So it would have been nice if an ostomy nurse or, you know, a fucking Doctor had informed me that once you have an ileostomy, the part of the intestine that actually absorbs minerals and vitamins like B12 and B1 (Thiamine Skip to the part that says "WHAT IS THIAMINE AND WHAT ARE THE CONSEQUENCES OF THIAMINE DEFICIENCY?") and all the other B vitamins is gone. Yeah. Gone. No big deal, right?
Without B1, you begin to get lesions on your brain.
Lesions. Deep sinking holes and sores that eat away at brain tissue. I was actually actively dying. Fun.
B1 is fortified in almost all of our foods, from bread to milk to cereal and whatever. That's why clinics and hospitals have stopped testing for B1 deficiency, as they assume most Western culture peoples consume of it in their every day lives. And that's true, they do. But for ileostomates, we don't absorb many B vitamins anymore. Some ileostomates have a pretty good diet, more normal to what they had before. Those of us that have had severe diet changes, well, at the two year mark, our B1 deficiency begins to show.
This year, I began to get disoriented, confused, angry at weird shit, and my hands and whole body were constantly shaking like I had Parkinson's disease--I felt like I was going mad, and even tried anitidepressants, which only made matters worse. Why did I change so suddenly? What the fuck was happening to me? I couldn't get out of bed, my entire body ached and hurt, I lost so much weight I now am just a skelaton.
My husband works at the College of Physicians and Surgeons in our province, and researched through their database to discover that after two years, quite a few ileostomates with drastically changed diets begin to develop B1 deficiency. Some have it worse than others. Some can manage it. Some aren't affected. But those that are end up, well, dying.
In Canada, it is legal to order B1 solution online, and we just walked into a pharmacy and asked for insulin needles and received them. When Thiamine enters your muscle tissue, it is the most painful burning like fucking liquid Napalm I have ever experienced in my life. I have had 8 or 9 surgeries in my life, and I have to say I would take another surgery over having injections of Thiamine. But I have them every few days anyway, because without it, I begin to slip back into a really disoriented and fucked-up state of being. That's no way to live, man. What the hell.
For those in the US, if you are very clever and don't mind spending a few dollars to save your life, you can find sources through the internet in which to receive injectable B1/Thiamine ordered from Canada. Not that I encourage anyone to do 'illegal' shit, but come on. Uhm...... Thiamine shouldn't be illegal to get. What the fuck--like you're gonna get high on Thiamine? Impossible. Like you're gonna collect a whole bunch and go to a middle-school in a trenchcoat and be like, "Hey kids. You wanna get Thiamine injections? Come on. All the cool kids are doing it."
You can never have too much B1 in your system, and you can never have too much B12. Your body just kinda deposes of it, like if you have "too much" vitamin C. It leaves through your urine and stuff like that.
Dude, this shit sucks.
Without B1, you begin to get lesions on your brain.
Lesions. Deep sinking holes and sores that eat away at brain tissue. I was actually actively dying. Fun.
B1 is fortified in almost all of our foods, from bread to milk to cereal and whatever. That's why clinics and hospitals have stopped testing for B1 deficiency, as they assume most Western culture peoples consume of it in their every day lives. And that's true, they do. But for ileostomates, we don't absorb many B vitamins anymore. Some ileostomates have a pretty good diet, more normal to what they had before. Those of us that have had severe diet changes, well, at the two year mark, our B1 deficiency begins to show.
This year, I began to get disoriented, confused, angry at weird shit, and my hands and whole body were constantly shaking like I had Parkinson's disease--I felt like I was going mad, and even tried anitidepressants, which only made matters worse. Why did I change so suddenly? What the fuck was happening to me? I couldn't get out of bed, my entire body ached and hurt, I lost so much weight I now am just a skelaton.
My husband works at the College of Physicians and Surgeons in our province, and researched through their database to discover that after two years, quite a few ileostomates with drastically changed diets begin to develop B1 deficiency. Some have it worse than others. Some can manage it. Some aren't affected. But those that are end up, well, dying.
In Canada, it is legal to order B1 solution online, and we just walked into a pharmacy and asked for insulin needles and received them. When Thiamine enters your muscle tissue, it is the most painful burning like fucking liquid Napalm I have ever experienced in my life. I have had 8 or 9 surgeries in my life, and I have to say I would take another surgery over having injections of Thiamine. But I have them every few days anyway, because without it, I begin to slip back into a really disoriented and fucked-up state of being. That's no way to live, man. What the hell.
