Skip to main content

Hi Jackie--Please let us know if you do get the clear passage treatment. I've heard about it on other threads but wasn't clear if it helped long term.

For the rest of us, I just found this very helpful diet source. it's basically what i have been following, but offered graduated levels of diet depending on symptoms. 
http://www.clearpassage.com/si...ive-health-guide.pdf

I'm having another blockage this week though, so i guess it isn't perfect 

 

Haven't posted in a long time, just thought I'd throw my hat in the ring and say that I am going through something similar as well.  

First surgery was over 30 years ago when I was 14.  After s-pouch revision in 2002, Ive had approximately 6 full obstructions lasting 12-24 excruciating hours that all resolved without surgery, and a steady increase in partial obstructions (from a few per year to presently a few per month) leading me to this thread today.

I would like to give my thanks for the clear passage info.  I may consider it.  Also enzymes as someone suggested is potentially a good idea for experimentation.  I am also interested in laproscopic options but have not gone down that road yet or heard much from others about it.

In case it might resonate with anyone, I can offer my 2 cents about obstructive symotoms and antibiotics.  While they may help with pouchitis and other symptoms, I am convinced that (for me personally) antibiotics have been a contributing factor to adhesion related obstruction.   Before giving them up 4 years ago, I'd taken them on and off for decades, and slowly was able to deduce a correlation.  If your # of bm's are reduced on antibiotics, then it just may be for someone with adhesions, the likelihood of obstruction may increase without enough bacteria in there doing what they do.  I am only speaking from my personal experience and what I believe to be true for myself. Obviously these things are very subjective, but it feels worth sharing anecdotally because there's very likely never been any studies on this, and your GI is likely to never  consider the possibility when prescribing (I could be wrong though, just my impression).

I am single and live alone and work full time.   I just keep adapting as best I can.  I can't eat normal sized meals any more without paying for it and try my best to restrict meal size.  Very difficult if you have done something taxing or athletic and your body is telling you to eat.  Just gotta do whatever it takes.  I'm also a big proponent of the low fodmap diet. 

Lately I've been having having chronic mild to moderate pain mid-abdomen and mild partial obstructive symptoms lasting for two continuous weeks.  This is new to me.  I'm worried it may become more serious in terms of obstruction, but for now, holding steady and hoping I can deal with it.

After many surgeries, procedures, exams, and consultations, I've learned that simple mindfulness (paying attention to my body) has probably been the most effective form of treatment available to me.  Obviously that's only going to get you so far and sometimes/ultimately it's out of our hands. I would never wait too long to seek medical help or emergency medicine when it is needed.  

Stay strong everybody!  Wishing you peace when you need it most!  And how 'bout a nice long run of good luck?  I think we deserve one of those too!

b_logan posted:

Haven't posted in a long time, just thought I'd throw my hat in the ring and say that I am going through something similar as well.  

First surgery was over 30 years ago when I was 14.  After s-pouch revision in 2002, Ive had approximately 6 full obstructions lasting 12-24 excruciating hours that all resolved without surgery, and a steady increase in partial obstructions (from a few per year to presently a few per month) leading me to this thread today.

I would like to give my thanks for the clear passage info.  I may consider it.  Also enzymes as someone suggested is potentially a good idea for experimentation.  I am also interested in laproscopic options but have not gone down that road yet or heard much from others about it.

In case it might resonate with anyone, I can offer my 2 cents about obstructive symotoms and antibiotics.  While they may help with pouchitis and other symptoms, I am convinced that (for me personally) antibiotics have been a contributing factor to adhesion related obstruction.   Before giving them up 4 years ago, I'd taken them on and off for decades, and slowly was able to deduce a correlation.  If your # of bm's are reduced on antibiotics, then it just may be for someone with adhesions, the likelihood of obstruction may increase without enough bacteria in there doing what they do.  I am only speaking from my personal experience and what I believe to be true for myself. Obviously these things are very subjective, but it feels worth sharing anecdotally because there's very likely never been any studies on this, and your GI is likely to never  consider the possibility when prescribing (I could be wrong though, just my impression).

I am single and live alone and work full time.   I just keep adapting as best I can.  I can't eat normal sized meals any more without paying for it and try my best to restrict meal size.  Very difficult if you have done something taxing or athletic and your body is telling you to eat.  Just gotta do whatever it takes.  I'm also a big proponent of the low fodmap diet. 

Lately I've been having having chronic mild to moderate pain mid-abdomen and mild partial obstructive symptoms lasting for two continuous weeks.  This is new to me.  I'm worried it may become more serious in terms of obstruction, but for now, holding steady and hoping I can deal with it.

