Struggling with Ostomy: Need Help and Advice!

Hi Fellow Ostomates!

New to this site and never was ever on another.

My story:

I was diagnosed with Diverticulitis in January 29, 2011 in the ER, I was admitted and heard the dreadful news in which I thought I just had a stomach infection. I was living in Florida on the beach and loved my job was very active in swimming and tanning and long walks on the beach every chance I got. That's when my NIGHTMARE began! I didn't even know what the word meant about this dreadful disease until a loving and caring Colon and Rectal Surgeon explained it all. From then on I continued with infections and hospitilization in which I had to be dying first before I admintted myself again and always leaving the hospital early against my Surgeon's wishes. My weight plumetted from 120 to 89 lbs. being on a strict diet of liquids, baby food and graduated to mashed potatoes, had Cat Scans and Colonoscopies galor, about 200 plus when not infected due to perferation of the colon if I was infected. Finally in August my Surgeon scheduled a resection for July 29, 2011 exactly 7 months later. I took my vacation from work 2 months and my son flew down to see me (daughter lives in Fl). I still to this day don't know how I then was back on liquids and beached everyday with my son, fished, and enjoyed my vacation with him and we were very active everyday but it really sucked when I had to make him dinner or go out with him and not eat at all something I love to do very much. I looked like a skeleton but a very tan one :) I tried putting a meal in the blender once and it sucked and threw it up so that was it for me. My Surgeon scared the hell out of me saying if I eat my colon could perforate and be in serious trouble. I just couldn't wait to get this "Monstor" out of me! I thought after the surgery I was cured only to wake up 4 weeks later with 105 fever and extreme pain in my right side and I knew this was completely different so back to the hospital again and now diagnosed with Colitis! Now with both diseases I continued to have flare ups and was hospitilized about every other month! I felt my life was over being constantly sick all the time! In the meantime my daughter became pregnant with my first grandaughter so I tried to spend as much time with her and my son in law as possible and was there for the birth. I was so happy but soo sick of my life! I was missing out on so much by working all the time now taking on a second job because I was becoming broke due to all the time I had to take off of work but every chance I got I spent with my children and grandaughter. I did finally in October meet the man of my dreams and was there for me every step of the way then asked me to move in with him and I did. Life was then looking up for me and he has a heart of gold and told me to quit my jobs so that I could spend quality time with him and my children so I did. So now having free time on my hand I started you tubing on Colostomies every day and read inspirational stories on how people got their life back never being sick again. My Surgeon was totally against this and thought I was crazy and wanted me to see a physciatrist but I didn't. She told me "this was not for me!" SHE WAS SOO RIGHT! She knew my heart, soul and body very well and we had an extremely close relationship. I hit rock botttom on my grandaughter's 3rd birthday in April 2014 while at her party with a ton of people I had to go to the bathroom and felt the "Monster" acting up again. My grandaughter came in with me to use the same bathroom as well and as smart as she is she new I was getting sick again! I was so depressed at the time because I had lost 7 immediate family members within a year and unable to attend any funerals due to being sick or in the hospital; the day of my grandaughter's party was my sisters funeral who lived in NJ and died on her birthday of skin cancer at 40 in which she battled for 18 years! I had to say Goodbye to her on a ventolater over the phone days before. I felt death all around me and I thought in my heart I would be next! I was back in the hospital the next day with both disease flare ups and extremely sick but I still checked myself out early. That is when I decided to have a Colostomy even against my Surgeon's wishes (she wanted to perform another resection) I was adament about this surgery and having the whole entire "MONSTER REMOVED AND GONE"! So that being said it was scheduled for June 20, 2014. Prior to that on my 50th birthday instead of celebrating I was being slashed open for a lump on chest to test for Melanoma ( I felt my sister telling me to go) but luckily it was basil cell and my stitches were left in until the day of my surgery. On June 19th I knew it was my last fast and the purple shit in a bottle would be gone forever! Upon arriving at the hospital on 6/20 my Surgeon came out to meet me at 5 am. and told me she was way behind in schedule; I was to be the first to be operated on and I couldn't understand why she was saying this and told me to go home and reschedule for the next day or it would not happen until that evening. I was dumb founded and knew it was her way of saying she didn't want to perform this robotic surgery on me. She always operated on her worst patient first in which this was always me! I told her I want it done today and I didn't care about the time so I waited and waited until finally they took me in at 4pm. and by 11pm. my Coco was born; I named her prior to surgery. I was supposed to be in the hospital for 7-10 days but checked myself out even with 2 major blood transfusions 2 1/2 days later only to comply with home health. I had a complete colostomy with only 2 inches of my bowel left so it is an ileostomy as well. My Nightmare began the following day at home alone and in pain with a huge hernia I decided to take a shower before the nurse got there and I managed to do so and rinsed out my pouch in the shower, put makeup on and got dressed by myself but then fell on the floor and busted my stiches and sutures around my stoma. I pulled myself up with my walker and got back into bed. When the nurse came I got scolded and she contacted my Surgeon and told her what had happened; I wasn't supposed to shower for about 10 days but never listened to anyone. My Surgeon told her this was me and I always