Skip to main content

I just want to shout in to the void. I am so frigging tired of being in pain! Amd it is always out of the blue. My symptoms get worse during ovulation and periods. So every 7 to 10 days there is a high chance I am going to be in pain. This were going well this week till I had the audacity to be intimate with my partner. Now cramps from the moment I wake up.

I am 12 days in to my cycle, so around about the time I am ovulating. And my body is cramping up like I am having my period and my arse is an empathic barstard and doesn't want the my uterus to feel lonely so it has decided to act up as well.

It has now been 13 years, 13 years of just on and off pain. The body pain that comes from compensating from abdomen pain. My back is a mess because I was/am constantly tense from pain in my stomach. At least one hole is bleeding every month! When the stars a line at least 3 will bleed, vigina, arse and my nose. So been going in for iron infusions since last year because my blood won't stay in my pigging body. I always want to sleep due to low iron, get dizzy going up the stairs and struggling with the brain fog of low iron and possibly having adhd.

I know other people have it worse but I just want to scream and feel sorry for myself for at least 30 minutes without the guilt of "other people have it worse so buck your ideas up" comes creeping in to my head.

I am just angry, tired, upset and guilt ridden. I will change my mind set and find my happy self again, soon, but from the moment 😡😤😭🤬😓☹️🥺😡💩

Original Post

Replies sorted oldest to newest

Dear Scatty,

I am so sorry you’re having all these issues. I just said to my hubby yesterday how tired I am of “taking care of my pouch” and my butt!! Ugh. So time consuming.

Do you love your doctors? Maybe time to explore new ones who can help you through these problems.

Hang in there. Best of luck to you!

Hi Mrs P.

My doctors have been ok at the GP. The IBD nurses have bee  very helpful too but anytime I go to see the gastro doctors at the hospital....feels like that are just doing a check list and barely listen to you. They just repeat colonoscopies and blood works. The last one showed 3 ulcers in my pouch "Ye they are unteatable, we will just keep an eye on them"

I have toyed with the idea of having a bag for life but I want to delay it as long as possible. Last chance saloon type of thing.

Dear Scatty,

it is so frustrating when you feel like your GI doc just doesn’t understand. I’ve been there, and through several different physicians before I found my current Dr. She herself suffers with Crohn’s  which I believe makes her more empathetic. I also like that she’s a woman. Nothing against the men out there!

Hi Mrs P,

I am hoping that I find one soon. I had one female Doc that nearly brought me to tears with frustration. I asked her about the pain I was going through, it came to light later in ER that I was matted with adhesions that took 2 & half hours to cut through. I was asking what she thought the pain was and if there was anything they could do?

She just kept repeating to me that I had had my colon removed and that the only way to get rid of the pain was to put it back. But they couldn't do that. I was bewildered. I told her I knew what had happened to me and they things can't be reversed, though I wasn't asking them to do that, and all she kept saying was "well you had your colon removed 🤷🏼‍♀️"  A year later I ended up in A&E with a blockage and needed emergency surgery. The matting. I know there is not much they can do for adhesions but they just kept telling me it was all in my head. It was so frustrating.

Through this forum I have come upon a book called "Listen to Your Gut" by Jenni Patel that has given me lots of ideas about things that may help with gut issues, but it is all trial and error.  This group has given me tons of ideas, too.  My butt also gets empathetic with my cycles (both ovulation and menses) and I'm the same with the bleeding holes except not the nose.  I have found that nothing is better than aloe on my butt for soothing irritation.  I use an organic one with the fewest ingredients (Badger brand "after sun gel" is the easiest one like that to find around here).  The gel from a fresh plant is supposed to be even better.  Aloe is also anti-fungal, so it cuts down on yeastiness, which I also constantly struggle with.  Also if I take a teaspoon of powdered psyllium husk (has to be find ground) mixed with water before each meal, it makes what comes out my butt much more kind to my butthole. 

Hi Sara,

Do you have a recommended brand of psyllium husk?

Although I have solved the Imodium riddle, my butt has been been sore for weeks now.  I find I constantly need to use the bidet after BMs. The cleanup plus butt burn is annoying and tiresome.

Psyllium is the one solution I’ve never really given a try and it’s time has arrived.

I used to use "Now" brand organic psyllium husk powder but because of global climate change, there has been unprecedented drought and a psyllium shortage, so now I just get what I can. I just try to make sure it is finely ground.  I have not tried yet, but the regular psyllium husk could probably be ground to a powder in the food processor and might work alright.  It has to be powder or it's too scratchy.

If I don't burn up in TX or croak in the next pandemic, I'll probably perish by not being able to get my medicinal foods. Nobody listened when human inflicted climate change was first noticed, and now the chickens have come home to roost.  Humans are truly stupid animals. Those big brains aren't helping us at all.

Add Reply

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