I have had multiple blockages in the past, the max time for me was a week and the lowest time1-3 days

Thanks Lauren!

I seem to recover quite quickly in terms of bowel function, but i’m just wondering if it’s normal for the small bowel to take a while to adapt to solid food again?

Like i’m wondering if i still have a kinked / twisted intestine, or if it has “unkinked” and the intestine is still swollen and sensitive to too much solid food?

I can basically eat some solid food at the moment, but not too much.

Thanks

Every blockage is different. Most resolve completely, and the insides can feel bruised for a day or three. Sometimes the intestine can stay slightly kinked (and therefore narrowed), though, so proceed slowly and see what you comfortably tolerate.

@Scott F posted:

Every blockage is different. Most resolve completely, and the insides can feel bruised for a day or three. Sometimes the intestine can stay slightly kinked (and therefore narrowed), though, so proceed slowly and see what you comfortably tolerate.

Hi Scott

If the intestine stays kinked can it still eventually unkink itself in the future, or is this a permanent thing?

I’m just trying to gauge what i’m willing to put up with.

I seem to have a good run of a few days eating solids and a functioning pouch, then it gets blocked up again and i back off and go onto liquids again.

I don’t know if it’s just a patience thing with the food, or if it’s a permanent problem that needs surgery.

Thank you

If the problem is due to adhesions then it will most likely settle back into its long-term pattern. These aren’t brand-new adhesions, just loops of bowel that have slipped into an unfortunate configuration that hopefully they will slip back out of. Some adhesions that cause severe chronic problems do warrant surgery, but it’s risky because the surgery also leads to more adhesions.

If this isn’t due to adhesions then things are different. For example, a stricture due to Crohn’s could create a problem that warranted surgery. It’s also worth thinking through how sure you are that this is a “simple” blockage. For example, pancreatitis might be confusable with blockages, though it sounds like your CT scan probably identified a blockage.

Adhesions can be enormously frustrating. We have essentially no control over when they act up and when they calm down.

@Scott F posted:

If the problem is due to adhesions then it will most likely settle back into its long-term pattern. These aren’t brand-new adhesions, just loops of bowel that have slipped into an unfortunate configuration that hopefully they will slip back out of. Some adhesions that cause severe chronic problems do warrant surgery, but it’s risky because the surgery also leads to more adhesions.

If this isn’t due to adhesions then things are different. For example, a stricture due to Crohn’s could create a problem that warranted surgery. It’s also worth thinking through how sure you are that this is a “simple” blockage. For example, pancreatitis might be confusable with blockages, though it sounds like your CT scan probably identified a blockage.

Adhesions can be enormously frustrating. We have essentially no control over when they act up and when they calm down.

Thanks again for your valuable insight

I think it’s definitely a blockage caused by adhesions, but obviously i can’t be 100%

Yes it is taking it’s toll emotionally on me, i don’t really know what to do, if i knew that the bowel will eventually unkink or untwist itself then i’m happy to wait on a restricted diet.

But then if this is going to be the norm for me long term then i don’t think i can live like this and would consider surgery and have to accept the risks.

Is there reasons why the bowel can sometimes fix itself and go back to it’s original position? Is it just the general movement that can make it unkink or untwist?

Kind of in limbo, but i have booked to see my surgeon next Tuesday.

Thank you

There’s more than 15 feet of small intestine jammed in there. Adhesions cause random parts of it to attach (more or less permanently) to other parts or to the bowel wall. I sometimes imagine it like a drawstring from a pair of pants trapped in the dryer door - the pants turn but the drawstring doesn’t, and things get kinked up. It’s far from a perfect analogy, but it represents the idea of the trapped section. Once the dryer is stopped the mess can get untangled. Intestines can slide in any direction, and over time will (usually) tend to find a less stressed configuration, unless something gets irreversibly and completely trapped (an urgent surgical matter).

@RB15 posted:

Thanks Lauren!

I seem to recover quite quickly in terms of bowel function, but i’m just wondering if it’s normal for the small bowel to take a while to adapt to solid food again?

Like i’m wondering if i still have a kinked / twisted intestine, or if it has “unkinked” and the intestine is still swollen and sensitive to too much solid food?

I can basically eat some solid food at the moment, but not too much.

Thanks

Good question, with me personally, the days 1-3 being the lowest and the week being the max time is the same healing time for my small intestine as well. Not in regards to solid food but in regards to soreness. As far as the twisted thing, I do not have experience in that.

I would definitely take it easy for the week though.

