constipation saga

I also have horrible worries about my guts doing the wrong thing at any given time which makes travel planning anxiety-provoking.  My guts still do the wrong thing seemingly randomly.  I have been guilty of eating too much popcorn and sometimes the guts get mad about it: it seems to have more to do with what kind of oil is on them than the popcorn itself. Popcorn with olive oil and salt is never a problem for me, but other kinds of oil no way.  But can't we wash out any dietary indiscretions with drinking lots of water AND...I wonder if warm water enemas and/or sitz baths would help your situation?  I don't know anything about fistulas.  But it seems flushing everything with water can be good and can't hurt as long as we're gentle with it.  And maybe those other things you mentioned will help, too, maybe it's just taking longer?  Have you tried psyllium husk powder, the universal poop regulator?  That with lots of water might help.  I'd get organic, plain, fine ground powder.  No need for any other ingredients.  It's so gentle and soothing to my nether parts.  The psyllium gods are kind.

It is true that you didn't sign up for this.  None of us did!  Please don't beat yourself up over the popcorn because maybe it did and maybe it didn't hurt you.  The food gods don't seem to respond to crying, offerings, blood sacrifice, etc., or at least, not in my experience.

Figuring out how to live with these reconstructed guts seems to be a life long process.  I have had a lot of trouble being patient with myself and a lot of frustration because NOBODY knows what to do about it.  The only way I have found is to experiment on myself.  Also, I listen to the experience of the people in this group and sometimes try what they have had success with, but only when I have capacity for the experiment to go wrong.  Nothing too wild.  I never really thought about washing myself out from the bottom side until I heard about it from this group.  Regular old tap water enemas have been fantastic for fissures.  Who would have known?  People in this group often explain why something works instead of just what they do.  I love that.

Another gut-soother besides psyllium I have found is aloe capsules.  They work well with my system. 

"The food gods don't seem to respond to crying, offerings, blood sacrifice, etc., or at least, not in my experience."

The blood sacrifice thing, in particular, if ulcerative colitis is any indication... =/ (hello PTSD) lol as the Redditors say, "you speakin faks"

I did have good luck with metamucil wafers but the psyllium husk drink powders (plain organic pure or drink mixes) make me feel like I'm choking. (I have anxiety around choking.) Metamucil wafers are loaded with sugar though, and are not very healthy. I have NAFLD (despite not being overweight, might be a late in life UC complication??) so I need to basically eat like a diabetic now.

the flushing thing I learned from here, too! It does help for some of the instances of tailbone pain. It's very weird. The tailbone pain responds to antibiotics, pelvic floor stretches, hydration, pain meds, and enemas...but no tailbone pain experience reliably responds to any one of those things each time. I basically have to go down the list until something works and what the wheel stops on is different each time. I worry about the day when nothing works and I'm back in the hospital saying bye bye pouch.

I know a lot of people say "if you worry about it, it will come true." But that's BS. There's no reason in the entire universe where that makes sense. But so many people over the years have parroted that to me like it's true that it makes me nuts.

Peace...that's all I want.

BIG OLD YES to peace.  Please!  I'm with you there, sis.

I can see why the psyllium in water might make you gag.  It's kinda mucousy.  I've never had a problem unless it gets too thick.  My procedure is to mix a heaping teaspoon in with 4 oz h2o, put a lid on and shake it vigorously, and then drink it down quickly before it's thick: this is like within 15 seconds.  Then after I drink it all, I fill up the container again (4 oz?) and shake it to get the rest out, drink quickly.  The second time there is not much thickness because most of the powder has already been absorbed.  There are also psyllium capsules I could take but I'm too wary of potential clumps way down in the GI tract.  Probably not usually an issue but my intuition says no.

My biggest irritation right now is this stupid cortisol my body keeps producing as part of this menopause thing that returned a few months after I had my covid shot (I know, correlation doesn't equal causation, but I'm suspicious).  I was 2 years post-period and all the hoopla that goes with that, then I started getting horrible PMS (1000x worse than anything I'd ever gotten before) followed by a light period.  It was occasional, but lately, it's been PMS, then light period, then PMS, then light period without much peace in between.  The PMS involves panic attacks in which my body produces adrenaline and cortisol for no reason at all.  No stressful event triggers it unless falling asleep is stressful.  The toxic levels of cortisol make my guts hurt and can trigger pouchitis.  It's rude and lame and it makes me grouchy when I'm all filled with (COMPLETELY USELESS) stress hormones, haven't slept barely at all, have an aching belly, and am somehow expected to think and be productive at work?  Bullshit!!!  What's my defective endocrine system going to make me do when the saber-tooth tiger is actually in front of me?  Will it trigger melatonin production?  Will I go to sleep?  That'll be just as helpful as sending me into fight or flight when I'm dropping of to what should be a pleasant and peaceful slumber.  What do the endocrine gods respond to?  Anyone have any luck with them?  Why are they so angry with me?

