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Bowel Disorders board

Hello. I will be very honest with whoever is reading my reply to this post...this is my first time ever "posting on a board" or "blogging", so I hope my message is clear and "readable"! Well, here goes...I was diagnosed with Crohns at age 18, 2 days before leaving for college, so I have had Crohns now, for 16 years, this month and a colostomy bag for the last 7 years this past January. I know the following is long, but please read and I hope it helps...

I guess I will give a bit of background and then give you my take on my colostomy bag. I had been suffering for about a year with either a multitude of ulcers in my mouth and throat and fever or diahrrea and fever. About 2 weeks before going to the G.I., I started having severe chest pain, then burning in my chest and not being able to keep food down and the last straw was waking up with my elbow joints, jaw and knees being achey/locked feeling and inflamed. They first found the Crohns in my esophagus (via endoscopy), which presented as large open ulcers. They called the infectious disease team in and they thought well maybe it is Crohns, but it took a few more days of tests, the last one being a colonoscopy, to diagnose Crohns(G.I. did not want to jump to conclusions b/c he was my mothers GI and she was and still is a Crohns patient, hers is not as expansive or sever, but she is having to use Humira now). I went to the same doctor who diagnosed me for about 5 years and I was treated with prednisone (solumedrol in hosp.), asacol, pentasa, 6-mp, etc., but I became very frustrated b/c every time I was put in the hospital (which was about 3-4 times a year), the doctor would leave for vacay! I was known as the bounce back kid for awhile b/c they would start me on the IV steroids and 3 days later, I was feeling SO much better. I was fortunate to have my mom to help me deal with the Crohns, but my parents did not want me to feel different b/c of being diagnosed, so they let me leave on schedule for college (2-1/2 hrs away), only to come back home a year later. I would definitely do a lot of things different now, but hindsight is very 20/20, especially in regards to BIG decisions. I continued the lifestyle of an 18 year old and that went on until I was about 23 or 24, when I finally realized that I did not have the body of a 23 year old or at least not the digestive system.

Well, I switched dr practices and started seeing a doctor, who had 1 nurse and 1 receptionist and after 1 trip to the hospital, she kindly told me she was referring me to DUKE...The doctor had heard a G.I. at Duke give a lecture on Remicaid and she got me in to see the GI at Duke. I absolutely loved her, as did my parents and she decided to take on my case. I was the first in-patient at Duke to receive Remicaid, but at first I was still trying the Pentasa, Asacol, steroids, 6-mp and I had started 6-tg and Methatrexate, as well. The first time I received Rem., the results were good, but eventually, instead of every 8 weeks, it was 6 weeks, 4 weeks, and it started to not work so great. I developed a Rectal/Vaginal Fistula and I had to have a Seton (looks like a Red Twisty Tie) placed at the base of my vagina, to keep the fistula draining...lovely! It grew worse and in January of 2001, I had to receive a temporary illeostomy, due to feces coming out of my vagina due to the fistula. I was already in the hospital at Duke due to a flare, when this happened, so the Colo-Rectal surgeon came in my room, heard what was going on and said first thing tomorrow, you get an ostomy bag! My parents, family, friends, were 1 hr away at home and I had to call and tell my parents. They were at the hospital by maybe 4 in the am and got to see me before surgery! All of this and they could not get an IV started to save their lives, they tried any and everything. They finally were able to start a neck line (name just went out of my head) once I was out. Anyway, I woke up and there it was, just looking back at me and I was only 26 yrs. old at the time.

