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Swimming Ten Miles Down The Nile

For the longest time I have felt ashamed of myself and have been in complete denial. I like to say I was swimming ten miles down the Nile.  Today I feel different.  I have been a member of this fabulous site for maybe a month and I have read many life stories that are quite similar to mine.  I hope that my story helps someone else.

At age thirteen I experienced my first bout of stomach problems.  I  was forced to school day after day with pain and discomfort that my mother originally thought was non existent and in my head. She basically thought I was trying to get out of school as some children try to weasel their way out of school but this was not the case.  She eventually took me to the doc and then to my first Pediatric GI Dr. where I was first diagnosed with Chronic Ulcerative Colitis.  They treated the flare up.  I was pumped full of steroids and antibiotics.  Unfortunately the fare ups just kept coming.

Age sixteen was very memorable!  This was the first year where blood started appearing in my stool.  I explained to my mother what was happening and she brushed it under the rug explaining to me that many people can get a little blood in their stool from time to time and its perfectly normal.  I brushed it off too.  I was still able to go to school and function but the bleeding progressed.  The toilet would be full of dark red blood water at times.  I finally had enough and told my mother to come look in the toilet and see the blood.  It definitely started to scare me.  She completely freaked out!  My mother was the type that if she couldn’t see anything wrong on the outside then we were okay.  Also I was an A student,  took accelerated classes, president of my art club and attended Navy JR ROTC so i was encouraged by her to keep going and fight through not feeling well.  I guess it was my fault for not expressing the amount of blood in the beginning and by that time I was pretty much immune to the stomach pain.  Instantly she took me back to the doctor where I met Pediatric GI Dr. Whitney at Medical City Dallas.  She was so caring and sweet to me.  Genuinely a caring doctor.  She expressed to me that she was shocked to see so many young children coming in with GI issues that would only happen when your older.  Once again I was pumped full of meds. I counted over a 100 pills a week i was taking.  Iron, steroids, vitamins, antibiotics etc. At that time I was on home bound schooling where the teacher would come to my house for my lessons, three months on and three months back at school freshman and sophomore.  I think the toughest part was not being able to keep up with my classmates and friends.  I had to quit ROTC, lost my presidency with the art club but I did keep up with my grades.  It became pretty lonely at times and I kept to myself a lot. 

Age seventeen was pretty tough!  The bleeding continued.  My face was swelled up and I had weight gain due to all the Prednisone or steroids. I was so tired of taking pill after pill.  Dr. Whitney finally expressed to me that there were options to give me back some kind of quality of life.  A total colectomy with option one being an Ileostomy and option two being an internal J-Pouch.  After meeting with Dr. Macaluso, GI Surgeon Medical City Dallas,  I opted for the internal J-Pouch.  It was a pouch constructed out of my small intestines and attached to the sphincter.  Dr. Macaluso was shocked and described my colon to be as thin as tissue paper in some sections.  While everything healed i had a temporary ileostomy for three months.  I remember it being one of the worst times of my young life.  The ostomy constantly leaked and burned my skin leaving me in excruciating pain at times.  Also the first day I was home I vomited from the pain meds and busted open my incision.  My mom had to clean it and pack it with gauze until it healed from the inside out.  The incision healed and I had the reversal done before my senior year of high school.  The J-Pouch worked but I still had to empty often and there was some cramping.  I figured it was normal and I didn’t put much thought into it.  I eventually graduated and even got married.  I continued on my life as normal as possible.  Just had frequent trips to the bathroom.

