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Old 07-18-2008, 08:05 PM   #1
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adventurer HB User
Unhappy Has anyone ever had colon surgery? or colostomy bag? Please Help!!

I met with my surgeon for the first time on Thursday and I'm going to have to have part or all of my entire colon removed. The only question remaining is whether or not they will have to take the rectum as well which means I would have to have a colostomy bag. I'm only 34 years old and that's a very scary thought.

Last year I had about 18 inches of my colon removed, the sigmoid colon. The surgeon has suggested I have two more tests two determine which surgery to have. One test is an anal manometry test to test the pelvic floor muscles. If that test is normal then they can take take out the entire large intestine and then connect the small intestine to my rectum and I won't have to have a colostomy bag. If the test shows there is a problem I will have to have a bag. The only way around it would be if they were able to use the ilium to make a new rectum and then they can connect the small intestine to the new rectum.

The other test they want to do is a biopsy to rule out Hirschsprung's (sp?) Disease. If I have that, then I definitely have to have a colostomy bag.

Has anyone here had an anal manometry test?

Has anyone had a new rectum made out of their ilium and was it successful?

Is there anyone on here around my age that has a colostomy bag? If so, what's it like? To me it sounds like it will ruin my life, it's one of my worst fears and I'm scared to death I'm going to have to have one. Any words of advice or encouragement would be greatly appreciated.

Thanks so much,

A~

 
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Old 07-19-2008, 04:39 PM   #2
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Re: Has anyone ever had colon surgery? or colostomy bag? Please Help!!

The only question I can answer for you is yes, I have had a colostomy bag, although mine was temporary and I had it reversed after about 3 months. It could be that knowing it was temporary put me in a better frame of mind about it, but I found it wasn't as bad as I thought it might be. I did not have any problems with my colostomy and actually almost missed having it when I had the reversal. I've had more problems since being reconnected than before and need to go in for a short scope, and I almost wish I had the bag still there to deal with the diarrhea when I do my bowel prep. It actually can be more convenient at times!

You will have a skin barrier that the bag attaches to, and it may irritate your skin some. There are products that you can apply to deal with irritation. When you are preparing for your colostomy, a stoma nurse will probably visit you to go over things and answer questions. Mine also was there afterward to help me get used to my appliance and caring for the stoma. I won't sugar coat it - it's horrifying at first to look at, but if you are a practical person it quickly becomes just something you deal with and not so frightening. You don't have to suddenly rush out and buy all new clothes to cover it, unless of course you normally wear skin tight clothing - it won't be as comfortable and your colostomy bag would likely be noticable. Assuming you don't wear tight clothes, most people will never know you have a colostomy unless you tell them.

At first you will need pouches that can be drained, washed out, and reused. Eventually your body will settle into a pattern and you will know when it's going to produce stool. When that happens, you can switch to closed pouches that you simply throw away - much more convenient that cleaning them out. I was settled into routine after just a few weeks, and could count on mine to not produce anything through the night until I was awake in the morning. Then it would do its thing at basically the same time every day unless I ate something weird that threw the routine off. The pouches themselves are made of plastic but covered in cloth also and they don't make noise when you move to give it away. They also have filters in them and you can add deodorant to further control odor, although I have to say I never smelled anything coming from mine. They fit close to your body and really no one else could see mine through my clothes.

Your life is not over when you have a colostomy. You can still do just about anything you could do before colostomy. I know it is scary....believe me, I know. I felt the exact same way, but as I came to accept it I found it was not so scary after all. Yes, things will change for you. But you can get through it if you keep a positive outlook. I hope this helps you, if only a little. good luck.

Last edited by zimagirl79; 07-19-2008 at 04:40 PM.

 
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Old 07-21-2008, 01:00 PM   #3
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Re: Has anyone ever had colon surgery? or colostomy bag? Please Help!!

Dear A
I am an osteomate for over 12 years, which means that I have my stoma from the age of 34. I have Crohn's disease, which the doctors discovered at the age of 28. The idea of a stoma was dreadfull. It was like a amputation and I felt that someone shaked the world from under me. I wish I had someone to tell me more about stomas and I am very glad that I had the opportunity to get a stoma, because it gave my QUALITY of life back. The relief of pain was fantastic (the surgeon did the operation with a epidural, because I am scared of normal anaesthetics.) I live a 90% normal life. I wore a bikini at the beach (I use small stoma bags, which fits into my underwear and all the people I meet, can not believe that I have a stoma.) To have a stoma is not as bad as to feel sick the whole time. Please feel free to contact me on my private e-mail address, because I answered this under my son's name. Good luck, M. (mwjanize@mweb.co.za)

 
Old 07-21-2008, 01:21 PM   #4
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Re: Has anyone ever had colon surgery? or colostomy bag? Please Help!!

thank you so much for replying and giving me more details. I had no idea what to expect and I'm scared to death. I met with the surgeon on Thursday and she needs to me to complete two more tests before they determine exactly what they need to do. Apparently she needs to do a biopsy to rule out Hirschsprung's Disease and then I have to have an anal manometry test also to see if my pelvic floor muscles are working. That's the test I'm worried about, it will basically determine whether or not I'll have to have a colostomy bag or not.