@Scott F posted:

There’s more than 15 feet of small intestine jammed in there. Adhesions cause random parts of it to attach (more or less permanently) to other parts or to the bowel wall. I sometimes imagine it like a drawstring from a pair of pants trapped in the dryer door - the pants turn but the drawstring doesn’t, and things get kinked up. It’s far from a perfect analogy, but it represents the idea of the trapped section. Once the dryer is stopped the mess can get untangled. Intestines can slide in any direction, and over time will (usually) tend to find a less stressed configuration, unless something gets irreversibly and completely trapped (an urgent surgical matter).

Thanks Scott, i think your analogy is great, it’s helping me understand how adhesions and the bowel work.

I didn’t realise the bowel moves around so much, i think it might be wise for me to try stick to a sensible semi liquid diet for a few weeks rather than a few days.

I think i’ve been jumpIng the gun with too much solid food everytime i start to feel better, then i get blocked again and have to back off.

The pain is off the charts when it happens.

Thanks

@Former Member posted:

Good question, with me personally, the days 1-3 being the lowest and the week being the max time is the same healing time for my small intestine as well. Not in regards to solid food but in regards to soreness. As far as the twisted thing, I do not have experience in that.

I would definitely take it easy for the week though.

Yes i agree, i think i have been too cavalier with trying to go back to a normal solid food diet within days of the blockage clearing.

I need to be patient, see what my surgeon says next week too.

I’m just finding it hard to get enough calories on a liquid / soft diet

Thanks

@RB15 posted:

Yes i agree, i think i have been too cavalier with trying to go back to a normal solid food diet within days of the blockage clearing.

I need to be patient, see what my surgeon says next week too.

I’m just finding it hard to get enough calories on a liquid / soft diet

Thanks

I totally understand what you mean. Our bodies require tender loving care and patience. I am glad you are going to see your surgeon next week.

Regarding the calorie situation, I would rely in juices and smoothies to get my calories in and just to stay healthy, that way while you are healing- you are also getting calories. Also put salt in your water so your sodium does not drop.

You will also have more bowel movements at this time too.

@Former Member posted:

I totally understand what you mean. Our bodies require tender loving care and patience. I am glad you are going to see your surgeon next week.

Regarding the calorie situation, I would rely in juices and smoothies to get my calories in and just to stay healthy, that way while you are healing- you are also getting calories. Also put salt in your water so your sodium does not drop.

You will also have more bowel movements at this time too.

Thanks

Do you have any high calorie / low fibre smoothie recipes?

I’ve just started with smoothies and for breakfast im having almond milk, peanut butter, oats, and a bit if honey, and it’s really good.

I would like to know of any other ideas that’s kind to the J Pouch

Thanks

I had a blockage back in April. Afterward I was on a low-residue diet (easy to digest foods) for a couple of weeks. Like you, I tried to go back to normal eating to soon, and found it wasn't pleasant.  I ate cream of rice cereal, Boost or Fair life protein shakes, soups, bone broth, scrambled eggs, oatmeal that I first pulverized in the blender to make it smaller and easier to digest, yogurt... (I actually Googled easy to digest food for a list.)

My doctor put me on prednisone for this and I'm still weaning off it, but I have now introduced a "normal" diet into my routine. Best advise I can give is listen to your body, if you feel pain or discomfort with a food, back off and try something on the easy to digest food list. I found I wasn't as hungry after the blockage and my distended abdomen needed a lot of TLC to feel "normal" again.

Hope this helps some

@Still Standing posted:

I had a blockage back in April. Afterward I was on a low-residue diet (easy to digest foods) for a couple of weeks. Like you, I tried to go back to normal eating to soon, and found it wasn't pleasant.  I ate cream of rice cereal, Boost or Fair life protein shakes, soups, bone broth, scrambled eggs, oatmeal that I first pulverized in the blender to make it smaller and easier to digest, yogurt... (I actually Googled easy to digest food for a list.)

My doctor put me on prednisone for this and I'm still weaning off it, but I have now introduced a "normal" diet into my routine. Best advise I can give is listen to your body, if you feel pain or discomfort with a food, back off and try something on the easy to digest food list. I found I wasn't as hungry after the blockage and my distended abdomen needed a lot of TLC to feel "normal" again.

Hope this helps some

That is a massive help, thank you

It’s always good to hear from someone who has been through the same thing.

So for you was it 2 weeks of the “safe” diet before you introduced a normal diet? And have you had any twinges since the normal diet?