did what I wanted and that was no surprise to her! Since everything was wet and bloody my nurse had to remove my pouch and my gauze sites on my stomach and my shield of armor that covered my whole entire chest and stomach. The days that followed and continued on I was busting 2-5 times per day and shitting up everything in the bedroom and bathroom I couldn't control my ostomy and neither could my nurses trying different pouch systems and nothing was working! I didn't like any of them! My head ostomy nurse of 35 years even duct taped my pouch around my whole abdomen yes duct tape I looked like a package and was extremely in pain and uncomfortable. I thought to myself this is it I had enough and they are not helping me so I fired them all! I started researching different pouches and ordered and sampled on my own. I was told to wear the barrier ring, 4x4 sheet that I had to cut, my pouch, my belt and sleep on plastic and wear saran wrap around me! I was devistated and once again felt my life was over and I should have listened to my Dr. I even missed my first post op appt. because I just busted prior to leaving the house. This continued on and on and in August I told my Surgeon I wanted it reversed and she said she knew it! She scheduled the reversal but with me not eating too afraid she cancelled it and told me to get stronger and gain weight. To make a long story short which I know my story isn't short :) my reversal was cancelled 13 times in 2 years always something wrong and finally was scheduled again a few months later but she told me to really think this one out that this Surgery would consist of her using her hands not robotic due to my size and then telling me I would need rehab for about 2 months and then home health and possibly diarrehea for about 6 months with only 2 inches of my bowel left. I am also extremely anemic so she stated even with my hemotologist there if my bleeding was uncontrolled she would stop the surgery and I could wake up with another stoma! That is if Coco was put back already. I didn't care but was worried about the bleeding and long recovery but it was better than shitting all over the place even in public busting! A few days prior to reversal my Grandmother was sick ( the only family I had left besides my children) and asked that I come get her in Pa. She knew about my surgery and wanted to come live with us for a while in Fl. but she didn't quite understand the outcome and that I could not care for her so she said she would get home health and be with us so I agreed. I booked my flight and was still on schedule. Then 2 days before my reversal my Surgeon's secretary called me and stated my PCD did not due my bloodwork or ekg nor chest xray and I said what now???? I had just seen him 3 days ago more negligence! The only option I had was to find a place asap to do these tests and I would be on. So I did and called my pcp for a fax and his secretary stated that my surgeon needed to do this they went back and forth arguing about my situation because this could of been done in his office! Finally my surgery was postponed for one week due to fault of my pcp and I was pissed! I was now thinking it is not meant to be and that Coco will be with me for life! In my heart my grandmother was more important to me and my cancellations have been going on now forever it seemed sooooo I decided to keep her that God was telling me something and I should not do this! So here I am today still seeking help asking questions but still having problems not with busting but it is hard when the stool is thick and then urine like then chunks coming into my pouch. By the way I did have a blockage last September and was literally pulling stool from my tiny stoma and massive bleeding in my pouch so had to be hospitalized for irriagation and then changed pouch systems again and again! My boyfriend moved to New York a year ago in May to help his Mom and Dad who are up there in age in his hometown he grew up in. I did not go because my daughter and grandaughter was in Fl and son in Pa who flew down frequently. He had his whole family here mine was not and I had a hard time with this but finally I decided to make a fresh start and move here with him; that was 2 months ago. Me ex husband lives in Pa. so my daughter, son in law and grandaughter visit up here a few times a year to see her Dad. I sold everything except personal items and clothes and left, my daughter understood but my grandaughter took it really hard. I miss my children sooo much and feel lost here without them. My boyfriend works so I am "Home alone lost in New York"! I am really glad to get out of the intense heat of Fl as I have not swam since my colostomy something I miss so much. I also put on 20 lbs. with my boyfriend spoiling me with eating out and great home dinners so I am having another huge problem with self image, can't apply my pouch without a mirror and pooping in the shower. I change my pouch everyday so my skin stays clean; had topical dermititis in the past as well. I have become a social outcast and don't want to leave the house. In my non ostomy friendly bathroom now I am experiencing extreme difficulty without any counter space and look like I am 5 months pregnant! I am depressed and need any help you have out there! I have major anxiety with the shower and on medication and vitamins so I feel like I constantly round the clock 24/7 have an infant to take care of. I am obsessed with Coco in keeping her clean and even flush her with bottled water every day. I really need "my life back again"! I miss my Surgeon soo much she still does not know I have moved here permanetely that call will be hard to make as I am her oldest patient! I did go to a wocnp here just because I felt Coco is not the same and she stated she is beautiful little thing as I have heard in the past so many times but to me she is a royal pain in my ass and am tired of it all! I keep stopping her and starting her all day long and looking at her with my now transparent pouch that I have had for almost a year so I can see what she is doing! My clothes do not fit anymore so I stay around the house in a tank top but covers her. I REALLY WANT TO BE RESILIANT AND GO ON WITH MY LIFE AND NOT HAVE TO WORRY OR OBCESS OVER A STOMA AND AM SOOO TIRED OF READING SUCCESS STORIES IN WHICH I WANT TO BE ONE!

