Post

Gina's Story of Total Colon Removal

GINA'S SUCCESS STORY OF LIVING WITHOUT A COLON   I was a typical teenager that only wanted to live off hamburger, hot dogs, french fries, Suzie Q's, sunflower seeds and Bologna sandwiches. By the time I was 12 I was having constipation problems enough that I would take an occasional laxative to keep things moving along. I had quite a stressful life, I was a childhood entertainer, ran way at 15 and was already experiencing with drugs, got married at 16 the first time, had two miscarriages by age 18 and was pregnant with my first child at 19 years old. I was always having pain in my stomach but just chalked all up to the rough life I was living. Most of the time I would fall into the category of anorexia/ Bulimia because every time I ate it would hurt me so I would either not eat or throw it up so that it would not hurt my intestines while digesting.
While pregnant I started to have even more pain sort of like contractions then I would run to the bathroom only to have mucus come out with a small amount of bowel movement. I just figured once again that this was all to do with pregnancy. A year or so after having the baby C-Section, I continually had more and more contractions with the mucus coming out of my rectum. I decided to see a primary care doctor. When I did he sent me straight over to a colon doctor. Upon arriving at the colon doctor, I was led into the patient room to tell my story. As soon as I was finished he asked me to put a gown on and stated that he was going to do a small test and take some samples. I changed into the gown as they came in with this big long snake looking machine that scared me half to death. he saw the fear on my face and encouraged me saying if you relax it will not hardly hurt at all. Ha Ha!
They instructed me to lay on my side and relax as they proceeded to snake that thing up my rear end all the way through my infected large intestine. I screamed and cried more and more as the went farther and farther up saying hold on just a little bit more and we will be done.
Finally it was over and he left the room. I determined that I would NEVER have that test again!
I was shaking and crying still after getting dressed upon the doctor returning to give me the results.
The doctor acted as if it was no big deal as he told me that I had colitis and that I needed to stay off the spicy foods(which by the way I did not eat anyway). Then he stated that if I did not stay off spicy foods that it would turn into Ulcerated Colitis, then into possibly into cancer within 20 years. He then stated there was No Cure for it.
I felt as if I was delivered a death sentence. No cure? I wondered what could be causing it since I did not eat spicy foods except for Ketchup with my junk food. As a young teen would do I pushed it out of my mind and continued on with my life living the rough bar singing lifestyle of an entertainer. Through the years I went through 2 divorces one more C-Section 3 more miscarriages, and a total hysterectomy by age 26. I was doing drugs, drinking with the attitude of "Well if I am gonna die of cancer anyway, I might as well go out in a Blaze Of Glory".
As well it seemed as I did more and more drugs it would lessen the pain I was going through as the colitis turned into ulcers that would bleed out of my rectum many times a day.
I ignored the fact that I was sick.
Finally at the age of 33 my sister had been talking to me trying to convince me to go to another doctor. I had an experience one morning after being up all night doing cocaine to where I was overdosing there was a Spiritual person speaking to me telling me how to pray. I prayed and
needless to say, I was delivered of the drugs that very morning. I decided quickly that I would ask my sister if I could come to Missouri and stay with her in an attempt to get my life together.
She agreed and I loaded up with in a few days and left Nashville Tn.
By this time I was bleeding so much from this disease that I had anemia.
While living at my sister's there were several times that I would be in such horrible pain and bleeding that I would go to the emergency room and they would run IV steroids through me and send me home with a colon doctor's name to follow up with.
I would follow up with the colon doctor only to find out that they could not do much because I did not have any insurance, so they would send me home with more steroids to take. I started to develop a problem with the steroids and irregular heart beat so I just decided to not take them.
I was not once told to go on a different diet or anything other than take steroids. In fact they did not even ask me what I was eating most of the time.
I was at the point that I figured that I would just have to live in pain as a slave to the bathroom 15 to 20 trips a day when one night, I began to have contractions one after the other and when I say contractions these were like a woman in labor pains that I would have every day of my life.
This particular night we had the ambulance come to get me and I asked them to take me to a hospital in St. Louis because so far I had no luck with the country hospitals. They took me to the closet one called St. Luke's in Chesterfield Mo.
I was taken into have x-rays and more then they called a surgeon to come in the middle of the night. the surgeon had them wheel me over to his office and he was like my Knight and Shining Armour. Just based off the x-rays he explained that all of my colon was diseased and could not be saved. That I would have to have a surgery called the Ileal Anal Reservoir, or the regular surgery that consisted of the total colon removal and living with a colostomy bag on my side forever. He explained that he would try to do the reconstructive one called the Reservoir that could be taken down at the end of 3 months or so when I was well enough and then I would not have to wear a bag anymore but there could be the chances of the other surgery, also a chance that I could wake up to an open stomach because of the infection needing to dry up, or I could die in surgery.
He stated that he would like to admit me right away and start me on IV antibiotics and Steroids for two days to reduce the inflamtion because if he did it right then I would be left open for sure.