For those in the US, if you are very clever and don't mind spending a few dollars to save your life, you can find sources through the internet in which to receive injectable B1/Thiamine ordered from Canada. Not that I encourage anyone to do 'illegal' shit, but come on. Uhm...... Thiamine shouldn't be illegal to get. What the fuck--like you're gonna get high on Thiamine? Impossible. Like you're gonna collect a whole bunch and go to a middle-school in a trenchcoat and be like, "Hey kids. You wanna get Thiamine injections? Come on. All the cool kids are doing it."
You can never have too much B1 in your system, and you can never have too much B12. Your body just kinda deposes of it, like if you have "too much" vitamin C. It leaves through your urine and stuff like that.
Dude, this shit sucks.
Kitty,
ReplyDeleteMy heart is so heavy. I want you to be done with all of this shit so badly. You are the strongest woman (human) I've ever known - a role-model to me, especially in times that seem like there is no way out. There's always a way, isn't there? You are a beautiful inspiration.
Stay strong. I'll be sending you and your wonderful husband good energy from my little part of the world; I hope you get it. Best love to both of you.
Hello beautiful! I've suffered Crohn's and RA for 25 yrs now and and after many surgeries have been given the ileostomy prognosis. In my copious and desperate online search for info, I found your blog. Thank you for your frankness. Your courage and beauty have made me feel much better. You remind me of my wife and we both read your blog from post to post. Life can really suck--wish I could make it better (or even explain why) for all of us. Stay strong and thanks again for REALLY picking me up with your story; good and bad.
ReplyDeleteHi, it might be the wrong plve to write this but you have a really nice blogg and I was wondering if you still have a fishnet shirt you had back in 2011 halloween? http://girlgirlsileostomyblog.blogspot.se/2011/10/halloween-costume-with-ileostomy.html#comment-form if you wanna sell it, please email aheldtn @ gmail. com
ReplyDeleteplease do not retire
ReplyDeleteI have an ileostomy and when I asked the surgeon if I needed to take B12 or any other supplements, he said no. I have had many health issues since my ileostomy surgery, and have had many, many various tests and procedures...would a blood test show a deficiency etc.? Please let me know, a lot of this stuff is new to me;). Thx
ReplyDeleteYour doctor can run a full electrolyte and vitamin panel to check for deficiencies. Some people have them, others don't. My only deficiency has been Vitamin D which is more because of where I live than my diet or ostomy. I don't have any B or potassium issues yet I don't eat many vegetables and almost no fruit.
DeleteIt seems that the side effects of Ostomy is not seen in the early stages of operation. I thought that only that bag is associated with this problem, I didn't knew that it will eventually lead to lots of other health related issues. It seems to be dangerous and must be painful too. Hope so that doctors will help them to solve this problem.
ReplyDeleteRegards:
Ostomy Lingerie
I had ileostomy 7 weeks ago because just bad colon with chronic constipation childhood I went 40 days without a bowel movement normally I go 12 days. After colonoscopy and many tests I was told I needed and ileostomy to my surprise I wasn't expecting this. 7 weeks out now I had 9 weeks can go out in public but they gave me the wrong bag I needed a convexity bag and now it's working fine but I've only had two changes. my problem is my fatigue and strength and desire to do anything I'm not back to me very aggravating I've missed so much I don't want to leave the house and I sleep a lot. I'm wondering if I need minerals or vitamins is there something wrong. No appetite and I have a sweet taste in my mouth most of the time and not wanting to eat sweets which is completely different from before. I'm 5 foot 4 inches tall and weigh about a hundred and thirteen pounds but I'm not eating very much or drinking. I just want to feel better.
ReplyDeleteHospitals don't unusually start with convexity unless there is a stoma problem, just because you can end up with pressure issues and bruising if you don't need it. I use convex and it's been fabulous compared to the flat ones I have been given after surgeries.
DeleteYou say you've only changed your bag twice? Depending on your climate and other factors, twice a week is likely best for your skin, leak-factor, etc.
It takes time after any surgery to recover. It's ok to rest and relax and allow yourself to heal. You could be tired for many reasons - dehydration is fairly common with ileostomies. If you're not eating and drinking much, you're going to lose weight and get dehydrated. Don't feel bad about going to the ER for some fluids and try to get in to see your doctor asap in case they want to check your electrolytes. Good luck and feel better soon!
I have had my ileostomy for 20 weeks and I just can't seem to get any energy. The last few weeks I just feel so light headed and short of breath and fatigued. I go to my chemo Dr. twice a week and get fluids and the neupogen shot every other week. I am getting chemo (5-FU) every other week. I wonder if I am low on vitamins and minerals?.
ReplyDelete