To be honest, it felt AWESOME to not be in constant pain, to not always be looking for a bathroom, to not be uncomfortable going to the bathroom in public places and just to be alive b/c the fistula situation with the feces was going to kill me, so the way I see it, it saved my life. It definitely took some getting used to, but pretty much all hospitals and medical equipment stores, have nurses that only deal with ostomy bags, so I was fortunate to have them. I had a few "accidents" in public in the beginning, like at a chic bar in DC and at a local watering hole (which at the time were mortifying, but with good friends and a good attitude, it worked out) as well as in the middle of the night, but that was mainly b/c I was using the wrong style of bags. I needed a convex bag, so that it would hold the Stoma in place and not let it go up and down as much. The incident at the DC night spot, had us running around the greater DC area trying to find ostomy supplies, b/c in the beginning, I did not know to always take at least 2-3 bags and supplies with me when I travel, even if just for the weekend. I now keep a little ziploc bag with a bag, paste, clamp and gauze wipes in my purse at all times. A little bag in the zipper pouch of my purse, but a lot of re-assurance that I have extra! Another trip, in England with family, I did not notice that their coffee was that much stronger than the coffee at home or maybe it was b/c I had a cold at the time, so I took some English cold medicine, but I woke up in the b and b's nice bed with white sheets that my bag had EXPLODED all over (had to explain to the front desk, thank goodness for moms that are traveling with you!!!) Also, I started using Banish drops, each time I emptied my bag, but I now use M9 drops (Hollister) to avoid the odor problem. The M9 drops are bright blue, so for the ones I keep with me in my purse, I use a little Crest bottle b/c the Crest is blue, so nobody know the difference. I do keep the bottle in a little bag b/c the blue stain does not come out so easy. It was a lot of trial and error in the beginning, like finding the exact time, when your bag is not going to start going, so you can change your bag without a huge mess. I still have occasional accidents at night b/c I will be so asleep and my bag will fill up and then leak or I will go to change it and it decides to just start going... Also, in the beginning, you have to learn what fabrics, materials, you can wear and cannot wear b/c you can see the outline of the bag. I use the one piece convex w/ the clamp that I empty. The clothes were not that big of a deal and I have people still surprised to hear that I have a colostomy bag! Oh yeah, I guess I should tell the rest of the story...

Well, I got the first ostomy bag in January of 2001 and that March, I finally received a Porta Cath b/c my veins were shot. In October of that year, they removed my colon and rectum b/c even with bypassing the colon for a while, it was still 95% diseased, as were my rectum and anus. After the surgery (at Duke), they sent me home and 5 days later, I was back at Duke via ambulance b/c I was vomitting feces, due to a kink between my incision and my stoma. I was Septic and fading fast, I had an NG tube for 3 weeks, slept on cooling sheets, received blood b/c my counts were so low, etc. I was at the hospital for 2 months and I do not remember 3 weeks of my life...SCARY. They were about to re-open and fix the kink and they just happened to do one more x-ray and it had unkinked on its own, but to this day, it will get a little kinky every now and again and with all the scar tissue and adhesions, I have had a few bad attacks over the years. The following March 2002, they removed the Anus, but there was still active Crohns at the time they removed it and to this day, that one issue has caused so many problems. The November after the surgery in 2002, they put a wound vac in my anal wound...okay, for those of you who have not had the pleasure, just imagine a brillo pad being shoved up into your bottom, which is an open wound and then being taped in and then and only then, you get plugged into a little vacuum and you have to lay on your side for 5 weeks (time varies). A home health care nurse had to come and change the sponge (nothing soft about it) and I would get a good dose of RX before the change, but once you have been on meds for so long, there is not that much that works that great. I had to give myself daily injections to prevent clotting and I did start to get sores, just from laying on my side and not being able to move b/c of the FEAR that the sponge would come unhooked or something would happen that would cause the "NURSE" to come back (actually, she was great). My mom and I would joke "no wonder my butt (used a different word :)) hurt, there was a duck in it...(the vacuum made like a quacking noise sometimes). What would we do without laughter?