We decided on doing surgery on early Monday morning. I asked him the dreaded question.
But Doctor what about me not having any insurance?
I will never forget what Dr. Todd Arends said to me, He answered with I am not concerned about that, I am concerned about your life.
I agreed with him and I was ever so eager to get that colon that had hurt me for so many years out of my body not even thinking about the consequences or the recovery.
Monday morning came and I asked for the Chaplin to come in I believe two times. He prayed for me and read the Psalms about Walking through the Shadow of death I will fear no evil. Then as my sister held my hand as I clutched the Bible as if it were God itself, they took me into surgery. Before going into the operation room they gave me a little IV cocktail that relaxed me and
then the next thing I knew I was waking up about 6-7 hours later, trying to throw up and hurting like I had never hurt in my life.
There was a tube down my throat, a poop bag on my side, another tube coming out the left side to collect fluids and of course the pee bag.
Not to mention the Morphine IV drip that they had on me that monitored my pain and administered medication every time I needed it. I remember seeing family around me looking at me as if they thought I was going to die any minute.
Later I learned from my sister that they did not believe I would make it.
I was in the hospital for quite awhile I would have to look back on records to find out how long, but eventually I was well enough to go home to my sisters.
Even though this was a great Hospital with a Wonderful Surgeon that I would recommend to anyone, it fell through the cracks to explain a new way of eating life style that I needed to make the changes of. So when I ate, I went back to the same old things. Of course having to learn to eat all over again, I could only eat one teaspoon or so at a time.
But needless to say I did end up having bowel obstructions that sent me back to the hospital.
After I figured out on my own that I needed to stay on soft foods until I was able to get well enough to be able to eat somewhat normal, then I began to heal.
I detested that awful poop bag on my side and even though I was extremely clean I felt dirty
all of the time. It repulsed me to look at it, made me go through an extreme depression and more. So with the time line the Doctor had given me about being able to possibly have it taken off in three months that made me determined like never before!
I started out building my strength by walking from the couch to the door and back, then from the couch to the car outside and back, then from the couch down the driveway and back, within my 3 month visit, I was walking over 3 miles a day.
When I went to my 3 month determination visit, the doctor (whom even though he was married I had an extreme crush on, after all he had saved my life LOL), he stated that he had never seen anyone heal so quickly. I was ready to be booked into the hospital right away to have the awful unsightly thing taken off.
When I describe the colostomy bag this way it is because that is the way I saw it on me, these were my feelings about myself. Today I see that I had a problem with vanity at that time so please understand it is not offend anyone that may or may not have a colostomy bag.
They were able to do what is called the take down with no problems then I was sent home within three days to recover again.
It did not take long to recover from this procedure it was a breeze.
One huge Blessing besides the fact that my life was saved, was that the State of Missouri ended up picking up an almost $100,000 hospital bill but the Doctor's bill was not covered.
I talked to Dr. Arends about making payments and truly wanted to pay him but due to the fact that I was unable to work for a long time I was not able to make many payments, so he ended up just writing it off without ruining my credit over it.
Now 13 years later, I have had many struggles. I have to have that horrible Colon test with the big long snake every year or so but guess what? THEY OUT PEOPLE OUT FOR IT NOW!
Imagine that! So I feel NOTHING!
First of all my thyroid shut down, I had to have my gall bladder removed and have had several problems with kidney stones. I started having hives and shingles right after the colon surgery so within a year or so they started testing me for food allergies and since I found out that I have over 90 some allergies to foods, drugs, household, and environmental. They call it Anaphylaxis.
As well I have asked the allergy doctor if it could have been a possibility that I was allergic all of my life to these things and since I continued to eat them anyway that it diseased my insides and he said yes that is a possibility especially since now my bladder has become diseased with the same sort of disease called Interstitial Cystitis.
This condition is definitely caused from allergies.
So my advice to mother's to be and so forth, if your child shows any signs of intestinal issues, have them tested early on for allergies because they may end up like I did.
My success story is that I am alive, I do most things that others do except I do not work full-time because I am still a slave to the bathroom and I dehydrate very easily. But other than that, I am tired a lot because I need to find some sort of vitamin's that will stay in my system,also I have immune system problems that is affecting skin discoloration. Other than that to look at me I look a picture of health.
So do not think it is the end of the world if you are diagnosed with this, now they have medications other than steroids that can help, plus changing your diet and investigating more natural ways can also help I hear. It is NOT the end of the world and if I can make it and live to tell about it you can too! Today I have changed my diet and it is slowing down the process of the bladder issue. I have learned what to eat and what not to eat, what will probably happen to a person that has their colon removed and much, much more knowledge that I am willing to share with the world. Even though I have a few extra things to deal with, I have heard of worse and know that my Story is a Success.
ginajones777 ginajones777 41-45 20 Responses Jul 25, 2008

