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Jenni

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Wellllll...I had my first surgery on September 1st. It was supposedto be my only surgery, but they had to end up doing an ileostromy.While in the hospital after surgery I was really weak and had to have two blood transfusions because I was white as a ghost and had lost so much blood.I remember waking up and the first thing I said to my parents was"do I have a bag?" they avoided the question so much that I knew i had one. I moaned and went back to sleep. When I woke up again my mother was crying and they were signing a release form to do transfusions, and I asked my parents if I was going to die. but luckily it was all ok and I left the hospital doign fine.I had the ileostomy for 8 weeks. It was a difficult situation for many reasons. The day I left the hospital they rushed me threw the process of showing me how to work the bag etc. and I was worried about getting the hang of it, and as I predicted it was anythign but easy. I have a natural crease on my stomach where the bag is supposed to stay, and because of that lovely deal the bag would leak out of that spot a lot. I ended up changing it almost everyday for 8 weeks. My skin went threw heck, I was so depressed, I was self conscieous abotu it and told no one I even had one except my boy friend.Otherwise it was my big secret. It was so hard on my skin, I would sit there trying to get it off crying because it would tear my skin or be irritated and red.But I got threw it, realizing how much worse it could have been, but I think the main reason it was so hard was because I had convinced myself that I would not have a bag. I should have prepared myself, but I eventually accepted the whole thing. The week before my next surgery however,things were not looking so bright. I began feeling soooooooooo sick, and I couldnt keep anything down,so I wouldnt eat, and even though I wasnt eating my ileostomy seemed to be pouring thigns out like crazy. Well I went to see my surgeon, who told me if by the next day I couldnt keep things down, I most likely had a blockage and would need to go to the hospital. Well the next morning, my mom woke me up and I went in the bathroom to empty my bag. Well for some reason I didnt lock the door and my mom heard a loud crash and started beating on the door, but when I didnt answer she barged in to find me passed out on the bathroom floor. WHen I woke up I had no idea what had happened, but I had hit the bathtub when I fell and my back was all swollen, and there was "stuff" everywhere because I fell before I could empty my bag. Well needless to say, they made me go to the hospital. I got their tuesday and wasnt allowed to leave until friday, because I was extremely sick and by wednesday night my temperature was upto 103 and they could not get it down lower for a day or two. thigns were not looking good, and they had no idea if they would be able to do surgery or not. but i got out friday, and they carried out my tests on tha next monday and did surgery on wednesday as predicted. everythign went well, but being on the pediatric floor, i had three different roomates all under the age of twelve and they were all really mean and rude! haha.well i was out of the hospital by that saturday, and actually went to church the next morning. at first I was nausios alot and threwup quite frequently. Then I went from going to the bathroom like 8 times, to like 15 times and there was blood...well i was really worried. I mean seriously there wasnt sposed to be blood and i wasnt supposed to go that much! well i called the surgeon because i was also having problems with burning, and i made the mistake of drinking a strawberry smoothie which made me siiiiiiiiiick. well they confirmed that i had pouchitis which really isnt a bad thing. it means that my "j-pouch" or the loop they made with my small intestine is working so well, tht my body actually thinks its my colon. but it was puttin the bacteria ur colon needs in the pouch and the pouch couldnt handle it so i was sick. well i told the doctor that i could not take flagyl, but the prescribed that anyway, but my parents wont let me take that because last time i was violently ill wen i took that. so they gave me something else, which was not much better because i threw up like everyday.I am now off of that medicine and feeling alot better, but even so it is still an adjustment.I went to the mall last week, and I am really skinny so I was trying on new clothes and I found this really cute red sweater to wear with a new dress I had bought. so i tried the sweater on, and not thinking that it came just past my chest walked out of the dressing room and couldnt find my mom. well there was a group of girls standing their and suddenly they were all staring at my stomach,pointing and looking and giving me looks like i was a freak. i ran bak in the dressing room on the verge of tears,only then realizing my scars. i was done labroscopicly so i dont have many scars. i have four, one right abouve my belly button,one where the ileostomy was, one where they had the "grenade" as they called it, and a low one where they removed my colon from. it kind of looks like a smileyface, and even though they all looked at me like i was a freak, im proud of my scars. They are apart of me, and in fact my boyfriend thinks they are adorable, and he was not so happy that they did that.but anywayz i am doin alot better, im healthier, and am off prednizone and all other meds.
well thats all
Jen :)
 
Hey Jenni, glad to hear you're doing better. Sounds like you've been through a lot this year and I'm glad you've come out of it with a positive mental attitude! Makes a big difference when you're not feeling well. Hope things only get better.
 
