I’m so sorry that I haven’t been posting a lot lately. My family and I are up in Lake Placid until August, so I’ve been a bit busy but all is well and I hope all of you are doing well, too!
I just realized that my final surgery is exactly a month from today! It’s been scheduled for August 2nd, and I’m so excited!
I’ll try to update more in the next few weeks, but I apologize again for the long delay in posts.
Hope everybody is having a great summer!
Yesterday, some friends were at my house and we were discussing my surgery and my scars. I have about 11, ranging from tiny dots from PICC lines on my arms to my 6 inch bikini line incision.
They recommended that I use Mederma once my scars have healed to cover them up.
You know, I barely even thought about it before I said no to them. I never want to cover up or erase these scars. They are a reminder of what I’ve been through and how strong and brave of a person I can be.
I wear my scars with pride, and show them off to anyone willing to see them.
Sorry that I haven’t posted in a while, I’ve been relaxing and recovering!
I got home on Wednesday, and it is a fantastic feeling to be in my own bed…if only I could get out of it without feeling sore.
I have to admit, I’m so happy that I’m through 2/3rds of my surgical process…but the soreness, the soreness, the soreness.
Have any of you guys been through the J-pouch surgery, or any other type of Crohns/Colitis related surgeries? Let me know!
I’d still love to receive personal stories//questions!
Have a great day, everyone :)
My surgery on Friday was very successful and everything went according to plan! The doctors had to make a small bikini line incision, which I have to admit, hurts like hell. I’m recovering well and walking at least 3-4 times a day and can now eat full liquids like yogurt, pudding, and some coffee (which I love).
I have a JP drain and a catheter right now, which kind of suck, but will be taken out in a couple days or so. My new stoma, which I’ve named “Walter” is doing just fine! So far, everything is going great - besides the soreness..but that was expected!
Here are a few pictures my parents took that I thought you’d all enjoy:
This is the hospital that I’m at right now - The Cleveland Clinic in Weston, FL. Fabulous place and gorgeous as well, right?
This is me, about to go into surgery!
This is me…on tons of pain medication…acting a bit loopy about to go into surgery hahaha.
Thank you everybody for your support! I’ll keep posting as much as I can!
Anonymous asked: I would first like to thank you for making this site, its great that there is a tumblr now that ppl can share their stories and not feel alone. Second, with out feeling so stupid I am new to tumblr and don't know how to go about posting my own story or comments. I would like to contribute to your site and help out if I can. thanks again for everything, hope to post soon : )
Hi! I’m so happy that you like and are willing to support this blog! If you want to submit your own story or ask questions, you can click either the “Submit” or “Ask” links on the top of the page. Thank you so much! :D
lost-inpacifictime-deactivated2 asked: ah i'm so glad i came across this blog :) i was diagnosed with UC at age 11 and had my surgery at age 15. luckily, i only had the ostomy bag for a month. but, after my reversal surgery, i had some complications and still to this day (3 years later) i have chronic bloatey stomach pain that my doctor hasn't figured out. :-/
anyway, i hope your next surgery is successful! :)
I’m glad that you’re glad! :D
I’m sorry about your complications, but thankfully you got the surgery done at a young age and have plenty of time to work everything out. I’m sure they’ll figure it out soon!
And thank you! :]
This is me, in my new bikini, with my bag!
It doesn’t bother me one bit, and I feel awesome.
Life is good.
*Please disregard the crappy photo quality. My phone takes bad photos*
I saw some people do this and i was inspired to tell my “Story/Battle” With Crohns Disease.
