Hello, Bee26840.

That must have been awful and scary. You could still try to eat your vegetables by peeling the zucchini and cooking the fleshy part. You could also peel and spiralize it and eat it like spaghetti, but remember to steam or microwave it well. Chew everything very thoroughly. Don't eat any vegetable raw for now. Don't eat any of the skin. The tomato and eggplant have seeds so that likely contributed to your blockage.

Can you try eating squash?  Leave the skin on, slice in half lengthwise, olive oil the inside, place it cut side down on parchment paper on a roasting pan and roast until soft. Scoop out cooked squash, sprinkled with cinnamon or olive oil, salt. Or cook all the veggies that you like and blend it into a hot or cold soup with yoghurt or turmeric on top. Basically break down all your veg as much as possible before it reaches your intestines. Pan fry slices of firm tofu with store bought sauce. I eat sautéed tofu with peanut sauce but that will not work for you right now because of the nuts, you'll have to avoid nuts and seeds for awhile. Good luck. 

Thanks so much!

it never occurred to me to peel the zucchini before spiralizing it!  And I love spaghetti squash so if you think that won't cause blockage, I'll try it tonight. 

Is there a point that it is safe to eat raw veg or skins again, or are these things to be avoided indefinitely? 

Can you juice your fruits and/or veggies? It's a really good way to get that nutrition. I've even made a vegetable soup with all the yummy things I love in it and then put it the blender. It was delish!

The veggies don't cause the blockage. A narrowed or kinked area of intestine is the cause. Food gets impacted behind the narrowing and stretches out the intestinal wall, causing a lot of pain.

If you think you may still have a narrowed area, liquid will get by more easily than larger, fibrous material. Gradually advancing your diet helps you catch a persistent problem before you get into big trouble. Good luck!

I have a handheld immersion blender...I just cook any veggies in any sort of broth (you can get vegetarian mushroom flavored broth as a base if you don't use vegetarian chicken or beef) or with tons of fresh herbs.

Once cooked I just immerse the blender directly into the pot...and whoosh...pureed soup.

I do it with fruit salads too...hubby eats the fruit salad, I wait until the next day (the fibers break down nicely while macerating in the fridge) and then I add crushed ice and blend...instant smoothie.

The same goes for vegetable salads...hubby chews, I blend into cold soups.

Whatever I cook for hubby usually blend for me...

This way I am not frustrated, or suffering from deficiencies...it is also a great way to recycle leftovers.

I steam a lot of veggies in the pressure cooker...it goes faster and retains more vitamins...then I drink the cooking water as tea or use it as a base for other meals (I cook rice in it or pasta)

Beware of brown, whole grain or wild rice...it blocks you up...I eat a lot of white rice but then chug prune juice to make sure that it flys through me and doesn't cause a traffic jam...

Keep yourself well hydrated, it does help...

Sharon

Hi

You didn't mention how far you are out from surgery but it was a dicy situation for me and I had a bunch of blockages right after surgery but none in the 25 years since.  Swelling and adhesions can sometimes take a while to settle down. My surgeon told me he never saw bowels swell up like mine did after being cut. I guess it didn't like being cut.

Just be careful for a while and if need be give up the vegetarian thing for a while and eat some healthy meats to get protein in your body, last thing you need is anemia and/or weight loss. 

You mentioned spiralized Zucchini and just want to mention to everyone last weekend my local Trader Joe's was sampling their new spiralized carrots and they are fantastic! You can find them in the frozen foods vegetables section. I sautéed them with some light butter and TJ's crushed frozen garlic cubes and they were really good! Ironically raw carrots did cause one of my blockages 25 years ago.

i recently celebrated my 25th anniversary with the J Pouch and it's been a great adventure including the said blockages at the beginning of that 25 years but I would not change anything.

Good luck and hopefully you just are in a rough postsurgical patch you will move on from like I did!

Thanks!  All very good tips.

I am 10 years from my surgery (eek, writing that just made me feel really old). 

I definitely think I still have a narrowing - I can feel cramps as food goes through now that I am advancing my diet a bit.  I'm currently enjoying a smoothie and am planning my next grocery trip with all your suggestions in mind.  

It's interesting what you are all saying about fluids.  I almost always drink a huge cup of tea in the morning, but on the day of my blockage, I was in a rush and skipped it.  I didn't end up drinking anything until 1pm when I had a cup of water. Probably the combination of my narrowing plus the whole grain rice, veggies with skins and no fluid was to blame?  

