Kind of falling apart

Hi, blockages suck! I've been hospitalized enough for them. Maybe you can start taking a high protein/calorie shake? Another thing is just making sure that you chew extra. Stay away from mushrooms, shrimp, fat and griselle. Basically you need to just make everything as "liquid" as possible. Try and make sure you eat something between meals, it really does help even if it's not a ton. Walking after meals is also good to get your bowel moving, just letting it sit can be problematic. Try to remember what you are that could be causing you blockages and either stop eating that or make sure you chew it well. The things I mentioned were problems for me but if thing are basically liquid going in they should come out easily.

I also struggle with weight gain, I can't miss a meal or I loose weight. I also aim for 1000-1500 calories per meal.

Good luck!

Thank you so much for the reply. For what it is worth, I do not think the pain I had last night was a blockage even if I dreaded it in the moment. I plan on introducing Absorb Plus today following the container’s instructions. 1000 to 1500 calories per meal would be an incredible stretch for me, I doubt I get much higher than 400 or 500 a meal. As far as walking goes, I try to sit 30 minutes after a meal if I can and then walk for 30 minutes before sitting down again although I am generally sedentary as this unfortunately all began last year for me after I lost my job which has ultimately spiraled into being essentially housebound because I’ve never regained the confidence in my body’s ability to function necessary to get me to move forward.

I’m hopeful that last night was a one off and I can just keep trying to ease myself onto protein powders until I can get to a weight that doesn’t scare me. Additionally I am getting scoped in a week by my doctor for the two polyps in my small intestine and expect that to show if there are any structural problems I should know about.

Blockages can range from full-blown emergencies when nothing can pass to brief painful episodes when the bowel gets briefly stretched. If you have a chronically narrowed bit of intestine then you will tend to feel more than you might prefer. You don’t say much about when and how much fluid you consume, but in addition to chewing well water will help food pass more easily. Your pain obviously isn’t psychosomatic, but your fear of eating sounds like it may have become behavioral, even if understandable. Hopefully you can develop a pattern that works for you. Good luck!

Thank you for the reply! I do drink what I’d hope is a sufficient amount of water; I haven’t kept count of my total per day but I would say I finish at least two glasses between meals and end up at around eight glasses a day. I avoid water half an hour before and after meals and endeavor past that point to at least sip some every fifteen minutes.

My plan as it were is to stick to what I’ve been doing with elemental shakes added in until my weight is normal and assess from there how to systematically approach my diet. I can’t imagine my bowels are improved by being in starvation mode so I’m hopeful that maybe building my weight will go some way towards correcting whatever my problem is.

There seem to be a variety of opinions about drinking water with meals. I’m not sure what theory, experience, or doctor’s instruction may have persuaded you to separate them. Since you seem to be having a problem with food getting stuck I’d suggest at least experimenting with including water with meals, to see if the food flows better.

For what it’s worth, my weight loss is probably the thing concerning me above the pain. I had none yesterday and hadn’t had anything significant for months before yesterday. I think the blockage made me overly sensitive to pain and it’s been difficult for me to keep level headed when it does happen. In fact it kind of leveled me out to just get through yesterday intact and I no longer would say I’m coming undone. I do wonder if I really have anything significantly wrong in there aside from the two polyps I need removed and discomfort from some place that’s a touch too narrow or from gas.

You’re probably right about the water. My surgeon seemed to consider matters concluded once the pouch was finished and was more or less impossible to contact and the doctor I switched to in response is running into issues with my insurance. As a result, I don’t really have consistent medical advice from a professional. I came by that idea probably from some poucher I read on some website or god knows wherever else I might have encountered it. Your point is a fair one and I think if I experience a bad jolt again I’ll try adding it to meals.

FWIW I drink water with every meal. While there may be excellent individual-specific reasons to separate them I think it’s poor practice in general for J-pouchers, who are prone to dehydration.

If you're female and the doc who gaslighted you by telling you your pain is psychosomatic is male, this fits into an old stereotype, and there is obviously some creepy sexism/misogyny in play that has been very prevalent in western medicine, but getting less so as the field is less dominated by one gender.  I hate to say it, but it is something that is still experienced by a lot of women when they go see doctors.  And this type of sexism/dismissal of real concerns is not limited to male docs. We know this type of misogyny is alive and well in the world and definitely in the USA where I am.  I'm so sorry you had to encounter this vile sort of behavior. It shows that person is very emotionally underdeveloped and perhaps on the sociopath/narcissist spectrum. I would not ever go back to them if possible. There are plenty of more competent doctors in the world who are not threatened that someone who inhabits a body is always more qualified to know what is happening inside it than they are. 

I know what it feels like to be wary of eating things that might cause a blockage. I've also had recent experience with a stoma and short length of bowel where I just couldn't seem to get a diet that consistently worked, and eating became a source of problems without any pleasure, for a while. I know how frustrating and miserable that can be.

One thought I have for you. Many years ago I had a large abscess that was effectively an obstruction and I had to empty my pouch through a catheter. During this time I continued to eat my normal meals but just put them all through a blender to puree them. Not always the most appetising to look at, but once I got past that, at least I could eat a variety of foods that I liked the taste of. Maybe you could try that and then experiment with adding non-pureed things in later.

I also drink water with meals, more if it's a thicker/harder type of food, and less if it's softer/thinner. For me it's about trying to achieve a nice (soft) physical consistency with what moves through my bowel.

Hang in there.