I am 19 years old, I was was diagnosed in December 2003, so about 8 years I have had this disease. I was 11 in 6th grade and I had the flue, then a sinus infection, then for some reason I was still sick. I ended up going to my doctor countless times he said ur just recovering. One day I was throwing up over and over non stop and went to the emergency room. The doctor there knew just from looking at me, I have crohn’s Disease. So immediately I was put on a whole bunch of different pill, ya’ll probably know the ones (Prevacid, Prednisone, Flagyl) They also started me up on IV Fluids a drug called Remicade. For the first couple of years nothing was working I even eventually had to give myself shots of Humira. When that didnt work there was more pills n more test. At one point I was taking 30 pills a day not including the vitamins n iron ones. Eventually my crohn’s went into remission and I was feeling MUCH better no stomach pains I was down to 3 pills and my monthly IV. I started college and was even GAINING WEIGHT haha. But that didnt last long a month later I had stomach pains again…. Went to the doctor and talk of surgery came up. So i was hospitalized but when I woke up i had a inch of colon taken from me and was given an ileostomy bag. I didnt cry at all through my case, (The Test, The tube down ur nose and throat, the heart monitor) But this bag even though they told me it is temporary. Just looking at it and feeling it angered me, the fact that it came down to the point of surgery. The doctors always told me “You could lose your intestines and could have a bag on your side” They said this to scare me to take my meds. Well I did everything they told me to and it happened anyway. I hav had this bag for about 6months now which it should be reversed in the coming weeks. Which i am lucky and blessed but still…. I have never felt like i couldnt be myself, but this made me question who I am, what i want to be, who i can trust, Evey thing in my life. These past six months have been hard… It is hard. People say it completely changed who I am. My temper my perception, how much I really just dont Give a fuck. I mean how could I remain the sane, I had to change the way I live so it had to adapt as needed. Even when my surgery is done again I doubt i will give to fucks to anyones bullshit. I have bigger things i am dealing with.
I am Robert Williams, and I have Crohn’s
Learn to live with the Pain, Because It will never go Away.
wreckedonpoptarts asked: Hey everyone! I'm Katy. I thought I might as well type up something about me haha. I'm 19 (turning 20 on July 3) living in Chicago and going to school here. I was diagnosed when I was a freshmen in high school, so 5 years ago in July.
The stomach flu was going around in my school at the time, and I was out for 2 weeks. When everyone else was getting better, I was getting sicker and my mom, the nurse, knew something else was wrong. I got the flu in September '09, and didn't even get my colonoscopy and endooscopy until the next May. Those months in between I lost 45 lbs (I was around 150 to begin with), never kept anything down, throwing up constantly. My dad thought I was dying and the doctors were keeping things a secret, which didn't help family morale.
At my lowest point, I was 104 lbs and standing at 5'6, I was a skeleton. After finally being diagnosed in July, I was put on Pentasa and 6mp. And 5 years later, I am still on those, along with Bentel and countless vitamins.
2 Decembers ago, my freshmen year of college, I had a fistula developing but luckily caught it very early. I still had problems sitting.. in class I had to sit on my side which still hurt like hell. And this last January I had a kidney stone. I can say my kidney stone pain was almost if not worse than my early stages of Crohns pain. In other words, winter months do not like me.
As far as foods go, I can't eat more than 3 baby carrots or pieces of apple (my favorites) without running to the bathroom. No popcorn, greasy foods, all the good stuff. Recently I've been having a lot of constipation problems but my doctor said thats not a Crohns problem, but a diet problem. Which I understand since being in college, my diet is literally all sugar and carbs. Anyone else in college with a shitty (pun intended) diet?
My next surgery is six days from today..it’s the second stage of my three stage procedure. They’ll be constructing the J-Pouch and I’ll still have my ostomy bag until August.
I’m not worried in the least bit because I trust my doctor completely. That’s a VERY important factor if you have to get this surgery, especially if you want it done laparoscopically. Just have a great bond with your doctor and trust him/her beyond belief.
To be honest, I’m just anxious about being back in the hospital again. Before I had my surgery, I was in for five weeks…probably the worst five weeks of my life. I hope that this time is a lot easier and more relaxing, considering I’m only going in for surgery and then staying 5-7 days.
I’ll probably be updating from the hospital, so that will be interesting haha!
I still haven’t gotten any questions/submissions from anybody. It’s understandable if you’re embarrassed or scared to share your story. But I would absolutely love if somebody contributed to the blog!
Thank you all!