I too have been googling, but my job requires me to do alot of highway (motorway here in the UK) driving, and yesterday i stopped at a service station and stupidly had a melted cheese & onion pastry bake, i thought i was in the clear then had alot of horrendous trapped gas pain this morning where the blockage area is.

So, from now on, and taking your 2 week example, i’m going to be on a much stricter low residue diet.

I’m loving my new breakfast smoothie, and i have got a vegan meal replacement drink for before bed, and in between i will be having softer foods.

Thanks again, i really appreciate it 👍🏻

@RB15 posted:

Thanks

Do you have any high calorie / low fibre smoothie recipes?

I’ve just started with smoothies and for breakfast im having almond milk, peanut butter, oats, and a bit if honey, and it’s really good.

I would like to know of any other ideas that’s kind to the J Pouch

Thanks

The recipes that are my favorite are strawberry, bananas, apples, blueberries. I mainly buy a brand called, "Naked". They make amazing smoothies!!! They have Naked smoothies at Walmart and Super Target, I am not aware of any other places that have them. Are you near a Walmart or Super Target???

I'll admit, I've had a few tinges of "don't eat that for a long time yet" moments, but they are decreasing. Thankfully my stomach is starting to go back down to normal, but it's not perfect yet. My blockage was caused by inflammation in the pouch, so we're trying to continue to get that addressed with meds and diet.

Soup for me for 5-7 days.

Period.

@Mysticobra posted:

Soup for me for 5-7 days.

Period.

Sounds like a good plan

It’s so hard to stick to, but i have bought a food blender so i can have more soups, as most of the ones i like are loaded with carrots, potatoes etc.

Thanks

RB15 How are you doing now???

@RB15 posted:

Sounds like a good plan

It’s so hard to stick to, but i have bought a food blender so i can have more soups, as most of the ones i like are loaded with carrots, potatoes etc.

Thanks

Hi Lauren, thanks for asking

I’m still kind of in limbo, because i’m functioning ok on a careful / restricted diet, and the pouch is functioning well.

But it’s on a morning where i have problems for some reason, as soon as i get out of bed and get ready for work my abdomen starts making crazy noises and i feel waves of pain from the peristalsis.

This is after eating my dinner the night before with no pain, emptying the pouch before bed, and having a good sleep.

It seems like gas and stool get stuck up where the narrowing is during sleep, and when i get up it starts trying to make it’s way through.

By the around 2pm i have emptied a few times and feel better, then usually have a decent evening.

So, it’s not really bad enough to warrant surgery, but i also don’t want to live like this and be on this restricted diet forever, and have loud gurgling everytime something is passing through.

I’m seeing my surgeon tomorrow to ask his advice and what he thinks i should do, i’m hoping / praying he might say that it just takes time for things to go back to normal, or that the intestine will eventually unkink itself back into place.

I know that surgery is usually a last resort or in an emergency, but if it’s gonna be like this forever i would probably consider elective surgery.

Thanks again

Oh man! I am sorry to hear that. I am glad you are going to see your surgeon tomorrow, definitely let me know how that appointment goes. I hope you get some good news regarding this.

@Former Member posted:

Oh man! I am sorry to hear that. I am glad you are going to see your surgeon tomorrow, definitely let me know how that appointment goes. I hope you get some good news regarding this.

Will do, thanks

Just a quick update!

Just been to see my surgeon.

So i told him my current problem is mainly on a morning upon waking up until around 2pm i have pain and gurgling as the gas and stool from my sleep starts to make its way through the narrowing.

This is relieved by a BM in the afternoon.

Anyway, after the last appointment with him where he was sure it was caused by adhesions from looking at the CT scan, he threw a bit of a curveball.

I havent mentioned i was diagnosed with Crohns 2 years ago, after a UC diagnosis originally in 2002, i know this can happen so wasn’t too shocked.

I have been on Stelara for over a year with great results, but he mentioned that the narrowing could also be from a potential Crohn’s flare up, although he also said there were no signs of active Crohn’s on the CT scan which was a bit of a contradiction.

So the plan is to have a scope with balloon dilation, and if he can stretch the narrowing he will, he will also see how the Crohn’s is looking.

As for adhesions, he said he is not thinking about surgery right now due to the fact i’m not in an emergency situation, and the associated risks of the surgery causing more adhesions.

He said there was no evidence of strictures from the CT scan but that the narrowing could be from Crohn’s inflammation.

I have a few questions, does active Crohn’s inflammation always turn into scar tissue? And if so how long can the active inflammation be left before it turns into scar tissue?

I’m worried that if i have active inflammation above the pouch that this will turn into a stricture.

