These are stories of happenings and feelings about the Jpouch surgery, preliminary surgeries, and life without a colon. About a month after the surgery, I went back to Cleveland Clinic for a barium enema study to be sure the pouch didn”t have any leaks. He talked me through it, pointing to the tunnel just off my J-pouch heading into lady land.
When I got cleaned up and passed the waiting room on my way into the changing room, I was starting to feel again. When the tests were through, Mom and I tried to relax in the hotel, update friend-folk and kin-folk on the disappointing news, then put it out of our minds. This was at the high point of my patient advocacy efforts and I”d enlisted mom to help me document every gory detail, so before I passed out on the bathroom floor in the hotel, while she was calling for help I signaled for her to take a picture.
To summarize the following months, I had three total surgeries to fix the sinus cavity, had a wholly uneventful takedown surgery, and have had two stricture surgeries since takedown, the most recent of which happened on Monday. The only reason I”m writing this update is because of your sweet comments and concerns.
As always, I”m so grateful for the love and support of this community, and of my wonderful friends and family who see me through this every day. Then came more mechanical problems including prolapse (the pouch came out of my bottom so much that I had to push it back inside) and a twice-twisted pouch (ouch!), more surgeries, and a Crohn’s diagnosis. A former surgeon in Oregon who was on the right diagnostic track back in 2010, told me my rectal cuff was way too long and needed to be shortened, but said the surgery had a high failure rate (success less than 10%) and that no surgeon would attempt it, that I’d have to have my pouch amputated and have a permanent ostomy.
Once I had a pain pump (which has always worked in the past), and developed my usual itchy reaction to the pain meds, a new pain management resident wanted to eliminate it because I was itching. After this, my incision had to be reopened because of infection, I blew 8-10 IV’s (bent one with my scar tissue ridden veins) and failed 2 midline IV attempts (very rare).
The bad experiences have put me through hell, but as a result of surviving that, I’ve been able to meet all sorts of incredible, strong patients, and just maybe help them because of those hellish learning experiences. Lastly, I am so grateful to the amazing staff at Cleveland Clinic’s Digestive Disease Institute who have devoted their lives and work to patients like us.
When I got to Cleveland this week and had a scope in every digestive orifice, I found out the pouchitis, though getting better, was still active.
I think what I struggle with most is accepting that I am sick and that as much as I want to fight against it and not let it affect my life, that’s not a very realistic plan. Working on locating a compounding pharmacy to mix up some Short Chain Fatty Acid enemas J-pouch Jesus prescribed.
First concoction: Kale Smoothie with fresh strawberries, ginger root, lemon juice, orange juice, and parsley.
At age 15, I got violently ill one night, shaking and having uncontrollable blood + mucus diarrhea with a side of projectile vomiting.
A year later, at age 16, while making a scrapbook for my grandfather for Father’s Day, I got up to use the bathroom in our basement and stood up to notice blood running down my leg. The thing that frustrates me the most is that I feel like no matter what I do, no matter how much control I think I have, I really have none. Shortly after that, hubbs and I headed to Portland to celebrate a friend’s nuptials, eat delicious food, and enjoy Oregon wine country.
Like most things in life, IBD, internal pouches, farts, ostomies, are all just a matter of perspective. I’m loving my ostomy and if I can avoid diversion pouchitis, will probably keep Stella (my new stoma) for as long as possible.
When you lose someone that you truly love, you must be content with knowing that the past is the past, and that everything that happened to your relationship happened for a reason.