Your Response

Cancel

I have an 18 year old daughter who has struggle with not being able to go for 2 years now. Its very stressful and we have done test after test. She also has said I will turn to an eating disorder which is sad because it runs in our family. We just found out that her colon doesn't work and she wants surgery but the doctor wants us to get a second opinion. Its so stressful on the entire family. This is major surgery for a 18 year old. I am looking into other options but she is done and wants it out. I worry about her future and if she ever has any other issues with her colon what would happen then. Its a big decision to make and one I am not taking lightly.

This is exactly how I felt ... like a death sentence was giving to me only 3 weeks ago .. im at a loss n my gi dr doesn't really seem to care so I am suffering miserably until my appt which is july 5 .. my primary dr is worried but just my luck he just retired friday... idk what to do at all but ur story made me feel like I have hope at least .. its been 2 months ive been dealing w this and I have pretty much givin up as of this week .. its very frustrating

Wow you have been through hell and back I hope your doing better now my heart gos out too you,

I had colorectal surgery about a month ago, I keep feeling like I am losing my mind. I actually feel like there is plastic up inside my rectum does anyone out there know if this is normal after this kind of surgery I am scared to be alone how do you know what is really real and what is not?

What an experience you have been through. Thank you for sharing. I don't have the problems you have ... just an irritable bowel that reacts to dairy-type items or too much fiber, easy stuff in comparison. You and the other responses are a good reminder that whatever your problem(s) in life, someone else has it a LOT worse so be content to deal with your 'portion' in lieu of whining about it.

Hi everybody! Im so glad I came acroos this blog!! I sit here and read this with tears and laughter because I dont feel alone anymore!! I was diagnosed with colon cancer last year at 38 and then a few months ago diagnosed with Lynch Syndrome which predisposes me to get cancer back. On 8/28/12 im going in for elective total colon removal and total hysterectomy. Im scared to death and feel panicked when I think about it. I was told they are going to connect my small intestine to my rectum and no bag will be needed but we will see. Im scared of another surgery, the possible complications and living at 39 with constant diarrhea or bag. Im not vain in anyway, honestly who wants either of them? My life or a bag/diarrhea, I would choose a bag/diarrhea! Thanks for listening and hope all of you are doing well!! Please say a prayer for me and I will add you all in mine!