The gyno said my uterus & ovaries look just like they should, thin and shriveled, for this time of life.  I'm thinking about seeing an endocrinologist, but from what I've seen for people with endocrine problems, they're pretty wild and witchy in their approach.  Bottom line, the endocrine system is not well understood or externally regulated, so treatment seems like a total crapshoot that could do more harm than good.  I'm just hoping my body will be done with this stupid phase ASAP.  Meanwhile, I will continue to experiment with various supplements.  According to the internet everything else I already do in my daily life should decrease cortisol production.  Right.  I guess it could be worse if I wasn't living like I do?  I'd probably be that person with an AR-15 coming for you shoppers if that were the case. The less mentally stable you are, the easier it is to get a gun!  Well, at least it's that way in TX.  My governor makes sure of it!

Hey I'm 43 and I think I have some peri starting so I feel you. Periods have been suuuuuuper weird lately, depression and anxiety is massively worse all of a sudden, like before I ever got treatment. It's been a lesson in discipline. And I have adhesions on my ovaries and tubes so I could never have my own kids due to all the GI surgeries which is very sad but it is what it is. Sometimes the adhesions cause me discomfort/pain.

I hope you can get your body to at least sort of cooperate at mininum as you ride the rollercoaster. endocrine system is indeed not well understood and even with all the medical advancement of the last 100 years it still often feels like this stage of life for women is this big black box of mystery. The doctors just seem to care very little...it's like...shrug....this is just what happens as you age. Very frustrating. Message me if you ever need to chat or vent about it!

Yeah, the fun started early for me with the peri-I got the j-pouch because of colon cancer after UC.  Chemo messed with my hormones so I guess my peri-meno started at 37/38.  Hormones mostly in the form of topicals have been great and I still use them at 55.  I'm going to borrow my friend's copy of "The Menopause Manifesto"  by Jen Gunter when she gets done with it.  She said she's learning a lot!  I think this is something that needs to be discussed by everyone-it's part of life!  I'm not any more ashamed of it than I was to be in the breeding phase of life.  Hormones drive human behavior.  Priorities shift when we're not so controlled by them...but are we ever not controlled by them, really?  This is not gender dependent.  We are all of us twitching & writhing bags of water and chemicals. I may like to vent via message sometime and I appreciate that offer! Discussing it out here for everyone on this forum to read seems like it could be helpful, too.  I think the gods would like it, or at least find it entertaining. 

Gina, if you feel like constipated with only water getting through, you could also try a laxative. Popcorn may cause a constipation as the husk is undigestible. Can you replace it with nachos? Though those are often fried with cheap sunflower oil which is an inflammation driver with lots of omega-6 fatty acids.

I couldn't tell that I had tailbone pain yet, except if I mixed it up with cuffitis, but there was a strange formation showing on MRI scan in that area. Since I take antibiotics regularly this formation seems to have shrinked. I take Cipro and Flagyl at a low dose (about 1/4 of the normal dosage) once daily (or even every other day) at late evening.

Btw. dumping the pure psyllium husk into my mouth and adding some water, mixing it in place for a second and then swallowing it is the easiest way for me to take it. Drinking the gel from a glass is a bit of a strange feeling.

Im definitely going to try the idea of downing psyllium husk quickly rather than waiting for it to thicken.

Will reply more later.

@GinaPouchtastic I have been experimenting with an herbal formula for PMS: https://www.herbalogic.com/col...mood-swings-and-pain

It seemed to work pretty well yesterday!  I'm going to keep at it.  I also got their menopause one that I think I'll try at some point:

https://www.herbalogic.com/col...ot-flashes-flashback

The two formulas have overlapping ingredients.  I got the Peacekeeper because it has more positive reviews and my symptoms seem so PMS-like.  And you just take it when you're having symptoms.  I imagine I'll transition to the Flashback for long term use.  It may take longer to kick in.  Herbalogic was started by a local acupuncturist couple here in town and I love their formulas.  They have one called "Decompress" that I have found helpful for depression/anxiety, too.

My fistula pain in my tailbone is back with a vengeance. It didn't even wait a full 24 hours before starting up again after I finished my flagyl/cipro course.

Nothing is working this time. Not hydration, not enemas, not pain meds. I'm so scared this might be it. This might be the big one, where I lose my pouch. I had so much skin issues during the ostomy stage..I couldn't get the bag to stick. It was just in the nick of time that I had my takedown. I can't do bag again. My skin is so sensitive. I have dermatographia. It reacts to everything. 30+ years of coloplast products will not end well.