If it's caffeinated tea then it dehydrated you and didn't hydrate you. Coffee has a severely dehydrating effect which I counteract by drinking herbal teas through the day. I would agree with the other posters that negligent self hydration is a problem for new pouchers and some people like me need way more hydration because I dehydrate easily. Be very mindful of hydration and food and beverage that dehydrates especially alcohol and coffee.

Coffee and tea probably don't actually contribute to dehydration, though it's hard to shake the belief. For more detail, here's a news story with a link to a relevant study.

http://www.npr.org/sections/th...hydration-and-memory

If J Pouchers were not the control group then I don't put much stock in that study.  We are prone to dehydration and the J Pouch accelerates the process more quickly than coloned persons who can perhaps withstand the effects better especially of alcohol or caffeine.

The other severe health issue associated with dehydration is blood clotting/DVT which can be caused by alcohol and caffeine combining with the atmosphere and pressure as on long distance flights.  Sometimes it is not the one factor in isolation but the combination of factors.  I was involved in 2 legal cases when DVTs resulted from drinking too much on long distance flights, which is not something anyone should ever do unless they are also hydrating themselves and doing jumping jacks every 15 minutes or so.

Some of the other or alternate reasons for blockages are adhesions, whether they are wrapped around your gut or something else, preventing things from flowing freely in the gut or (in my case) sticking the gut to the abdominal wall in an elbow shape that didn't allow things to flow through) or kinks that can come from 100 reasons including drinking a carbonated drink too fast (yup, I didn't believe that one either until it happened to me)...swelling caused by a bug or flu that leaves your system fragile or getting hit in the gut (been there, done that too)...

You have 2 major types of blockages, total and partial.

Total: nothing is moving at all...can not even take a pill or sip water, it comes right back up. Nothing comes out the other end either. No peristaltic rhythm unless you put something in and then the cramping, labor pains, and hell have no name. You can have chills, fever, nausea (yes!!!) and lower back pain.

Partial: things can go in or come out but just a few drops at a time. Pain, cramping, nausea, vomiting, swelling...all of the above symptoms but you can still hydrate. Do not eat even if you are tempted until it passes. 

Some of the solutions are:

1. Walk, walk, walk. Keep moving, it stimulates the gut and can help unblock things.

2. Rock & roll...up and down on your toes, climb stairs, roll on a pilates ball...But gently...do some simple yoga moves if you can (no twisting)...anything to help the gut to unblock itself.

3. Heating pad for the pain and relief.

4. Massage the gut with your hands, using gentle circular movements...knead it too...At this point anything helps or at least shouldn't hurt.

5. Take a hot bath. 

Usually, I give it 24 hrs before heading out to ER...they are mostly lost and useless, not able to do much but sedate me, put me on I.V. fluids (after 24hrs it is sort of a must with a total blockage) and do x-rays...useful to find out what is going on in there.

Call your doctor to give him a head's up even if it resolves itself...he needs to know that this is happening and keep an eye out for it if it happens again.

I am sure that there are more causes and more solutions but that is my personal list...hope that you never need to use it.

Sharon

Wow, thanks!

i don't think I could last 24 hours without pain control if this happens again.

I didn't say that I don't get pain control but I do something that is not really recommended by doctors or the ER...My GP (God bless him) gave me a script for motion sickness medication (Gravol, Dramamine...) in injectable form...I have a couple of shots in advance ready if and when needed...I when I know a blockage is coming on and when it gets bad I take a shot (can't swallow anything by then...if I can still swallow I take it in liquid or baby format to allow for easier absorption)...in my case, and this is very, very personal, it does the trick (calms my whole body down, makes me sleepy enough to not feel the pain, allows me to sleep a bit, works like an anti-pain med for me...) but...it is made to slow or stop the peristaltic rhythms and that is anti-intuitive...meaning it slows your gut...And if you already have an occlusion or blockage you may want yours to wake up and get moving...it is Not recommended for an Ileus...that is when your gut stops working post op (doesn't wake up after surgery or anesthetic) or if you suspect and ileus...so please don't try it unless your doctor says that you can or should.

Also, if things get really bad and I need to head out to the ER I make sure that they know that I have taken it...

Sharon

Soluble fibre is fine usually it's the insoluble kinds that we need to be careful of. Agree with other less fluids makes everything a bit riskier maybe things get sticky. Small portion little and often can help! Good luck !