Thank you for sharing your story. I had a complete removal and my colon/rectum in May 2011. I did okay except that I hated the bag and the bag hated me. I had my takedown sugery in July 2011 and that was when my problems started. I was so sick and constantly having to get fluids and staying dehydrated and going to er's that I was in a state of depression before I knew it. I ended up with a horrible abcess due to a fistula and had to be lanced opened and stayed that way for weeks. Well, I didn't get any better, I ended up with a full blown obstruction and was transported by ambulance 100 miles to my hospital where my surgery had taken place. After a couple of days of getting all the (backup) out of me I went through a re-takedown ( that was Oct.2011).I did okay after that surgery. By this time I had lost 72lbs. I have gained some weight back but I can't keep it up because I still have occasional obstructions. I am on the good side of one right now. I am still learning what I can and cannot eat and it seems like the list of cannots is getting longer. This is my first time to read any posts and I am so glad I read yours. I am having skin issues and other things that are minor compared to yours and I wish you God's blessings. I have been working again for 3 months and have already had to be out for 5 days. I am hoping for strength and healing to all of us who have gone thru this. Take care

You are all so courageous....i am inspired by you GINA ......i think it was very wise for you to move to california where u have access to high quality medical care...you havent posted in a while....you should continue posting to keep everyonw updated.....i hope that everything gets better for you!

I've enjoyed reading all these post and all about Gina's life story! I was amazed that Gina's story is very much like mine! I feel at times, am I by myself going through all this? It's so nice to hear other people's similiar stories to help encourage me. I had UC for 8 yrs, and IBS yrs before that and it eventually turned into UC. With many yrs of oral drugs and Remicade iv therapy, I was told It had spread to the sigmoid colon, and I really needed to get my Colon removed! I was very nervous about such a life changing experience, but with being a wife, and mother of 2 small children, I knew I had to do what was best! So I had a total colectomy almost 2 yrs ago, and done well for the most part, but I had an incisional hernia back in June that had to be repaired with a mesh put over my entire abdomen, and recovered from that as well, and then started having extreme upper belly pain, that Dr.s mistakened for ulcers...Did Ct scans, and ultrasounds and found nothing! Well Christmas night of this yr, I had become anemic after the colectomy and have to take iron supplements, but had not been taking them right, bc it seemed to make my stomach pain worse! So Christmas night, feeling really yuck, nauseated, belching constantly, stomach pain, diarrhea, and very weak, I decided to take a Woman's one a day vitamin, well, I started going to the bathroom every 5 min for the next 23 hrs!! To finally my husband had to pick me up put me in car and head to ER! I was so crippled and could not walk bc I was sooo dehydrated!!! I have horrible veins anyway, and had to be stuck 10 times til finally they used an infant needle to get bags of fluid in me! Well, they started running more tests, and decided to do a Hydo Scan to check functioning of gallbladder, well, guess what! That's what it is! The gallbladder is only functioning 7%! So the Woman's one a Day vitamin I took to help give me some strength, I thought was the one thing I shouldn't have taken, but I know now it was good that I did, so they would get to the source of the problem! My gallbladder could not properly digest the vitamin, so I started diarrhea for 23 hrs, and believe me! After getting your colon removed, I have everything to stop you from going, and between lomotil, immodium, and Paragoric, nothing stopped me!! So they had to give me to Morphine injections in ER to stop me, now I've been dealing with extreme stomach pain, tightness, and bloating and go to the Dr tomorrow for pre-op to get ready to remove my gallbladder next week!! I'm so ready to feel better, that I'm ok for them to remove it, but now I'm like Oh my! I now will have 2 organs removed from my body! I really want some feedback of how it will be living life without a colon or gallbladder!!! I just know at this point I'm ready to feel better!! I keep asking, when am I gonna feel young, energetic, and can be the busy mom of a 9 and 5 yr old, and wife that I truly want to be! Only people that have been thru all these GI problems would be able to really empathsize with me! Just wanted some feedback of what to expect after my gallbladder is removed next week as well? Thanks so much for reading my story! This is the story shorthanded as much as possible, but I was just thinking maybe I need to write a book about my Gi Problems as wEll! Sounds like Gina and I's stories are very similiar!!

OMG you have been through some of the same things! Wow! What you will experience without a colon is a ton LESS pain but alot of bowel movements. Without a gallbladder, watch your fat intake. Try to get on a good Probiotic right away after colon removal because I go to the Mayo Clinic and that is what they want me on for controlling pouchitits (which is UC in the pouch after 18 years of having it). So after so long if you do not take a probitoc or eat yogart and stay on a diet that eliminates things that are hard to digest like popcorn and lettuce you will get pouchitis. So you have a fighting chance to make sure that you NEVER get it by doing what they are telling me to do now.
My sister had the same surgery but she refuses to stay on a strict diet or do anything I suggest so she is suffering horribly. I am getting better. If you have any more questions just email me! Blessings!