I don't know if I should seek emergency care or not. I don't know how much worse the pain has to be. They just did an MRI on the 11th and found nothing new but I also felt good that day and had no pain. So ?? Maybe the MRI missed it because it hadn't swelled back up yet? The abx were keeping it at bay? What a waste of an MRI if so!

I can't just "go to Dr. Shen." I live in Delaware. I have no idea how hard it would be to transfer to one of those J pouch research centers. I have 20 years of medical records. My case is super complicated. My surgeon at UPMC in Pittsburgh is not answering anybody's calls because I was a patient of his so long ago all that remains in my account are a few scattered reports. Nobody at Penn Medicine, where I currently go, has been able to see images let alone find out if I had enough small intestine left for a new pouch. I have no clue what is next.

The WORST thing is that in 3 weeks my husband and I, his parents, and aunt and uncle are due to go on a 3 week trip to India that has been in planning for months and is costing thousands of dollars and involving at least 100 people on the India side. I can't not go. I have no idea how we'd even rework the trip at this point.

My doctors unfortunately have until Nov 5th to get me to a reliably stable state and I don't know how that's going to happen. This feels like a truly hopeless situation. I can't even create an image in my head of how this is going to look in November. It seems inconceivable.

Some people swear by oregano oil if you think there is an infection.  I have never had that tailbone pain but it sounds horrible.  I'm so sorry.  I wish I could be of more help.  And especially, I with the doctors could be of more help! 

Why can't you not go to India if you're sick?  That sounds like it would be stressful.  Why doesn't everyone else just go without you?  You can usually get a refund on airfare/hotel, etc if you're canceling due to illness. 

Gina, could you just stay on Cipro/Flagyl, at least until after the India trip? Might that work for you? I’ve been on both Cipro and Flagyl continuously for quite a few years with great results.

@Sara Marie posted:

Some people swear by oregano oil if you think there is an infection.  I have never had that tailbone pain but it sounds horrible.  I'm so sorry.  I wish I could be of more help.  And especially, I with the doctors could be of more help!

Why can't you not go to India if you're sick?  That sounds like it would be stressful.  Why doesn't everyone else just go without you?  You can usually get a refund on airfare/hotel, etc if you're canceling due to illness.

If I let everyone else go without me I'd be stuck at home alone dealing with my health stuff by myself and I have PTSD and other mental health issues and that would probably almost be worse than being sick in India. Especially since they would be 11.5 hours apart from me and thus being able to reach anybody in an emergency would be almost impossible.

Supposedly the hospitals there are pretty good now, at least in cities, and I'd have everyone there with me. My other family lives 1000 miles away and they are not the most functional/healthy people and would not be a good support system (learned that the hard way when I was younger).

If my doctors write me back and tell me absolutely under no circumstances should I go, then I guess I'll have to make a hard decision. I'd rather not make that call flippantly though.

@Scott F posted:

Gina, could you just stay on Cipro/Flagyl, at least until after the India trip? Might that work for you? I’ve been on both Cipro and Flagyl continuously for quite a few years with great results.

That's possible. I hope it would work. It was twice a day 500 mg for each one. Maybe that is what my doctor will suggest. It's the weekend so I'll have to wait for a reply.

You have a little time to experiment with a smaller dose, which would be better (if it works) for longer-term use. For this purpose the rapid resumption of symptoms is useful, as you may get clarity more quickly. I hope you are able to make the trip and have a wonderful time! Good luck!

@GinaPouchtastic posted:

If I let everyone else go without me I'd be stuck at home alone dealing with my health stuff by myself and I have PTSD and other mental health issues and that would probably almost be worse than being sick in India. Especially since they would be 11.5 hours apart from me and thus being able to reach anybody in an emergency would be almost impossible.

Supposedly the hospitals there are pretty good now, at least in cities, and I'd have everyone there with me. My other family lives 1000 miles away and they are not the most functional/healthy people and would not be a good support system (learned that the hard way when I was younger).

If my doctors write me back and tell me absolutely under no circumstances should I go, then I guess I'll have to make a hard decision. I'd rather not make that call flippantly though.

Well then I hope this can be figured out so you can go!  Maybe the lower dose of antibiotics like Scott takes will work for you. I’m sorry I had no idea about the PTSD and mental health problems. Maybe you wrote about it and I missed it. I’m one of those people who likes to crawl under the porch and be alone when I’m sick, and trips are the worst for me. Maybe not the best thing for my mental health but I seem to get by. I wish you the best and some solution/relief for your trip!