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Please explore the postings, and we'd love to hear from you in the comments, via email, or heck you might as well join this blog and click here to contribute yourself! Shen came in and we discussed his magical fistula healing serum (glucose and sometimes doxycycline) and wondered if he could juice me up while we were there. I got sicker and sicker, then after insisting on a slew of blood work to check for some of those scary-ass biologic side effects, I was diagnosed with drug-induced lupus and stopped the biologic.
Every single doctor from Shen to Remzi to the nurses, told me how horrible this surgery would be.
Despite politely telling her that this was normal for me (read my chart) and that I could deal with itching, but not the level of pain I was in before (because the epidural wasn’t working), she ignored me and removed it.
My ostomy was too active and I was losing fluids and nutrients, so I’m taking Immodium and am on a diet plan to help me retain potassium.
Do you struggle with relationships with healthy people who expect you to do more and feel guilty when you can’t? Even if you are a vegetarian and get protein from things like beans, beans may increase your output and hinder your absorption, so keep an eye on your output and slow your roll on the kale. Note that this doesn’t mean IBD, et al becomes your identity, but taking an opportunity to educate and advocate is a wonderful way to help others suffering with IBD.
If you are one of many of us in the world, and havent found or ever been in what you may consider true love, do not worry because you are not alone. As we grow older, some of us may notice that people that we thought would be in our lives forever arent there anymore, and as different newcomers enter into our lives the people that we once knew dont seem to be around.
Everyone I talk to has no idea how much it hurts and I'm so glad to have met someone who finally understands. You could talk to this person for hours and never get bored, you could tell them things and they won't judge you. I also had symptoms of a fistula and one showed up on an MRI, so I went back to Cleveland in March 2013 for a fistula surgery with Dr. Unsurprisingly, the pain was back with a vengeance, and Remzi’s residents were pissed. The mucus just runs out at its own desire and I’m alerted by the disturbing warm feeling.
Do you push yourself too hard to try to enjoy life despite your illness then end up paying for your day of fun? Having someone understand, just a little bit, of what we have been through and go through, somehow makes this journey a little easier. Missing someone, especially someone that we love dearly but cant be with like we would like to, is a difficult part of life that we all have to deal with. In order for a relationship to be excessively great it is important to find someone that gives you the confidence and support to succeed in life. Your quotes really help; I'm gonna keep 'em close to me so I can look at them whenever I need to. I was there for him through everything and this girlfriend that he has went back to 3 times now always treats him like crap..
Me with my big mouth decided to get on Facebook and message her to tell her everything he said caused me to lose him again. I took hand fulls of antibiotics for chronic pouchitis on a daily basis and rotated them when necessary.
I always incorrectly assumed an epidural was a single shot that provided hours of blissful numbness from the waist down.


How do you get others to understand that going to a yoga class and a low-key game night is a big day for you and that even though you slept all day the following day to recover, you’re still wiped out? Even after ballooning up from Prednisone, having worsening acne, sweats, moonface, hair growth, and insomnia, my poop was still coated in blood.
It would be NICE to have, oh, I dunno, a fucking YEAR to feel well before the shoe dropped. Nowadays, they insert something akin to a catheter or an IV into an area by your spine and you get a button (much like a pain pump) to shoot numbing meds and Fentanyl into your back. He just did a LOT of intense work down there, so it makes sense that things are all a twitter. I was angrier from a patient advocate perspective than I was for myself, but I was mostly just shocked because my previous experience had been stellar. I pray they will make decisions based on their health and what option will give them the best quality of life vs.
Even through doing that stuff may not be in my best interest physically, I simply can’t go on mentally if my life consists only of couch and channel surfing. This is the worst heartache I have ever had because he is not just some guy I can blow off and forget..
Luckily, I had a really sweet tech who played me Queens of the Stone Age to help block out the sounds of the magnets reading my messed-up insides. It didn’t matter how much medicine I took, new drugs, old drugs, none of them got me into remission. A distal and a proximal, which means that unlike an end ileostomy, stool can still go through the pouch from time to time, which means that I get to poop from my ostomy and my anus.
Do I proceed with the J-pouch redo, fly back up to Cleveland, spend more of our savings on hotels and flights, have relatives come stay with me so Rob can go back to work, spend more time away from him and my dog.
Although the enemas provided some relief, I was still passing chunks of mucus and blood, getting increasingly nauseous, incredibly fatigued, and had bad pelvic pain. Curiosity and eagerness to learn something new almost always outweigh a negative association. OR do I get the pouch amputated, get my rectum and anus removed, sewn up, and say sayonara once and for all to more intestinal surgeries? I love fresh fruits and veggies-I grew up eating it, which again, makes me think these efforts may be terribly futile, but, what have I got to lose? I'd rather be a has-been than a might-have-been, by far; for a might have-been has never been, but a has was once an are.*~*~*~*~*~*~*~* ohemgeee!! I developed diversion pouchitis which meant I was passing blood through my pouch, had low-grade fever, arthritis flares, and generally felt awful. After following a strict high-protein diet, coupled with gallons of Pedalyte, handfulls of immodium, and daily enemas for the diversion pouchitis, I saw vast improvement.
No matter what I do, no matter how many surgeries I have, what, or how many drugs I take, I am always going to be sick. I finally got help from a wonderful ostomy nurse and a shift of new nurses who knew the epidural was not working and hadn’t been for days.
Remzi and his fellows were fantastic, but some of the new blood on the pain management team were not.



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Category: Win Your Ex Back


Comments to «How to get back love from the person you love 50»

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