I know it is sad and tragic, but Ginas' Blog is written so adorably, at places I actually laughed til I almost cried! What a writer you are dear Gina!! I cant wait to read more from your hands!! Do you still not have a colon?

No Sandra I do not that is why the Title of this Blog is Gina's Story of Total COLON REMOVAL. LOL You are so funny! I am happy that my writing brings you joy. It would have been great to have finished school past the 9 th grade maybe I could eliminate the type errors then. LOL Actually I need a Co-Writer/Editor. Maybe that would be something you would be interested in. I want to write a new book soon. :)

I had my colon removed but I wasn't diagnois with any disease. They said it was unknown and rare for this to happen. Had 2 feet taken out last year and the entire colon taken out July 12, 2011 and stayed in the hospital till Aug 1, 2011 due to complications. So I am searching for others who have had this problem.

OMG you have been through it! Please join my blog and share!
http://rmjones777.wordpress.com/
maybe we can help each other stay positive. I know it is hard to think about God sometimes when we go through these things which we have no answers for but I want you to know that He Loves you and you already have HIS STRENGTH working through you to have been through what you have been through. God Bless You for sharing. It makes me count my Blessings because my struggle is NOTHING compared to yours! :)
Also friend me on Facebook my email is ginamaejones@gmail.com God Bless

Hi, Gina. I have had celiac disease apparently since I was born, but just diagosed 8 years ago. It isn't ulcerative colitis, but it will hamper your life and greatly damage intestines over time. It took ages to diagnose, and the following year brought interstitial cystitis, thyroiditis, and non-benign Tarlov Cysts in the base of my spine. I think that those of us with these types of auto-immune diseases suffer greatly until we find a doctor with whom we can partner to manage our diseases and our lives. I do know that most studies now agree that they are partially hereditary, but absolutely related to stress. I had a very stressful early life as you did, and a very stressful career. Some of us are less able to handle that stress without it affecting us physically. And I so relate to your issues with the docs at the hospital. After being told I was crazy, I finally found a neurosurgeon who understood that Tarlov cysts can cause a multitude of bowel, anal , vaginal and bladder issues due to spasm, and although treatment is extreme and can leave a person incontinent or partially paralyzed, it was at least a relief to know the cause of my terrible pain. I am in semi-remission from the interstial cystitis because again a compassionate urologist tried everything until we hit on an antibiotic to alleviate the symptoms. I am a month post-op from a colon resection due to diverticulitis, with huge issues with diarhea and anal spasms partially due to the surgery, which caused problems with nerves and therefore the Tarlov Cyst.My surgeon had no idea what to do, and treated it casually while I lay in bed wondering if I would ever have a normal life again. I mean, this is so painful that it's almost impossible to wipe from the mind for any period of time in order to get on with life, even with loads of painkillers. But again, I found an internist with compassion who is working with me to alleviate the symptoms while i heal and then look for a long-term solution to the pain and rectal/anal stricture issue. I know i am lucky with many things. I have a husband who cares for me, I can work from home. I am sad that because of my medical issues I had to move my Mom with advanced Alzheimers into nursing care, but at least I can afford that care - barely! And I still have private insurance, but it has doubled in the last several years and is now almost as much as my monthly mortgage! But I guess what I am trying to say is that we are only as healthy as our caregivers will help us to be. Unfortunately we all now have to get involved and find curious doctors. Email them comments from online forums, the IC website, anything you can find that might be related to the causes for, or treatment of, your diseases. A medical student who is a friend said that medicine has changed. It is now an industry, with little time for personal attention, and doctors tell you nothing about what to expect or what your future might hold. I am 60, I am tired, but I want to be an advocate for those of you who haven't experienced personalized medicine and urge everyone who reads this to become educated about your conditions, do not take what the doctors say as gospel, read up on any procedure they might recommend, find out about the new alternatives. Some doctors will do a surgery because that is their profession, others are just too lazy to investigate what may be pioneering, less invasive treatments. And absolutely google every single medication you are prescribed, especially the long-term side effects and decide if you can live with it. If not, have your doctor find something else. My sister-in-law had an experimental heart procedure, which was not actually indicated for her condition. They were just trying to get enough people together for the study. It was incorrectly conducted, left her with a paralyzed diaphragm and she suffers from COPD! Her life will never be the same. She did it because the doctor said it would be the best thing. If she had researched it, she would have known that it was not, and would have saved herself three months in intensive care and two more months in rehabilitation, and now connected to oxygen for life. I feel so much for everyone who has posted on this site, all of us who have chronic conditions that we have to deal with every day. I applaud us all for living each day, and find solace in the fact that we are not alone.

