I actually bought one of those "nitribullet" smoothie makers in a desperate attempt to find some way of getting in more easily digestible nutrients. I have to say utterly impressed. the longer you mix it it takes everything down to darned near a cellular lvl. there is a milling blade for raw nuts which i can ground down to a very fine almost flour type consistency. Then add veggies fruit and yogurt or water or juice and i fully digest it and often dont feel a thing unless i make it a bit too thick then it kinda goes through a little slow w doesn't feel exactly great but i can't stay it hurts. For the first time in six yrs i am taking half the pain meds i was for the rectal fistula that docs by the dozen refused to touch because it's in the rectal muscles. as long as i get at least one smoothie in a day my pain all over goes down and the fistula is healing. that is right healing...but if i get lazy or tired and stop making my self one each day i start backsliding fast. I can't beleive how much stronger i am. I have a big garden and have been canning fresh stuff from that.. i am able to move around more and feel more like a real human. I highly highly highly recommend trying one your selves. Just remember it tells you half veggies half fruit and well a lot of times half veggies can be kinda gnarly tasting. It grinds up apple.. whole carrots and so forth to a fine fine particle.even with stuff like spinach greens. Its really starting to make me have less doc visits and i have not been in the er in almost a yr!
it runs about 90-100 bucks and has started rly making me better. ( and no i dont sell the things..) i am just so happy to have found something that works to get nutrients into a broken body. After 23 major surgeries and missing most of my guts.. no large intestine and missing 4 ft of small... it was rly hard having to choke down on vitamins trying to keep some semblance of nutrition going when you cant eat any thing with out pain. this thing is so worth it. on months i have slight flares i can still do the smoothies as a matter of fact i go on just smoothies entirely to rest my guts from working too hard. Life saving device if you ask me! Had to share..for anyone still lurking out there!
I got a bit excited hearing a new surgeon moved into OHSU where i currently am kept by annoying god complex doctors who think i should just die and not waste their time with trying to live. I really wish i was kidding but i am not..and frankly every doc but a rare few now come out of medical school with the idea that the worlds "chronically ill" means chronic whiner.. chronic pain med addict and above all common criminal and chronic waste of time...I decided to try again.. i went to see this new surgeon who my primary doc raved about saying she gave a huge lecture on fistulas the wk before my appointment.
i went in expecting the usual.. i got worse than. She hardly looked for the fistula the part you can see it's now bigger then a quarter.. i am not joking. it's got a thin bit of skin over it but it's a huge very noticeable hole in my skin. she "didn't see it". Then she tells me she may have to hurt me to make sure she really exams me. She stuck me several places with a wire.. i am not kidding and a big one. i have another fistula starting on my right side. she did a scope and said "ohh well it's not a fistula but a very large ulcer on the right side of your internal rectal muscles that is causing all the pain." i patiently said between huffs trying to breath from the pain and tears.. umm btw i feel blood running down my leg" ohh so she mops it up before it gets in my clothes.
She is going on about how i no longer have a fistula because she couldn't jam a large guage wire through it. Umm ... lady it is a fistula. I said that "ulcer" you saw is the internal part of the fistula. Obviously it's not healed. she then says i thought you said you felt an abscess..good news is i didn't see any. (with her eyes by the way...every abscess w me has been internal you could never just look at my skin or pouch and SEE it.)I was sobbing.. by the way i am so not a cryer even in rly bad pain when i cry it freaks my friends and family out because they know it's bad. last time i cried in an office my heart stopped from pain. Stopped. SO that in mind i was sobbing i couldn't sit down. she tells me even after i argued with her that it IS a fistula and non have ever "healed" as in both sides closed w out trapping infection.. w out surgery. She then told me even after i already told her that they have tried all meds that i know of for closing this thing and it all went badly so the gastros tell me to see the surgeon.. the surgeon tells me to see the gastros. My last gastro removed me from his patient list with out telling me just because he said "he could no longer do anything for me"
I then spent the next four days bleeding so badly i am weak.. shakey in agony can't sit and am waaay worse then when i went in to see her. I now thanks to quack after quack have to be on anti anxiety meds before each office visit. I tell ya what. I am a very very strong person but with no hope no help in sight and this having to live on pain meds then being treated badly for that too ... i am at my end. I really am. I cannot pretend that sleeping over 20 hrs a day most days and being conscious enough to go to a movie then paying for it and having to sleep off several days for daring to try to have a life.. i really am at the end of what i can handle. I really dont know what to do.
I dont see how anyone could label this stuff as "mental illnesses" there are studies showing these illnesses to be anything but a mental illness! I can't tell you how many doctors already beleive that Crohnes and UC are all a mental illness.. umm you mentally cause holes fistulas and raw guts with bleeding? Really?I really hope that any person or doc who thinks this is a mental illness gets it them selves. I really do!
So, kind of an odd question, but my husband and I just bought a house (yay!), but I have been seriously disappointed with the quality of the toilets within. To put it nicely, they canʻt flush everything that my Crohnʻs throws at them. Iʻm not sure whether theyʻre excessively low-flow (1.6 gallons per flush) or if theyʻre just really crappy toilets (har, har), but we definitely need to replace them.
Does anyone have any recommendations? Bonus points for comfort, since I kind of hang out a lot in there. Cost isnʻt much of an issue.
I have been telling docs for over three years that I have trouble swallowing anything. I have had pills get stuck in what feels like holes that shouldn't be there in my throat. Each doc said they looked and i was fine. Well i am not fine. After being left so sick i have been bed ridden for most of the last 6 yrs the acid reflux has done permanent damage to my vocal chords. Thats right.. no voice. Last year and this year i have lost my voice for up to 6mo at a time. I see another specialist for this next month to see if they can do anything. Let me tell you trying to get by in a world that expects phone calls and for you to be able to show up at appointments and talk.. it's hell!