Hi Jenni, what a rough time you've had. Glad you're on the mend now. Thought it was funny where you were explaining the bit where the bag sat right in a crease on your tummy, as mine does too and its a pain in the ****. I too am due to have a reversal, but mines a reversal from an illeostomy back to going to the toilet "normally" as I have had part of my small bowel removed. Hope you continue to get better and don't worry about the scars, the more upset you seem the more people taunt. Hold your head high and think of them as telling a part of your life story, they're part of you and nothing to be ashamed of. Anyone who wants to stare obviously thinks you are extremely interesting:)


Ruth
 
Hi Jenni, you have seemed to go through a hard time. I am glad you are feeling a bit better. I have never had an ostomy but what I have heard is that you just have to make yourself not worry about it. Just make yourself better and that is all you need. Best of luck
 
thanx. and i am so happy that the ostomy bag is gone. u kno i never thought i would b so happy to be able to poop....specially having IBD haha. but when I had the bag I referred to it as "Mofo" and the day I went back to goin to the bathroom normally was the best day of my life! and i hate telling people i had this surgery cuz the first thing they always ask is "Do you have a bag?" and when I say no, its all internal I go to the bathroom just like you...they dont believe me. its really annoying, and i think im just gonna start flashing them to prove that I do not have a bag. haha
 
ruthymg said:
Hi Jenni, what a rough time you've had. Glad you're on the mend now. Thought it was funny where you were explaining the bit where the bag sat right in a crease on your tummy, as mine does too and its a pain in the ****. I too am due to have a reversal, but mines a reversal from an illeostomy back to going to the toilet "normally" as I have had part of my small bowel removed. Hope you continue to get better and don't worry about the scars, the more upset you seem the more people taunt. Hold your head high and think of them as telling a part of your life story, they're part of you and nothing to be ashamed of. Anyone who wants to stare obviously thinks you are extremely interesting:)


Ruth

haha they must think that i am. and my reversal was also to go bak to normal.
 
Jenni,

I can't believe what the past 2 months have been like for you! It definately could not have been very easy, but I am glad that it is over with and the future should be much better!

I also had to have 2 blood transfusions (and when I had them I could not be on TPN.... I was so hungry and wanted my TPN back during that time :)). I also had lapriscopic surgery.

The girls were probably just shocked to see the scars and everything. After 6 months, my scars have healed so amazingly well. It really only looks like one (out of four) is remaining. So do not worry about them, as they will definately get a lot better.
 
You've really had a rough go of it Jen.
You hang tough and stay well now..
good to hear you are now off of your meds.

Sending healing hugs your way~Nancy
 
Hye Jen,

Thanks for sharing your story, you have been goin through the mill a fair bit with stuff but things lookin like they are heading in the right direction for sure. I am very pleased for you
 
Wow

Sounds like you've had a tough time. I feel for you, big time! I can't tell you how many surgeries i've had and uttered the words, "do I have a bag" When I had my first transfusion, they didn't put blood in me with thinners and i clotted throughout my body. ended up on the floor with all the poor diabetics wondering they would save my foot/leg. luckily i made it. i only have a few inches of intestines left, and they are severly ulcerated. when i had a temp bag (for a reversal when they removed my colon) i hated it. every 15 to 20 minutes i'd have to empty the bag. fun! living your life to empty a bag. But i guess i should be happy i'm living. I have two more surgeries this winter, keep putting them off. they want me to see a psychiatrist to make sure i can "handle" the fact that i just may end up with a bag. again- if i had more intestines, it wouldn't be as big a deal. but after 13 or so surgeries, there's not much left to attach to. i'm glad to hear your doing ok. tough to be single and go through all this on your own. i have family, but i'm afraid of ever finding someone to share my life with is lessoned with all my "baggage". good luck, keep healthy!
 
Sheesh, Jenni, tht's a lot to go through in such a short time. Glad it's working out for you, though, and that you're feeling better.

I was kinda proud of my scar in the first year or so after my surgery. It starts several inches above the navel & goes down to the pubus, but was pencil thin & you'd have had to really look to see it after a while. Twelve years on a very starchy diet & it looks like my Mom's C-section scar after four kids & years of obesity. Oh, well ... I wasn't planning on ever wearing a bikini again, lol!
 
Jenni,

I'm so glad to hear that you are adjusting well to not having the bag anymore, especially after the pouchitis. I recently had my entire colon removed after developing toxic megacolon. Since my surgery was done on an emergency basis, it couldn't be done laproscopically, so I have about a 9 inch scar that runs straight up my stomach. I have had a bag since then, which is about 5 weeks now. It leaks all the time because the incision prevents a good seal around the edges, and since I just went back to work last week, I am freaking out. I ended up having to change the bag at work and did okay, but it is so stressful. I have another appointment with the surgeon in a month, and at that point if I am recovering well, we're going to schedule another surgery to create the pouch so that I can be rid of this. I can't wait to wake up and look down at myself in the shower and not see the bag hanging off of me! The second surgery will not be done laproscopically either, since they want to use the same incision they created before, so the recovery time will be another month or so. How was your recovery from the pouch surgery? Was it painful to start going to the bathroom "normally" again after having the bag?
Best of luck!
 
Aww hun i feel bad that you had to go through all this and i didnt even know to help you through it.

I hope things get better and you know im here if you wanna talk
 
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& Welcome Aboard ... I am sure that you will have a great time here and you will make plenty of friends too so jump right in and have some fun & do come by the longe sometime and say HELLO !!
 


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