P.S. I'm sorry Gina you lovely woman for all your pain I was merely incited by this growing disaster and disgrace here in United States. My heart bleeds for you, me, and Americans in general and this suffering is all so CRUEL AND UN Neccessary!!! Please keep us updated on how you are and your fight, you DO MATTER and I hear YOUR cries!!! Huge hugs-

I understand what you are going through BIG TIME. I had to take laxatives from the time I was 12 all the way until I had my colon removed. But PLEASE do not give up the fight. I have been through MUCH MUCH more since I first started commenting on her. I am at the Mayo Clinic now and have been through literally 20 surgical procedures and tests in the past 2 years! I did not think I could handle anything like this but God has given me the strength. I guess that is why The Bible says When you are weak I am strong.Your life is worth so much! You still have a Destiny on this earth! Have you tried getting on the state care or disability? I had to get on disability and state care. It took me at least 6 months to get disability. I would try both those avenues if possible. I am allowed to work part time but since I am in so much pain that I can not do much of it. I have started a couple services from home for when I do work. I have started a daily Infirmity Journal if you want to become a part of it. Maybe in some way we can encourage each other.If it makes you feel any better even though I am now going to the best Drs in the world, they still have not wound the ROOT cause of all of the Immune Dieases. But I am counting my blessings just to have the insurance I do and the care. But I do get frustrated sometimes. I am a singer songwriter and I can hardly even stand up on the platform and sing or sit up and write a song! But I always say that I would rather be like this and live to encourage someone else that is going through simular things than to die and be of no good on the earth. I know it is hard to go through these type of dieases but I am going to be praying for you that you can get health care and help! Please stay positive and do not think about assisted suicide. I have even thought about it at one time so believe me I know how you feel. But I am a believer and I know God is on my side and if HE be fore me WHO can be against me. Even if when I feel horrible I can type on the computer to you and let you know that God Loves You and it is NO accident that you happened upon my posts but divine intervention. Because I will pray and believe that you WILL be taken care of. Please stay in touch. I am not one of those Christian fruit cakes LOL. I am a compassionite hearted woman who is going through a lot and knows that in everything I go through it is a test to see what I will say or do about it. I say many negative things but I always pick myself up and look at it in a positive light.

http://rmjones777.wordpress.com/
This is my Blog please join!

Isn't it amazing that assisted suicide for the chronically ill in severe pain with no healthcare is ILLEGAL in America?

You would be locked up for letting dogs suffer so brutally here but we treat our human lives here in U.S. like crap.

I too suffer debilitating health problems and now my G.I. tract is severely ruined after a supposed routine hysterectomy. At the time I HAD GOOD Insurance and supposedly best Baltimore doc.

Hmmm How funny that he screwed up my colon in the process. Now I have no insurance and so constipated that even taking cocktails of laxatives I sometimes can't go to bathroom for up to FOUR WEEKS! I guess its humane to deny me care or let me be euthanized as I'm denied care. I'm unable to work much now compounding the issue and too sick to maintain relationships so on my own in this world.

I have great quality of life because Health Care is a Privlige not a Right in America, right?. BULLSHIT!!!

Get with the program America or is it cruel population control?

South America is kinder, they take the majority of poor children to fields and dig mass graves after promising them food and at least shoot them before they are sick(er) or starve to death. Am I ANGRY??? YES I AM!!!

And until last year I was upper middle class and ALWAYS bought private insurance so don't dismiss people so casually. I don't care if you are red, purple, brown, white, yellow, rich, poor, skinny, or fat, gay, straight,stupid, or smart, IT IS INHUMANE TO DENY PEOPLE HEALTH CARE and Treatment!