After all of the tests,the vaccines almost killing me from some of the worst allergic reactions i have ever experienced.. humera hasn't made one damned difference in the two three months i have been on it now.
I am too scared to tell the gastro it's not working because he only wants to tear out my pouch and give me a permanent illostomy. with adhesives reacting like acid on my skin it's just not possible. I had one to heal my pouch for about 6 mo. I had many obstructions at the site from scar tissue, my skin was raw and straight stomach acid spilled all over that raw meat was agony. I can't do it again. Just can't.
I want them to put me back on remicade it was making a world of difference before they both cut back my dose and spaced it out further. They are too scared to put me back on it but i had no allergy to it last time..
I am really stuck at what to do. I have had so many docs who just dont even want me in their office because my case is complicated. I can't help that.
The only good thing going on right now is i did a rant on healthcare and the horror of being a "chronically ill patient" on someones fb and have been asked to write maybe permanently a column on healthcare and such. We will see. I am writing one and we will see where it goes.. i will post it here if anyone wants to see it once it's done...
Hi everyone, I had a resection (3/4 of my large bowel removed) almost 4 years ago but the Crohn's has come back. I have a stricture about 4cm below the join which is getting worse. My GI wants to do balloon dilation and told me the risk involved. I've given my consent to try this and will probably have the procedure next month. My question is this: Have any of you had balloon dilation to widen a stricture? How successful was it? How long were you in hospital for and what is the recovery period? I commute to work by bicycle, which is 45 mins each way, so I need to know how active I can be the day after the procedure. NB, I don't drive and the nearest bus stop is a 15 min walk away from work, and this will be Scotland in the midst of winter!
First my health went down the tubes.. AGAIN.. bleeding near needing a damned transfusion. My gasrto made me go through dozens of horrible tests i have done a million times since the fistulas appeared. Then he got on me about geting massive amounts of vaccines before he would even concider putting me on humera. Well I damned near died with two of the sets of vaccines.. a tetnus whooping cough one that attacked my nervous system causing me to start shaking sweating turning red in the face and being disoriented and panicked i literally felt like i just walked away from a bad accident i was in. And wanted to run at every sound.
I got over that to have him hit me with hepa hep b pneumonia and the recent flue vacc. I got two in each arm four tottal. I woke up shaking so hard my bed was rattling i went to bolt up not knowing why my arm felt so weird. I was twice its normal size.. i had a fever that climbed to 104 and my arm just kept getting bigger. I went to the er to get lectured on how i was taking too much benadryl and tylenol.. yeah i took it three times a day and was still at 104 and my arm got so big it was hanging over my fore arm.. then my entire body swelled i had such a swollen face i could hardly talk., What did the docs do? Give me MORE benadryle and send me home. I was really having a hard time breathing being so swelled up and really thought this was it for me.
This was almost three weeks ago now. My right side arm and neck are so tight i still can't turn my head. I have now had 4 shots of humera so far several nose bleeds and sinus migraines.
What i want to know is i know several here give lectures or speeches on having bowel disease. I was wondering how you go about doing that and getting people to have you come talk for them. I have seen enough and experienced enough that i think it's high time to start spreading awareness of how horribly we chronically sick patients are treated in most hospitals and doctors offices. Its treated here more like some drug addiction then a horrible disease we had no part in giving our selves. Enough is enough. I have had er docs puff up with pride saying they took an oath to not give any chronically sick patient pain meds and he always sends them right back to their specialist. I get to a point what their thinking is but their rules are causing more and more people to be suffering needlessly at home when they need help. Ever tried just hopping right into your specialists office? Yeah waking up with something blowing up, being told to see you specialist and they don't care if it takes two months to get in to see him that is your problem ...apparently.
I think it's high time we started to speak up publicly about what goes in in the health "care" system that dropped the care. When did they revoke the Hippocratic oath? I am done with uneducated nurses laughing in my face telling me "you can't die from crohns or u/c" yes.. actually you can and i have lost several dear friends and a relative from this. How cold can you be?
I really feel a need no matter how sick i am to start making people aware there are other diseases out there just as serious as cancer. I have full on had a doc say that crohns and uc will never have the funding cancer does because it's not "sexy" since when is a horrible disease that kills EVERYONE at any age sexy?Disgust is the only word i can come up with that wouldn't be a long string of obscenities.
Any how i want to work on making more people aware how low hospitals stoop to ignore chronically sick patients. I sat there in the ER with 4 people who had been there over 8 HOURS waiting to be seen while everyone else was let back first.. not because they were in more dire circumstances.. no because they didn't have the worlds "chronically ill" on their medical records. Several finally just went home.. the triage nurse just laughed and said "fine if you leave it's against doctors orders its then your problem not ours" They just sit there toying with the people in agony who just want to get help. I wouldn't go off ONE incident i have seen this more and more and even worse at other hospitals. This needs to stop/ Since when is being chronically sick a crime? I have been treated worse then a bum off the street that was tweaking on something.. then full on drug addicts. I dont get the mind set that being chronically sick suddenly means "chronic waste of time" "chronic liar" Or "chronic whiner" the fact it's openly allowed to treat people this way in every hospital i have been in in the last ten years is more then appalling!
I don't know where to begin to get out there make people realize we are people who all had a life and weren't sick once.. non of us did this to our selves. We deserve common decency and respect, compassion just like anyone else!
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