Skip to main content

I don’t know really how to explain my issue well but I’ll do my best. I’m 33 and ended up needing my colon removed because of FAP. I had my takedown done last June after the ostomy was made in May. It was supposed to be a longer gap (takedown in August) but I developed a blockage that my surgeon felt it made the most sense to resolve by just going right to the takedown. I had spent that whole month struggling with bowel sensations I hated and pains I didn’t understand.

The j-pouch went no better for a bit. The blockage left me at baseline genuinely scared of eating at all and trying to use the Internet to figure out what to do confused me so I didn’t eat with a game plan other than picking foods I liked that seemed safe and, when that didn’t work, sandwiches, peanut butter, and smoothies with odds and ends here and there. The net effect was that my bowel never behaved predictably and while I would have days that were fine I would have others with recurring pains and, since I never knew if it would be gas or a blockage, this usually wound me up so much that I’d end up crying and skipping meals.

This January I decided my mistake had been not having a plan so I ended up going towards the opposite extreme and so until last week I exclusively have eaten peanut butter, eggs, cheese, hummus and a strawberry banana almond milk smoothie. Nothing else and always the precise same routine and amount. I still had really small pains occasionally but nothing major. It felt like I maybe had something like my life back even though it worried me to eat the same thing every day.

Last week I weighed myself and realized I’ve basically just been losing weight slowly, quickly on any days where I skipped a single meal, and am now 125 pounds, ten below the absolute lowest BMI that would be safe for me. I added a pea protein powder to the smoothie and drank more of it. Last night recurring pain happened again for the first time since I started this and sent me spiraling back into panic until I was finally able to poop. If it helps, the pain was in my lower right abdomen near my hip joint which has typically been where I feel pain when I feel it.

I guess what I’m getting at is that I’m kind of coming completely apart and I don’t know what to do to stop it. I know one option would be that I just have to eat more and push myself past how scared I am of blockages but the one I had was sort of traumatic and my mind jumps right back there every time I get scared. Today I got Absorb Plus in the mail and that’s probably the only idea I have that I almost feel comfortable enough to try but if it doesn’t work I’ll be pretty lost.

Sorry for the rambling, I just have sat on this for a year and don’t know where to go with it. My current doctor hasn’t seen me for three months due to an insurance issue and the surgeon who did my pouch was of the opinion my pain was psychosomatic and there was no reason I shouldn’t be eating any food at all up to and including ones I have never heard any poucher express comfort eating.

Replies sorted oldest to newest

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!

P

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.

I

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!

Scott F

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.

I

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.

Scott F

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.

I
Last edited by itaintraito

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. 

SM

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.

Trojan

Add Reply

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