THANK YOU FOR ALL WHO HAS READ MY STORY AND YES I HAVE BEEN OR I FEEL THRU IT ALL EVEN THOUGH IT'S ONLY BEEN 3 YEARS SOOO "LET'S TALK"

Hi Cocoa, it sounds like you've had a very difficult time, between surgery, health, and family issues. Everyone has a "story", some more complicated than others, but I had a really difficult time trying to figure out what your "ostomy" issue was. Still not clear if you have a colostomy or an ileostomy. If the opening is made into the colon, it's a colostomy. If it's into the smaller intestine, then it's an ileostomy. Sometimes the surgeon has to make the opening into the top part of the large intestine/colon, and then you might have a continuously acting colostomy that behaves much like an ileostomy. With that...you may not be able to irrigate, and output is ongoing and variable...formed, thick, or loose and watery.

You also are using terms I'm not familiar with... (like busted). Do you mean the bag busted, or the seal?

If your ostomy is working well, then it doesn't need all the attention you're giving it. I never use a see-through pouch. If it (the stoma) doesn't bother me, I don't bother it. My flange used to stay on 7+ days, but my aging stoma shrinks back into my skin and has been causing leaks (which I never used to get), so I try to change before I need to, 4-5 days. If the seal is good around the stoma, then there is no need to remove the flange, to wash or air out the stoma or the skin. I needed a mirror when I was pregnant (to see my stoma) and I probably need one again because I gained so much weight. But if I am going to change when I shower, I have no problem with an active stoma... as all the poop gets washed down the drain. I try to change before I eat when there's less activity. I'm not an expert on how to end an obsession (with the stoma activity), but I would imagine if you take one anxiety at a time, you will free yourself of the obsessive thought. Since I started having these leaks, I now sleep on a pad to protect my mattress. I sleep on my back, so I don't worry about the clothes and linens... as everything is washable. I spent 4 years as a kid with ulcerative colitis and am forever grateful for my ileostomy, which is like a badge of survival. It gave me back a "normal" life. Learning to manage the "ostomy" is like toilet training... preparation, plans, supplies, organization, etc...

Best of luck to you. Stay well. Marsha

Coco, I’m sorry for your situation but I think you’re on your way to where you want to be. When folks write of their successes they’re expressing their feelings. Expectations might vary and evaluations along with them. One might ask, “How can you put up with that?” of a person who’s perfectly content with their “success” as an ostomate and survivor of some worse stuff. A colostomy was NOT an option for me until I realized the alternative was death. We go through a lot of crap, physical and emotional, after our gut jobs but we can find a sense of accomplishment as we improvise, physically and emotionally and bask in our successes. You present as a wise, experienced Lady who’s on her way to accomplishing lots of good stuff for herself and those who love her.
Looking forward to reading your successes.
Respectfully,
Mike

Hi Coco,

I have a ileostomy and Crohn's. I don't know who your medical provider is, but I would be dead if not for the Mayo Clinic. My local medical providers have tried to kill me many times with their incompetence and limited knowledge. There are Mayo Clinic locations in Rochester, MN, Jacksonville, FL, and Scottsdale, AZ. They will treat all of you, not just part of you. Go to Mayo, they will give you a quality of life you deserve. Good luck.

Dennis

I am not at all sure that a reversal is the answer. It left me spending a lot of time in the bathroom or cleaning up messes because I didn't make it to the bathroom.

The best thing I did was to get a gastroenterologist. He had me counting how many times I changed the bag, how many times it exploded or ripped off (a major problem), etc. Now I use a generic Miralax to avoid blockages, and I've got changing and/or cleaning the bag down to a system. It has taken six months post-op but I can live with this as long as I have my crew of supportive husband and friends.