After many surgeries, procedures, exams, and consultations, I've learned that simple mindfulness (paying attention to my body) has probably been the most effective form of treatment available to me.  Obviously that's only going to get you so far and sometimes/ultimately it's out of our hands. I would never wait too long to seek medical help or emergency medicine when it is needed.  

Stay strong everybody!  Wishing you peace when you need it most!  And how 'bout a nice long run of good luck?  I think we deserve one of those too!

Thank you for sharing! I’m sorry to hear that you have been dealing with this for so long! Your attitude is encouraging though. I agree that listening to our bodies is one of the best things we can do. I’ve been dealing with this for about a year now and so far doctors haven’t really been able to help me much. Limiting my food intake is the only thing that seems to help. Like you said, it’s not ideal, but I don’t want to be in pain either. I hope your situation gets better. Stay strong! 

b_logan posted:

Haven't posted in a long time, just thought I'd throw my hat in the ring and say that I am going through something similar as well.  

First surgery was over 30 years ago when I was 14.  After s-pouch revision in 2002, Ive had approximately 6 full obstructions lasting 12-24 excruciating hours that all resolved without surgery, and a steady increase in partial obstructions (from a few per year to presently a few per month) leading me to this thread today.

I would like to give my thanks for the clear passage info.  I may consider it.  Also enzymes as someone suggested is potentially a good idea for experimentation.  I am also interested in laproscopic options but have not gone down that road yet or heard much from others about it.

In case it might resonate with anyone, I can offer my 2 cents about obstructive symotoms and antibiotics.  While they may help with pouchitis and other symptoms, I am convinced that (for me personally) antibiotics have been a contributing factor to adhesion related obstruction.   Before giving them up 4 years ago, I'd taken them on and off for decades, and slowly was able to deduce a correlation.  If your # of bm's are reduced on antibiotics, then it just may be for someone with adhesions, the likelihood of obstruction may increase without enough bacteria in there doing what they do.  I am only speaking from my personal experience and what I believe to be true for myself. Obviously these things are very subjective, but it feels worth sharing anecdotally because there's very likely never been any studies on this, and your GI is likely to never  consider the possibility when prescribing (I could be wrong though, just my impression).

I am single and live alone and work full time.   I just keep adapting as best I can.  I can't eat normal sized meals any more without paying for it and try my best to restrict meal size.  Very difficult if you have done something taxing or athletic and your body is telling you to eat.  Just gotta do whatever it takes.  I'm also a big proponent of the low fodmap diet. 

Lately I've been having having chronic mild to moderate pain mid-abdomen and mild partial obstructive symptoms lasting for two continuous weeks.  This is new to me.  I'm worried it may become more serious in terms of obstruction, but for now, holding steady and hoping I can deal with it.

After many surgeries, procedures, exams, and consultations, I've learned that simple mindfulness (paying attention to my body) has probably been the most effective form of treatment available to me.  Obviously that's only going to get you so far and sometimes/ultimately it's out of our hands. I would never wait too long to seek medical help or emergency medicine when it is needed.  

Stay strong everybody!  Wishing you peace when you need it most!  And how 'bout a nice long run of good luck?  I think we deserve one of those too!

I have been through the same things. I find that when I eat meals and I'm feeling of struct it because I forgot to take a super enzyme if I take the enzyme I end up going to the washroom and I feel a great relief. Please try the enzymes with your meals and you'll find a big difference. I never put two and two together but yes the antibiotic condition that comes about with taking antibiotics seems to be a good diagnosis. From now on I will try to avoid antibiotics at all costs that makes a lot of sense.

Thanks for sharing that. Let me know how the enzymes help you. I can guarantee that you'll get great relief.

I wish I had known this years ago. I've been suffering with obstructions one almost killed me about 30 years ago I only had an hour to go my bowel was completed blocked.

SJAN810 posted:
b_logan posted:

Haven't posted in a long time, just thought I'd throw my hat in the ring and say that I am going through something similar as well.  

First surgery was over 30 years ago when I was 14.  After s-pouch revision in 2002, Ive had approximately 6 full obstructions lasting 12-24 excruciating hours that all resolved without surgery, and a steady increase in partial obstructions (from a few per year to presently a few per month) leading me to this thread today.

I would like to give my thanks for the clear passage info.  I may consider it.  Also enzymes as someone suggested is potentially a good idea for experimentation.  I am also interested in laproscopic options but have not gone down that road yet or heard much from others about it.