Then at age twenty-one I was diagnosed with Pouchitis in the J-Pouch.  I was once again treated with meds.  My husband and I grew apart and we eventually divorced.  I spent the next 3 years dealing with J-Pouch problems until finally I was re- diagnosed with Chronic Crohn’s Disease.  I moved to Abilene and went through many small town doctors that only could help me by medicating me with auto immune suppressants and tons of other meds.  The only solution was to have the J-Pouch removed and it frustrated me because it seemed like all the doctors wanted to do was treat the problem and not solve my problem.  My body was rejecting the J-Pouch.  By that time I was out of a Job and too sick to move.  Spent a year in misery with no treatment.  I found myself on the indigent program.  I developed fistulas and even a vaginal fistula overnight it seemed.  The GI surgeon in Abilene did an emergency ileostomy the next day.  He explained to me that he was not able to remove the J-Pouch because there was so much active Crohn’s and it was so diseased he couldn’t touch it.  With the J-Pouch still diseased it continued to leak and secret mucus and i still had the cramping and pain.  I was miserable! I went through doctor after doctor.  One GI surgeon refunded my consultation money and told me there was no way he even wanted to attempt the surgery.  Finally I found my way to Dr. Fleshman at Baylor Dallas!!  He saved my life and was able to remove the J-Pouch.  He even found 6” of bowel at the top of the J-Pouch that he added back to the bowel that i had left, a grand total of four feet.

I healed and went back home to Abilene.  Everything seemed ok.  Three months out and I was installing a wood floor even.  Then it seemed like maybe I gave myself a hernia.  I was beating myself up and figured I messed up the surgery by doing too much.  The pain turned into a huge lump in my stomach the size of a grapefruit.  I was care flighted from Abilene back to Baylor Dallas on Christmas Day 2015.  I was medicated pretty good so I was not nervous at all.  The pilot was even letting me take pictures of things he pointed out that he thought i would want a picture of. The next day my partner for four years called it quits through text message.  He said he didn’t want to have to take care of anyone!  Broke my heart!  It was a pretty low moment for me.  Thankfully my mother was there for me once again.  Come to find out the section that Dr. Fleshman tried to save was still diseased and it developed holes that was leaking gas and stool into my abdomen.  I remember I couldn’t eat and they had me on TPN for thirty days.  After ninety days in and out of Baylor Hospital Roberts Floor fifteen I was finally healed! I had three and a half feet of bowel left, a tummy tuck on the house, a barbie butt and my stoma was relocated from the lower right abdomen to the upper left. On top of all that, I developed an opioid dependency while I was there and went through the worst withdraw getting off that stuff!  Went cold turkey and let me tell you, my blood was boiling for a week straight!  I was miserable but I made it with no addiction.

So here I am!  I have experienced some scary things!  Surgery, pain, shock, pic lines, medication, addictions, withdraws, side effects, omitting foods, adding foods, extreme weight gain, exstreme weight loss, loosing my teen years, being abandoned by loved ones in sickness, insecurity, finding clothes, finding the right doctors, waiting for treatments, finding the right ostomy bags, outrageous medical bills etc. One full year later and I am living my life like I never even experienced any of this.  I find that sad now that I am reflecting.  I am telling myself I need to embrace my history!  This is my story and I am not in denial anymore!  I am not perfect and I can not live as if this never happened to me.  I am learning a lot about myself.  Number one thing I am learning is to love myself!  I am learning to love my story!  I am here!  Dear God, I am here!  I am one of the lucky ones or blessed I should say!  So here is to looking forward to the future and embracing my past!

