to a lab and they will measure it.

So far I started with more than 500 and it has been going down steadily to 46. It seems Remicade is doing me good.

0 to 50 = normal
50 to 120 = suspicious
more than 120....inflammation is going on somewhere in the gut. Some people have 1000, 2000.

Well I just discovered that it existed last year after being more than 25 years suffering from this thing.

Actually I dont think in the nineties it ever existed!!!

Awesome, thank you for that!

 

[Kannassee]

How long ago did you have the balloon dilation? I'm wondering how long the beneficial effects of the dilation last, because I read somewhere that strictures tend to come back after a while post balloon dilation.

I have two strctures that I know of: one in the esophagus and one in the terminal ileum. I had one obstruction about 5 years ago at the ileal stricture that eventually resolved itself and hasn't given me any trouble since. But the stricture is still there, so I'm just thinking ahead in case the obstruction recurs some day and I need a balloon dilation.

Actually in my case the baloon dilation lasted only about a year....... so my GI decided that it would be worthwhile to get take away the diseased part.
They just did that less than a month ago. The surgeon took away about 3" of ileum and did a new anastomosis.

The surgery, well..... it was a bigger surgery than what I was anticipating.

They started it laparoscopically but they had to switch to open surgery, a lot of adhesions from all the other surgeries and he had to repair an old incisional hernia. Thanks God it is over.