In case it might resonate with anyone, I can offer my 2 cents about obstructive symotoms and antibiotics.  While they may help with pouchitis and other symptoms, I am convinced that (for me personally) antibiotics have been a contributing factor to adhesion related obstruction.   Before giving them up 4 years ago, I'd taken them on and off for decades, and slowly was able to deduce a correlation.  If your # of bm's are reduced on antibiotics, then it just may be for someone with adhesions, the likelihood of obstruction may increase without enough bacteria in there doing what they do.  I am only speaking from my personal experience and what I believe to be true for myself. Obviously these things are very subjective, but it feels worth sharing anecdotally because there's very likely never been any studies on this, and your GI is likely to never  consider the possibility when prescribing (I could be wrong though, just my impression).

I am single and live alone and work full time.   I just keep adapting as best I can.  I can't eat normal sized meals any more without paying for it and try my best to restrict meal size.  Very difficult if you have done something taxing or athletic and your body is telling you to eat.  Just gotta do whatever it takes.  I'm also a big proponent of the low fodmap diet. 

Lately I've been having having chronic mild to moderate pain mid-abdomen and mild partial obstructive symptoms lasting for two continuous weeks.  This is new to me.  I'm worried it may become more serious in terms of obstruction, but for now, holding steady and hoping I can deal with it.

After many surgeries, procedures, exams, and consultations, I've learned that simple mindfulness (paying attention to my body) has probably been the most effective form of treatment available to me.  Obviously that's only going to get you so far and sometimes/ultimately it's out of our hands. I would never wait too long to seek medical help or emergency medicine when it is needed.  

Stay strong everybody!  Wishing you peace when you need it most!  And how 'bout a nice long run of good luck?  I think we deserve one of those too!

Thank you for sharing! I’m sorry to hear that you have been dealing with this for so long! Your attitude is encouraging though. I agree that listening to our bodies is one of the best things we can do. I’ve been dealing with this for about a year now and so far doctors haven’t really been able to help me much. Limiting my food intake is the only thing that seems to help. Like you said, it’s not ideal, but I don’t want to be in pain either. I hope your situation gets better. Stay strong! 

Doctors would never suggest super enzymes. I actually went to an osteopath for Clear passage therapy, where she manipulates my bowels and tries to separate adhesions and scarring. That helped for a little while, it did actually also clear one small blockage that I was having but in the long-term it doesn't help. You would have to do that on a regular basis and that can get very expensive. She was the one that recommended super enzymes and I'm grateful for that, extremely grateful please everyone, try them!

I am having the Clear Passage Therapy at the Gainsville, Fl location starting May 27th.  I will try to keep you guys updated.   The real Clear Passage Therapy can only be done at one of the official Clear Passage Clinics.  The therapist have special training specifically for adhesion therapy.  One of you mentioned that you went to an Osteopath for this treatment.  Unless it was done at one of their facilities it was not the true Clear Passage Therapy.  They also train you while you are there to do maintenance Therapy on your own.  I am hoping that his will be my miracle.  I am so tired of the blockages and the surgeries.    

I know I won't know immediately if it works but have talked to a couple of patients that said the way their bowels moved  after therapy was immediately better.  Only time will tell if it will keep me from more blockages and surgery!

I talked to my surgeon about the Super digestive Enzymes when I went to get his okay for the therapy and he wanted me to only do one thing at a time.

 

 

 

maddie18 posted:

Does anyone think cheddar cheese can cause obstructions.  I've heard cheese is the hardest food to digest.

I generally avoid dairy because it makes me feel sick if I eat too much of it but this would be another good reason to avoid cheese. I think if you have a tiny bit once in a while it might be okay but eating a lot of cheese could probably cause a problem. When I first had my j-pouch surgery I was told to eat “thickening” foods so that my BMs would be thicker and not so watery. Now I’ve been told to limit my intake of those foods (things like bread, pasta, rice, peanut butter, applesauce). It seems to help to eat less of those foods and to eat less food overall so that I don’t get overly full. It means that most of my BMs are liquid or mush but that seems to make it easier for everything to pass through without getting stuck. 