Hello,

This is my first time on the forum. I really respect your honesty.   I am 6 years out from getting my j pouch. The first year was horrible but things got better. Now I am going backwards.  I was in the hospital at the end of March for a total obstruction. The worse thus far!  Afterwards I had numerous accidents and could not sleep much at all. Last week I had another obstruction which now the accidents are far more frequent. I am 61 and this has caused me to make the decision to retire early. I am even considering disability.  No one seems to understand. My surgeon is 100 miles away and my family MD doesn't have a clue what to do for me. I am really at my wits end.  Please help??

Hi Vergie, 

How about if we take this slowly and start at the beginning...When did you have your first occlusion? What happened? What brought it on (if you know)...was it following a heavy or unusual meal?

Where is it situated (if they have figured that much out...Where do you feel the blockage? In the part of the intestine leading into your pouch? somewhere higher up in the intestine? On the right? The left? In the middle? does it come on quickly or slowly? Can you still sip water during the blockage or is everything shut out?)

Have you had an MRI or scan done to see if there is a narrowing in the intestinal tract? Could it be adhesions or do you have a twist or elbow somewhere lower down? after the occlusion is your output water? Is that why you are having accidents or is there another reason?

I know that this is a lot but try to answer as many as you can and then we can move forward with suggestions for everyone who has any experience in this.

I hope that we can find something that will help you figure this out.

Sharon

Sharon,

thank you for replying. During the surgery to repair fistula there was not much to work with (small intestines), therefore I have a restriction. Yes, they have done ct scans no MRI. I have a tremendous amount of scar tissue.  My first obstruction was due to skin from a small potato. I have had numerous obstructions some of which Is obviously a certain food. They are always at the same area and its leading into the pouch. Sometimes I can drink but these last two I couldn't. 

The output is not liquid but no warning at all.  They are not necessarily after a meal either. 

I have been lucky so far because the fluids I get from hospital helps. I must get complete bowel rest before I can pass anything. The pain is horrendous. 

This feels so good to say these things out loud! 

Thanks!��

Hi Virgie, it is such a difficult problem many of us here can empathise and understand your suffering! I wanted to share that One thing I have found to really help is to slow down when eating, some might call it 'eating mindfully ' being tuned into what you are feeling and putting in your mouth, mindful of portion size and fibre intake but also eating slow and chewing well and breathing deeply into abdomen. I used to do the opposite of this - eating fast and doing things at same time. Breathing techniques can really relax the bowel and also stimulate peristalsis . Lying flat after eating REaLLY helps me after a meal, coupled with abdominal breathing (look up diagrammatic breathing ). Of course these techniques may not help if you have an outright mechanical issue such as a narrowing but might help you to manage, I've gone over a year without any now and these are the things that have helped me , I hope you get on top of things soon, x

I know that you are going to hate this idea but have you thought about using a blender or an immersion blender to liquefy your food before eating? You can turn foods into either purées or smoothies or gazpacho soups (cold summer soups: I do that with leftover salads)...

Is there any way that the doc can do a dilation? Stretch the area to try to liberate some of the scar tissue? 

The other idea (and this can be a double-edged sword) is laparoscopic surgery to lyse the scar tissue...it gives you pretty much instant relief (if that is your problem) but it can also encourage more scar tissue to grow back...I had it done a couple of times and it has at least released some serious scar tissue in my occlusion zone...it may grow back in the same spot or elsewhere but for now, things are quite a bit better.

Some stretching can help ease the muscles around the area too although it is not a cure it can help (think about Pilates and Yoga...but do it very gently at first until your body gets used to it...I hang my lower body upside down (not fully) but with my legs on the big Pilates ball and help my organs to ease up a bit and it gives me some relief)...

Bouncing gently also helps me...I sit on the Pilates ball and do a very slow and gentle bounce or I rock from side to side...or back to front...it helps to strengthen my abs, stretch my back and abs and it feels as if my insides are stretching too..

None of this is a cure but it may help you feel a bit better.

Sharon

Take the skin off the veggies and fruits, that is what I do for my hubby. He had a awful obstruction when he did not peel an apple and the skin caused the obstruction. Avoid nuts and popcorn...

I just finished a bowl of popcorn with caramel on it (my own recipe)...I dry pop the popcorn (just cover a deep pan and pop with no fat...the kernels are less chewy and seem to be easier to digest)...I chuck or spit out all unpopped kernels and only eat the fluffy part...I can't give it up completely so I make eating it a game...less in, less out.

As for skins, cooking or putting them in a mic will make them even tougher to digest...so do as Lablover says, if in doubt, peel!

Sharon

Thank you all for your information. In 6 years I have never had anyone to talk to except my husband.  This is definitely a learning experience!!