Mary

Hi Immarsh,

Thank you so much for responding to me quickly. I was really hoping you would be the first with all your experience, and you were! I don't have any colon, so I have an ileostomy with only 2 inches of my bowel left. As far as the "busting" word, I was busting from around my stoma all over my stomach constantly. I feel now I was wearing too much on and around my stoma. I have to change her every day due to the fact she is smaller than 5/8 in diameter, and my pouches are pre-cut to fit, thus starting at that size so stool forms around her in which constant skin irritations occur. I use a small soft convex, not needed as stated by doctors and WOCN, so now I just contacted my supplier for a sample of non-convex due to stool just laying in that small convex cup and not moving down into the pouch if thick. So, I have to literally push it down with 2 fingers, especially at night, or it will spread over onto my stomach and go out the side of my half belly bottom shown. I just put a sticker on my seen belly button at night and leave the sticker on the gas flange so she does "balloon" and not "pancake" or "vacuum effect occurs during the day; I take it off when I go to bed, thus leaving it flat. I would much rather "balloon" during the day than having poop lay in and around her. My diet sucks because I miss eating so much. Take, for instance, yesterday I made a nutritious soft meal in my slow cooker of chicken, stock, small potatoes, carrots, and peas (no corn), so I was in the bathroom all night and still popping out big chunks of my dinner, in which I spent most of today so far in the bathroom! I can't take it! As far as the transparent pouch goes, I am afraid not to see her because of the blockage I had last September. I feel I need to see what is going on with her. I know it sounds crazy, and she does stick out 1/2 from my stomach and tiny, but she is extremely sore right now! I can eat 5 pieces of pizza (no crust if greasy) in one sitting. No one can believe I do this, and then right away the oil will move quickly into my pouch, weighing to me about 5 lbs. that I have to hold up my pouch, then empty. Then the cheese and crust will just linger on, and I will see it for 1-2 days. It's as if she is hoarding food in there that's making me gain weight. The WOC nurse here told me to eat what I want to but in moderation. So, not being a breakfast person besides coffee, I tend to eat a large lunch then light dinner or vice versa. If I really feel an impaction going on, I will drink vinegar or olive oil and do take 3 colaces per day. I feel and know I constantly stop and start her with 2 controlled substances and after my shower, vitamins, fish oil, colace, etc. etc. I have tried the marshmallow trick before my shower, and she then looks like a little marble with blood flow and iron supplement in the morning because I don't want to be in the shower pooping out the night's before dinner and being stuck in there holding my gut in until I can get to my mirror to apply my pouch system. She does not like water at all, so when she does start in the shower, I push on my abdomen to get it all out! A royal pain in my ass! Seeing food that does not even go down the drain, my shower feels forever, which makes my anxiety worse! I am a very clean person with my body and home but feel disgusting when this happens! I can't imagine even leaving the house today because of last night's damn meal! My stomach is cramping hard, rinsed her with bottle water, and lubricated her continuously today!!! Help :(

Hi Mike,

Thanks so much for making me feel better, but I really hope I can be a "success story" soon one day after 3 years of this physical and emotional pain!

Sincerely, Coco620

Hi Dennis.

Thank you so much for the possible doctors. I will look them up now in New York because I feel lost without my colon rectal surgeon in Florida. I do have some others to look up as well with the WOCN here that I saw, not many, but I will try. This is a very small town compared to where I lived in Florida. The nearest biggest hospital is Albany, which is an hour away, but we have 2 hospitals here in town.

Sincerely,

Coco620

Hi Mary,

I feel in my heart I cannot or should not go for a reversal due to all my health issues. I feel I would die under the knife and would never want someone else to operate on me but my Colon Rectal Surgeon in Florida. But I am in New York and scared if something happens, so I have to have a backup C R surgeon here. It is hard for me, not too many here, only 3 males to choose from in this town unless I travel about an hour or so. I guess I am stuck with Coco but constantly looking and seeking for answers and getting depressed! A lot of crying here, feeling alone except for all you guys trying to help; the best thing I think I have done so far!

Sincerely,

Coco620

I had my surgery at Albany Med, Dr. Lee and his associates were amazing. I quickly learned that you have to be your own expert. People who don't live with this don't understand, and preaching from a book doesn't really address some of the real-life issues that occur. I think this is an amazing forum to exchange ideas. I have provided many inservices to nursing professionals on living with ostomies and the maintenance of such. The first thing I have to say is throw away those prep pads.