See all blogs by thisgirlyisbusyliving
Comments:
Bill : Hello thisgirlisbusyliving.
Congratulations! On having such a powerful story to tell and for telling it in such an interesting way.
With such a determined and positive attitude, you are an inspiration to us all and thank you so much for sharing your story with the rest of us.
Best wishes
Bill
DonBrown1943 : This girl: WOW!! I thought I had seen tough but you have got to be the toughest girl I have heard of to go through all that and be feeling good today! I am proud to know you, at least through the group. I live in Arlington and if we ever encounter each other, my wife and I would be pleased to enjoy a beverage of your choice with you. You are very inspiring and I can tell it will get better for you because you will force it to be better! Please stay in touch with us. Don.
DayDream13 : Glad to hear things are looking up!
thisgirlyisbusyliving : HI Bill! Thank you so much! I am hoping to inspire as many people as I can!
thisgirlyisbusyliving : Don you made me blush! Your comment put a smile on my face from ear to ear! I would love to run into you guys one day! Thank you!!
thisgirlyisbusyliving : DayDream you girl i am sure can relate to a lot of what i have been though! Thanks!!
DayDream13 : Gotta make the most of each day. try to hold your head up high and keep racing along! Your welcome!
CascadianAaron : That is an amazing story, thank you for sharing. It's so hard to describe the day to day mental and physical challenges to anyone unless they too have been put through this ordeal and come out the other side alive but with an ostomy. On the opioid side, same issues (though not cold turkey) but I have moved on to Cannabis Oil for pain relief. This is not something that gets you high, it is high cannabinoid compounds with very low THC so it provides pain relief but doesn't leave you in a fog. For daily pain relief, this works better without side effects then OTC NSAIDs and is much easier on the liver.
thisgirlyisbusyliving : Thanks CascadianAaron! I really do wish Texas would get on board with medicinal Cannabis. Its approved but only for patients with seizures. I have never tried CBD oil and I think its legal. I have to look it up and see. I mean it makes since that the body does better with CBD, we do have cannabinoid receptors. I'll keep that in mind. First time in my life i am pain free and med free! The opioid epidemic is very sad!
Pooter : Your story sounds just like mine. At the age of 12 I had a ileostomy. I Had U/C. The doctors did not think I was going to make it. Was in a coma, and my preacher sneaked into the hospital every night to visit and pray for me. Growing up was difficult. I did not go to school because I was always teased by other students. I did get my GED. Adult Life was not bad. I did get married at the age of 22. Wife passed away in 2001. I'm with another wonderful woman now for 14 years. I have had 3 Parastoma surgeries and now have another hernia, great fruit size. My body rejected the mesh, due to I have Chron's. Dr. does not want to do surgery due to no way to attach to the abonable wall. I just thank God that I'm alive and well.
thisgirlyisbusyliving : Hey Pooter! You have been put through the ringer too. Keep the faith and keep fighting. You are blessed to have someone by your side but even then we are still not alone! The man upstairs is my number 1!
DonBrown1943 : This girl, my son has slight brain damage due to a skull fracture he suffered in a terrible accident in 2010. It's hard to see it, but he is disabled due to not being able to follow the logical consequences of an action. He has training as an HVAC technician but can't hold a job because he is no longer able to troubleshoot. He told me that the oil is legal in Texas and he smokes it to help with his depression and pain. He takes medicine to prevent seizures after the accident but the medicine makes his depression worse and makes him feel bad. He says the oil makes him feel better. Just passing that on for whatever it's worth. Don.
thisgirlyisbusyliving : Thanks Don! I read a bit about it and think I might get some to keep on hand. Continued prayers for you, your son, and your family!
NotDeadYet : Ok, thisgirly, sorry but I don't know what a J-pouch is but maybe some of the others were too polite to ask? What is a J pouch? (I have a colostomy, my stoma is right side at the belt line).

Your story is so important to all of us, and we all appreciate your writing it so well!
Your whole life you've dealt with so much more pain than I have. I have terminal cancer and a colostomy, so I'm going forward into the pain that you're leaving! But even so, nothing I've dealt with is even half as difficult as what you've had to deal with. And it probably never will be.
Hat's off to you, and congratulations on your physical triumphs! My sister (now deceased) had cancer, and just before she had her leg amputated, her boyfriend of 4 years ditched her. "Oh, I can't take it!" he said. He showed up at her funeral. I could not approach him, what would I say?
I just think you're SO amazing, thisgirlyliving, you went through all of the difficulties that we're going through but you did it AS A KID!
Thank you so much for reaching out to the rest of us even as we're just part of your healing wake.
There are a lot of ostomates that could use your help and stories. Use your talents!
thisgirlyisbusyliving : NotDeadYet: Thank you from the depths of my heart! I am sorry for your loss and remember, God said vengeance is mine! It will come back around on him ten fold! It cost nothing to be a decent human being!