Thank you

Oh I did not know you were diagnosed with Crohns! I am sorry to hear that. I am assuming that was after your J-pouch surgery right??? Most surgeons would never do a J-pouch surgery if the patient has Crohns.

I believe your doctor, sounds like the Crohns is acting up unfortunately. I really hope you do not lose your J-pouch, I hope you get to keep it. I hope the Stelara continues the work.

I have heard excellent results with the dialation from other people, I think that will work too. Do not get it done awake though.

When does the surgeon plan on doing the dialation???

As far as your questions go: I am not entirely sure. I know sometimes Crohns can leave scar tissue in some people permanently but I do not know about always always. I think you have excellent valid questions. I would write those questions down and bring that question list with you and ask the doctor. When you see the doctor, I would start by saying, " I have a list of questions regarding my health, can we go over them?" That way that gives the doctor a warning not to rush the appointment. That has helped in my case before.

Yeah I would be worried about that too. I would definitely bring that up.

IS your dialation surgery soon???

@Former Member posted:

Oh I did not know you were diagnosed with Crohns! I am sorry to hear that. I am assuming that was after your J-pouch surgery right??? Most surgeons would never do a J-pouch surgery if the patient has Crohns.

I believe your doctor, sounds like the Crohns is acting up unfortunately. I really hope you do not lose your J-pouch, I hope you get to keep it. I hope the Stelara continues the work.

I have heard excellent results with the dialation from other people, I think that will work too. Do not get it done awake though.

When does the surgeon plan on doing the dialation???

As far as your questions go: I am not entirely sure. I know sometimes Crohns can leave scar tissue in some people permanently but I do not know about always always. I think you have excellent valid questions. I would write those questions down and bring that question list with you and ask the doctor. When you see the doctor, I would start by saying, " I have a list of questions regarding my health, can we go over them?" That way that gives the doctor a warning not to rush the appointment. That has helped in my case before.

Yeah I would be worried about that too. I would definitely bring that up.

IS your dialation surgery soon???

Yes i was originally diagnosed with UC and had pouch surgery, had 14 great years then started having bleeding and pain, was then diagnosed with Crohn’s 2 years ago.

The Crohn’s is above the pouch in the Ileum, the pouch has not yet been affected by the Crohn’s (touch wood)

I’m having the balloon dilation in 3 weeks as he goes away for a few weeks, will be good to see what’s going on in there.

The question about strictures and inflammation came to me after seeing him today, which typically happens alot, even after asking him every other question written in my phone.

Thank you 👍🏻

Yeah unfortunately I hear that story all the time about people getting their J-pouch surgery and then Crohns comes later. Its unfortunate but very common. I had a Prometheus blood test done before any major surgery- that test tells you if you have Crohns, Ulcerative Colitis, or Unknown- mine came back Ulcerative Colitis. I am not sure how accurate that test is though.

I hope the Crohns will not affect your pouch. So it looks like maybe the Stelara is not working. What do you think about trying Remicade??? Do you want to bring that up to the doctor???

Oh good! I am glad we have a plan!!! Please let me know how everything goes with the dialation. I will keep you in my prayers. I am very worried!

Trust me, that is completley normal! I make a list all the time and after the appointment new shit comes to me (no pun intended haha). Definitely put those questions on the new list.

@Former Member posted:

Yeah unfortunately I hear that story all the time about people getting their J-pouch surgery and then Crohns comes later. Its unfortunate but very common. I had a Prometheus blood test done before any major surgery- that test tells you if you have Crohns, Ulcerative Colitis, or Unknown- mine came back Ulcerative Colitis. I am not sure how accurate that test is though.

I hope the Crohns will not affect your pouch. So it looks like maybe the Stelara is not working. What do you think about trying Remicade??? Do you want to bring that up to the doctor???

Oh good! I am glad we have a plan!!! Please let me know how everything goes with the dialation. I will keep you in my prayers. I am very worried!

Trust me, that is completley normal! I make a list all the time and after the appointment new shit comes to me (no pun intended haha). Definitely put those questions on the new list.

Yes i will update here after the scope!

I tried Humira first and it didn’t work, and i believe Remicade is also a TNF alpha drug, so they said it’s pointless to try.

The next obvious one to try if Stelara has stopped working is Skyrizi.

But i will see what they say after the scope, it’s possibly still adhesions, so it’s kind of up in the air still.

Thanks again

Remicade is under the same drug classifier as Humira???

Okay perfect! I look forward to the update!

Never heard of Skyrizi, sounds cool. I heard Xeljanz is pretty good.