GET ANGRIER AMERICA!!!

Final Update: I am losing my skin pigment at an alarming rate, but the Derm. Dr at Mayo is re-pigmenting me with a UVB light. He says it should take a year or so. Then I have to buy one of the lights and do it forever on my own. Also I went to Mayo and they worked me up one side and down the other only to tell me I had Fibromayliga and the obvious PTSS. So they have basically told me so far that the Colitis, The Uclerating of the Bladder, The losing of All Female organs due to endometriois, The Thyroid Issues, The Muscle and Artiritis in my joints, The MULTIPLE allergies, The Losing of my Gall Bladder, Cluster Headaches, The Vertigo and more is ALL IN MY HEAD!

LOL!!!!!! Same ole thing! I am so sick of it, I guess I had better get ready to be sick all of my life because these drs. are not able to find out what is aling me at all.... It is so sad. So far all drs. have told me that these are all isolated instances, but now I am being told it is because of the Post Traumatic Issues. When it is CLEAR that most everything that is harming my body are ALL immune related illnesses. How could there not be a ROOT illness causing all of this?? Of course my insurance DOES NOT pay for me to go to any Natrualpathic dr.. Anyway Pray that I find a Dr. that is MORE concerned about my health than his pocket book and that he will go the distance with me as a case study in finding out what is going on with me. I am still encouraged because I am alive and have recently finished a Fiction Book about a lady with a story much like mine called "Sabrina's Story". It is being published through Publish America by March. You may want to get a copy..

Thanks!

Update: I had to reschedule the Mayo Appt for Mid June please pray I make till then. We did not have the money for me to go because they do not allow me to stay in patient so we have to fly out there and have hotel money for at least a week to 10 days. We have had some hard situations with the economy and are having it rough. But I am still positive, life may hand me some lemons but I KNOW how to make some GREAT lemonade!

I am needing a Main Author with me as a Co for my book if any of you are interested let me know.

Also we have our music on the internet now for ringtones and more just type in Charlie and Gina Jones and many place come up to purchase. You can friend me on Facebook ginamaejones@yahoo.com or Gina M Jones also www.myspace.com/charlieandginajones or www.myspace.com/meandmrsjones thanks for all your encouragement.

Thank you so much for that comment. Also thank the lady before you for the information about the powder, although I have done EXTENSIVE research on Natural Powders to drink, but every one of them has something in it I am allergic to. I remember that one you mentioned and I am sure it had something in it I can't have. As well I have checked into Natural Drs. and they DO NOT take charity cases and that is what I would be since they DO NOT take Medicare. I even emailed one recently in San diego that is FAMOUS witha book and all asking them to SAVE MY LIFE a charit deed and I would be happy to be their spokes person since I am asinger songwriter, (who is now getting ready to sign with a Record Label), even told them I would pay them back when I got money. Guess what? NO RESPONCE! They all want MONEY!

To the lady with Garners Syndrome:

I am happy that you are also able to look at your experience in a positive light like me. Yes we both are alive. I have an update to share. Since I wrote this I have been on a quest from Tn to Idaho now to Calif to possibly find a doctor that would send me to the Mayo Clinic since I am now worsening. Idaho Drs. were real good in some ways for example they found right away that I had Chrons not UC (so I was mis-diagnosed from the nice Dr. who helped me in the beginning) it was back in the pouch and above the pouch. They showed me the pictures of it. So in Tennessee of the Past 15 years they have been telling me that I am fine. Even last year! They were unable to find anything at all! I went to the very Best Drs in the Nashville Area too!

In Idaho he gave me Cipro that I took for one week or so, then (this is the bad part) they wanted me to have a swallow a pill cam (after I took the cipro). I tried to tell them that there would be NO WAY I could pass the pill cam due to the narrowing in the anal area from scar tissue. The dr. said "Oh Sure you can". So I listened to him even tough I felt extremley warned inside. Of course it got logged in there and I could not go to the bathroom. I called them and they said to Wait and see if it came out within 2 days. I did not come out. I was in horrible stomach pain.So I called a surgeon that I had gone to in Idaho to have him standing by just in case.