A j-pouch is not practiced much I hear because the body tends to reject them quite often depending on your disease and being misdiagnosed. It happens often with IBS patients. The procedure starts with a total colectomy, removal of colon, anus, and appendix. The small intestines is then looped down and stapled into a j-pouch shape. A hand crafted make-shift colon. A hole is cut at the bottom of the pouch and stitched directly to the sphincter. Since it is inside your lower abdomen, you can still feel all the sensations of needing to go to the bathroom. Its appealing to many because you get to avoid the ostomy and the supply cost that comes along with it.
LadyHope : Thank you for sharing your story with us. It is very much appreciated and provides much support. This journey is stressful at times and it is comforting to know that others understand this path. Thank you again. Sincerely, LH
thisgirlyisbusyliving : There is one more thing, LadyHope. We are all put on our journey for a reason whatever reason that may be. On my journey i have read a great number of stories through the years. Stories that have happy endings are the ones that give us all hope! Thank you for reading my story. I am looking forward to reading your story.

Sincerely,

Thisgirlyisbusyliving
Primeboy : I could not agree more, busy girl, that we are all put here for a purpose. I would add just one collrolary. The friends we are given here in our lives were also given us for a purpose too. Take no one who comes into your life for granted, especially here. As an old Irish song went, "To everything there is a purpose under heaven." When you meet those special folks, offer a wish of "cead Mille faulte",which means a thousand welcomes.
LadyHope : Yes we are! Thank you again for your inspiring message...a thousand welcomes. Sincerely, LH
Primeboy : Yes, a thousand welcomes to you 'Thisgirlisbusyliving' because you are here to remind us that God is still watching us. Socrates said that "the unexamined life is not worth living." You took the high road, however, and argued convincingly that the examined life is really worth living. You're in great company, Thisgirl. I remember a TV preacher on primetime (Bishop Fulton J. Sheen) who would tell us each Thursday night that life was worth living. You must be one of his disciples carrying his message far and wide. People need what you have to say. Please don't stop. You were sent with a purpose and I will keep an eye out for your posts.
PB
thisgirlyisbusyliving : Good evening Primboy,

You have made a very exciting relation but I am not comfortable being compared to someone so much greater then little ol' me. With every bone in my body I feel life is worth living!! Why is life worth living? We get to create, relate, play, grow and realize!

TGIBL
DonBrown1943 : Plenty of reasons for every life to be valuable and, for those who realize all this, to be happy! Thanks, TGIBL.
NotDeadYet : ThisGirly!
I was at the doctor's the other day (not my REAL doctor, just the hospital where I do my clinical trial.) Anyway, the "Fellow" there (it's the last stage of internship before you are an independent Doctor but most of them are AMAZING!) she mentioned "J pouch" for me. "Oh, I just read about those, but I wasn't too clear, so could you explain that?" I said, thinking "Yay Ostomate ThisGirly!"
That's the thing, ThisGirlyIsBusyLiving, when you say things, it can cause a ring-ripple in the pool. And yours made my ears perk up "J Pouch?"
If you hadn't mentioned it, I think this Fellow's comment would have slid over my ears.

My Fellow explained MY J-pouch was the part of my colon that, as you come from rectum to 8 inches of colon, was folded over and secured, as a way to make a future reversal possible. Nice save.

First I heard of THAT one. My colon had a million spots of cancer on it, so you would guess that they wouldn't keep any extra length, especially if it was riddled with cancer. I need to ask. . . Never seen "J pouch" in any records that I've seen, so either Fellow-in-other state sees records that I don't, or she's assuming stuff and relaying it to me as fact.
Hmmmm. . . I need to tame my mischievous impulses!

But I do now think that a "J pouch" is just where they fold over a part of the intestine to save it for future possibilities.
Thank you, TGBL, you made me look twice!