Well, over the last six to seven years, I have had 30 surgeries/procedures. I have had to have a lot of EUA's to try to find where the drainage was coming from b/c I would have drainage from my vagina and I did not know why and neither did the dr's. I have suffered b/c of pretty much no immune system and so many other ailments and illnesses, I have tried to forget. I had my last surgery 21 months ago to try to fix the fistulas that remain from the "old days". The surgeon was the best of the best, who only treats patients recovering from cancer or disease that cause the need for repair surgery. He is head of gyn.onc. at UNC-CH and only sees patients as they are presented to him by another doctor. I adore him and his nurse and they did their best to help. He went in and pretty much spliced open the vagina, cut out the fistulas and one sinus cavity and removed scar tissue at the base of the vagina and left the whole area open to close back and heal on its own. I had to pack and repack the wound and yes, it was very painful, but the worse part being my coping mechanism completely failing!

I had always taken about 6 - 8 weeks to heal/recover and I was glad to say, I am good, it could always be worse, etc. I had my coping mechanism down pat and all of a sudden...The surgery was right before T'giving and after Christmas, I started feeling a lot worse and run down all the time. My personality changed and it caused me to not want to leave the house, not to talk, very lethargic, NO ENERGY and I started feeling a lot of heaviness in my chest. The chest pain started out slow and small and by the end of Feb., I could no longer deal with the pain. I went to the G.I. and they did a whole series of upper/lower tests and everything was coming back clear. It finally dawned on us (myself, live in boyfriend, drs), that is was anxiety/depression, brought about my all of the general anesthesia, pain meds and my body just being TIRED... I had never dealt with this before and it just got worse and worse, until I started seeing a physciatrist every 4-6 weeks and a therapist once a week. The dr. told me that b/c of all the med's and stress to my body, the chemicals in my brain were firing the wrong way and to the wrong places. Neither the dr. or myself wanted to just put a "band aid" on it, so therapy was not even a question! It took a while b/c I had a flare during the summer brought about by a final treatment to heal the last surgical wound and then the heat of the summer, which always makes me feel worse and I had to completely re-group. My flares now consist of skin ulcers, which show up on my legs, arms, scalp and in my mouth, as well as inflamation in my joints. I always got the skin ulcers before, but never this bad!

Well, last November a year after the surgery, I finally had a break through in therapy (only took 5 months), but you know finding the right meds for symptoms and pain, as well as coming down with every cold or illness, does not help make recovery better! Myself and my boyfriend / domestic partner had to deal with the news, that I would not be able to have children and this past b-day (34) was especially hard, rare for me b/c I love b-days and do not really care about age, but I knew 35 was the cut off for me if I were able to have children b/c of being SO very high risk, so even though I have been dealing with the news for a while, it was still sad for me. My boyfriend and I have the same b-day, so we go away for our b-days, which helped, but you still think...what if? I have learned to say...This sucks, I feel bad, not fair, and not immediately follow it up with guilty feelings, even though I do know and do believe that it could be worse. I am fortunate to have a great family, support system and the love of a great man and a beautiful 70 lb 4-legged baby, my boxer Tori. I also will continue with therapy b/c 5 years from now, I do not want to wake up dealing with the same feelings about my health and/or children. I want to learn to deal in a healthy and healing way.

I am just now getting over an infection that settled in my lymph nodes and sinuses and the anti-biotic wrecked my system, so that has me aggrevated, but as far as my feelings on my "bag" are concerned...I have learned over 7 years, how to see it as a good thing. Please don't get me wrong, I have about 4 pity parties a year in regards to the bag, but I am told I am fine the way I am and lets go, so I do. I wear a tankini to the beach or pool with the swim skirt that is popular now and nobody can tell. I have come up with my own treatments for skin irritation and ways to cope or deal with the colostomy bag (even in regards to lingerie, intimacy, everyday life, etc) and I would be sincerely glad to share with whoever is interested. (Contact me here on this Board)
I have worked with younger patients in the past, especially females headed off on their own, who are just being diagnosed or just having the surgery. I am sorry about the long post, but I feel like to understand a persons thoughts, you have to know where they have been. Thank you. :)

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