I have experienced several severe intestinal blockages as a result of a lot of post-surgical adhesions, after two colorectal cancer surgeries, in 2015 and for construction of a j-pouch in 2016, (both major abdominal resections, big zippers). Anything to avoid this horror! ....  I now take super full-spectrum digestive enzymes every day, three capsules at each meal. And drink lots of water. (I have read that so-called 'pyrolytic' enzymes might help to reduce adhesions over time. Trying them, too.) Triggers include extreme stress. Food triggers: accidentally eating even a tiny amount of palm oil puts me in hospital every time!!!! ... very bad (in almost all prepared foods, so I read the labels EVERY time that I buy anything, and no restaurant meals any more, either).  Also eating too much fresh vegetables or fruit at one time, including peppers, apples or broccoli. (Well-cooked, and small amounts is okay, well-chewed. No heavy fibre, either.) Small meals, no matter how hungry. .... Each episode, searingly painful abdominal cramps beginning in two locations (CT scan showed large adhesions wrapped around small intestines), rapidly getting worse, and unrelenting, violent vomiting. At the hospital, given large amounts of natural morphine sulphate for pain, and large amounts of Gravol-type anti-emetic to relieve vomiting. Each time, hospitalized for 3-5 days to rest bowel, nasal-gastro tube to continuously remove stomach secretions (otherwise, unbelievable vomiting, torn stomach lining). I have managed to stave off four more severe episodes (thank god) by walking around for hours, deep and very slow (mindful) breathing, while slowly sucking on 90 mg of children's chewable Gravol, as SOON as symptoms start, and taking 15 mg of morphine sulphate for pain. (Prescription, I keep a small amount handy.) Definitely a horrible thing to experience. (I am very lucky to receive compassionate care when I show up at emergency with my 'puke bucket'. Too sick to drive, barely able to get dressed. Grateful for a ride.) Sure hope some of this helps.

maddie18 posted:

Do any of my fellow j pouches think coffee or espresso affects us in a bad way?

I think it can, especially if it’s caffeinated. Personally, caffeine makes me feel shaky and nauseous so I generally avoid it. Several years ago, before my surgeries, I saw a nutritionist and she said caffeine has an effect that is basically like putting your intestines on a treadmill and overworking them so it can trigger IBD & IBS symptoms. Knowing that, I assume it could trigger symptoms for people with j-pouches too. I also remember my surgeon saying coffee is one of the foods that can trigger symptoms for people with j-pouches...this was a few years ago and I don’t remember exactly what he was referring to but I think we were talking about skin irritation from having lots of watery BMs. 

Every time I check this thread I am so disheartened how many of us have this problem. It’s a huge quality of life side effect on f the surgery that no one warned me about. I would have needed the surgery anyway, but it would just have been nice to know my healthy days were numbered. 

Related to the coffee discussion, I wonder this to. I’ve been trying to figure out why I suddenly have this obstruction problem after 20 years of good health and the only major change was the arrival of my son (he was adopted so no physical changes from that) and with it, a huge increase in coffee consumption! I wonder if it messes with our electrolytes enough to cause issues in bowel contractions, or stool consistency, or other things. Might be worth cutting out (but oh so hard with a 10 month old who is not a good sleeper yet...!) Anyone tried no caffeine? I got the enzymes maddie mentioned-I’ll let u know how they work for me.

Interestingly enough, I gave up coffee 7 years ago and only reintroduced it 3 months ago... And while I've had obstructions that have been very acute and severe during that time (aporox one per year), the symptoms I've been having recently have been different... they're almost constantly with me and partially obstructive and hurt.  Since posting here a week ago, I've given coffee up again and am possibly starting to turn the corner. At least I hope so.  We'll see    It takes months to years to figure out if one particular thing you are doing bears a greater responsibility than another thing you may be doing or simply have going on.  When I gave coffee up originally it was for the usual reasons... It exasperated any digestive discomfort or indigestion of which I had plenty.  After getting my diet in order, and avoiding antibiotics for years, I thought I could handle it.  Either my adhedions have worsened or it's coffee or possibly both.  I'm back to green tea for the foreseeable future.  I drink Japanese sencha. Avoid herbal like the plague.  The Japanese steam their leaves to cure them whereas most other tea leaves are roasted.  Less bitter more 'umami.'  I get it from an outfit in Japan called O-Cha.  Takes a while to get a system down with brewing it, you really need a japanese teapot, but great stuff.  The caffeine takes more liquid volume and longer in time to build up in your system, but it's much more even than coffee   Less highs/lows.

Ps.  They key to replacing coffee with tea, especially drinking sencha, is to get a hot water heater with an adjutable temperature gauge.  You want to use water that is not boiling hot!  Many workplace water coolers have hot on demand, that temp is on the cool end but works great.  I never use the hot water attached to coffee brewers, that temp is almost 200 degres F, way too hot... in terms of bitterness and drinkability makes a big difference. Could I make it any more obvious that I'm a fan of green tea?  

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×