Vergie

Isolation is a very hard and depressing thing...I know...I am one of the 'oldies' here on the site...I have a k pouch (same pouch, different exit...we have an abdominal pouch with a stoma that you empty using a catheter) that was done in '79...long before most people had ever heard of a pouch (human experimentation in Canada...I was part of the test group)...no internet, no forums, no group anything...just isolated and alone...then I left the country and moved to a place that didn't even have surgeons to help me...(fine, I fled)...and lived 'the secret' for over 20yrs...no follow-up, no treatments, no medical advice...Even a surgeon who operated me without knowing what a k pouch was or how it worked and stuck a bag on it post op (thank goodness I woke up, freaked out and then got the explanation and had them intubate me!)

So, I understand Isolation and fear and loneliness...

Keeping food diaries helps, seeing what works and what doesn't and then writing things down...But you need to include what you eat, what you eat it with (certain mixes make things worse), what you do or don't drink at the time (certain liquids help to digest foods: grape juice or wine  ,  what meds you take with your foods etc...do not forget that certain thing can slow or stop digestion too like stress, physical activity (playing sports, sex...), so keep your diary, chart things and see what's what for you (we are all different...so of us can eat just about anything and never have a blink of a problem, others suffer for every single bite)...it will make you feel a little bit more in control...and do not forget to write down at what time you ate and how it affected your intake and your output...certain foods can give more gas or heartburn while others just slide on through...

I hope that this helps you and makes you feel a little less alone.

Sharon

I too had K-pouch surgery in 1979 then moved to Rome 4 months later.  Luckily Italy has some wonderfully private marble bathrooms (unlike the US where one can practically see your knees under the stall door!).

Modern technology has certainly facilitated the sharing of information, especially for those of us that have continent pouches.  I was so happy to have found this site during my recent crisis.  

Pamela

Pamela,

You got the 'good' foreign country...I got Paris with Turkish toilets, no lights, no water in the bathroom and disgusting floors...the 1st 15yrs were hell...things have improved somewhat over the last 10 yrs...people are getting sinks in their powder rooms although it is still quite rare...I have to discretely go into the 'bathroom' that doesn't have a toilet, fill a bottle with water and then slip into the toilet room to intubate and then back into the bathroom to rinse...most people don't ask questions but sometimes it is complicated especially when I am at a stranger's house...or the in-laws...

I have been apartment shopping this last week and having a heck of a time finding a place that is pouch-friendly...in the older buildings (pre-2000) and even then, most don't have running water in the toilet room, none have the toilet in the bathroom, and if the building is pre-1960 the bathroom is next to the kitchen and you have to get water or wash your hands from the sink (try explaining that to the hostess when you are visiting!)...I keep looking for a bathroom that fits...not easy...

Sharon

Hi Sharon,

Hope you fund a suitable place: I lived in France for 2 years pre-pouch but with UC and know what you mean. I was amazed to see the difference between France & Italy.  

Pam

Hi Pam,

We seem to have found a place but will still need to install a sink in the toilet room and another toilet in the bathroom....we need to hade 2 for mornings...so we will tweak it a bit to make things work for us.

How are you doing?

I am here in Miami for the summer trying to get my body back in shape...taking more time every year. 

For now the core muscles are responding and the legs are better but the weight is not budging.

Nend to be more careful with sweets and ice cream binge eating.

Sharon 

Sounds relaxing.  We were in Miami for a conference several years ago and visited the Keys (loved it there!) and the Everglades afterwards. I sent a couple of personal messages earlier - did you get them?  I've been feeling great since that horrible episode in March - the new tube has been working very well for me - 4 months now.  I got my life back!

Pam

Sharon, nice to see you are back in the States!  Wish I was in Miami about now, anyplace but here!  Jeff is making me nuts.  Has not learned a thing from his total blockage last month.  Eating anything and everything and gaining weight.  I'm backing off completely. Mic he gets. Another blockage, he is on his own.  I can't sit and watch him.  I'm waiting for him to blow his J-pouch.  

Good news!  We are going to Quebec end of August.  Any suggestions on what to do or where to stay?  And more than likely I will be coming to Oaris next October, 2018!  Going with the girls to shop the knitting stores!  

Get some one well deserved rest!

dianne

Thanks, all of you for the suggestions regarding blockages. I had my reversal almost 4 weeks ago and had a (partial) blockage 3 days ago. No idea this could be so painful! I know it was the raw carrot that I was happily chewing away on that was responsible...no more raw carrots for a while.

It is very helpful to read your responses, again, thank you!