Then I called the GI dr back. It took another day or so before the Dr. finally had me X-rayed only to come in and tell me that "Yes" it was logged in there. They scheduled me for a scope and he said that he would go ahead and stretch the anal area while I was put under.

The surgeon just showed up at the time the GI Dr was doing this, which I was grateful for!

So he went in with the GI Dr to make sure if anything went wrong he could take care of it. They put me out with 250 fentaynal, 75 benedryl 250 vercsed. I was under until he started to stretch the anal area, then I remember hearing eveything and screaming from pain.

Obviously I was experiencing for the 3rd time in my life anesia awareness.

Then I heard the Dr. say GIVE HER MORE, The anthesia person said but I gave her 250 of each and the Dr. said give her 275. Let me paint the picture for you,

I weight about 115 lbs!

But they knocked me out again and when I woke up in the recovery room it felt like my skin was on fire, then all of a sudden I was freezing then on fire again. It was horrible. The Dr. came by and I asked him SPECIFIC questions that I HEARD while I was supposedly under, like Why Did I Feel You Stretching Me? He illuded the question, I asked why is my skin on fire? He just brushed it off and said I may be having some kind of after math of the anesisa.

Then he said the good nes was that I do not have Chrons, That I Was HEALED of it. Of course I wanted to believe him so when I left there I felt so great that I was HEALED.

When he left I HEARD the nurses behind the curtain talking and they were asking each other, why did they give her so much? She is not big enough for all that. Then they said to keep a good eye on me.

After the anesia wore off and I had told everyone that the Dr. said I was healed, (LOL)

I started thinking about it and it did not take a rocket scientist to figure out that having taken the Cipro for a week before this would have made a TON of difference since that is one of the drugs they use to keep it in remission.

I started asking the Dr's nurse questions about the statement he made that " was Healed".

Asking if what he means by Healed is that it will NEVER come back? They stood by the diagnosis even though I reminded them that I had just taken Cipro beore the scope. Needless to say I gathered my records from him and never went back.

We have since moved to Calif. I have gone to the dr here and he sent me to a GI Dr. I went in ONE TIME and all he did was take me in his office and talk to me based on all that is going on with me. 5 Immune Dieases, losing my skin pigment, severe muscle pain and more, he Immediatley said I needed to go to the Mayo Clinic (I did not even mention it). So I am set to go to the one in Scottsdale AZ on Jan 6th. By the way, the spasms in the small intestine are back, so I KNOW the Dr. just said that I was Healed to get rid of me from coming back to him because he really MESSED UP giving me all those drugs for my small body.

It could have possibly killed me... Pray I get good Drs. in AZ that KNOW what they are doing! Thanks for all your comments!

thank you so much for sharing your story.........i did not have UC but Garnders Syndrome........i have a family history of colon cancer, i have had the same surgeries and although i get so aggravated sometimes because i have limits now that i never did before, i am alive!!!!!!!! had my surgeries in OCT 96, and the take down in 97......you've been through a lot and i applaud you for coming off the drugs and getting yourself healthy!!!!!!

I also was diagnosed with ulceative colitis and have recently found out that I have multiple food allergies. The naturopath gave (sold) me this powder called Endura. It's orange flavoured and very tasty. I drink one scoop in a glass of water each morning and after about two weeks I have tons of energy again. It's a real life saver. If you haven't tried it yet, you should think about it. After years and years of dealing with doctors that haven't helped me, I totally recommend finding a good naturopath.

It is worse over here now. I am on disability now but before I was accepted on that, I could not even find a doctor to take me at all if I did not pay right then and there or provide proof of insurance.

Being a doctor over here for the most part is defintley for the riches. Of course for that one exceptional Doctor that saved my life. Thanks for the reply.. I am willing to go anywhere to share my story for people that are having these problems.

As someone from Europe I find it truly shocking that in the world's most powerful and technically advanced country it is possible for someone to be denied essential live-saving medical treatment because they don't have insurance. Of the world's developed countries the United States must be almost unique in that respect.



It is fantastic that you were treated by a good hearted surgeon who was prepared to waive his fee, but it really shouldn't depend upon that. It would not be the case in a country that was truly civilised.



Anyway it's great that it worked out for you, although I'm sorry to hear about all the pain that you went through. Hopefully that's behind you now.