One other question, how big is it? I mean, I have NO idea...

Is there anything else you wish someone had told you to prepare you about it BEFORE you had it? You know, either to reassure you or just so you were mentally prepared?

Thanks,
A~

 
Old 07-22-2008, 07:10 AM   #5
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Re: Has anyone ever had colon surgery? or colostomy bag? Please Help!!

Hi adventurer,

Oye, you've got a lot going on. I don't know about the tests and possible surgeries you are facing. But I do know a little about colostomy bags.

In 2000, when I was 44, I went straight from the ER for emergency surgery for what turned out to be badly infected diverticulitis, a fiscula, and a large abscess. Knowing nothing about what might happen, I woke up with a temporary colostomy. It was supposed to be for 6 to 8 weeks, but the reconnection did not take place for almost 6 months.

In the hospital, thinking about going home and taking care of that thing, I was completely horrified and disgusted. But, I got used to it. And, honestly, if I were ever facing the possibility of a permanent colostomy, I know I would get through it.

My brother-in-law ended up with a permanent colostomy 5 years ago (a cancerous growth was too close to the rectum for a mere resection). He's doing fine (and believe me, he not the most adaptable of people). He was really lucky to have a fantastic nurse who has a colostomy herself when he had surgery.

It interferes with life MUCH less than you would imagine. With an ostomy, one has a "wafer" that is about 3.5-4 inches square glued to the area (with the ostomy sticking through an opening in the middle). (Sorry to make it sound gruesome, but I can't think of another way to put it; and, at times, it is gruesome.) Standard bags are about 6 by 8 inches (as I recall) and attach to the wafer. But you do not have to wear bags all the time. I did not learn so much about various strategies, because mine was temporary, but you can use a plug as you learn the timing of your GI track, and other things.

The wikipedia article about colostomy has some interesting links. Some may come across as flippant, but I think everyone who has a colostomy from time to time has bouts of some pretty sick humor about the whole thing.

You'll get through it, adventurer, and have plenty of advertures ahead! Keep us posted.

 
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Old 07-30-2008, 10:54 PM   #6
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Re: Has anyone ever had colon surgery? or colostomy bag? Please Help!!

I am 26 and have had a colostomy for almost 3 years now. I had worked in a nursing home with patients who had colostomies before I recieved one of my own. So I Thought that I knew everything going into it. There are so many different style, shapes, sizes and what not. But the thing that I think most people find the most shocking about a colostomy is the smell of the gas and feces when the bag is emptied. There are a lot of foods and what not that I have been advised to stay away from, since I got the colostomy, to help reduce the amount of gas that is accumulating in my bag. I think that was kinda weird for me at 1st. Always feeling like there was something bulging in my pants. I could feel it but others couldn't even notice it.

There were times that I hated having it but honestly, it isn't so bad anymore. I often forget I have it, Until I toot and my 3 1/2 year old daughter reminds me about it.

Good Luck with all your tests.
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Old 07-31-2008, 04:38 AM   #7
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Re: Has anyone ever had colon surgery? or colostomy bag? Please Help!!

lol Suzie Q! I had forgotten how much entertainment I provided for my kids with the toots!

 
Old 08-22-2008, 06:17 PM   #8
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Wink Crohns for 16 years / Colostomy Bag for 7 years

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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Old 01-25-2009, 09:49 AM   #9
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Re: Has anyone ever had colon surgery? or colostomy bag? Please Help!!

I recently had surgery for crohns to take out a 6 inch portion that turned into a nightmare. It didn't go back together so I ended up with a temporary colostomy and thank god it was temporary. I had it reversed on the 29th of Dec. Now I am recouperating from 3 surgeries that I have had in the past 3 months. My problem is that my body has never had a chance to recouperate from the first 2 surgeries before having the third one. My question is that now, I am having horrible body aches and stifness and pain. I am still taking percocet for the pain and have to take it before getting out of bed in the morning. How long are these aches going to last? What can I do to get well and relieve them? I get out and about and don't lay around in bed all day. Are there exercises I can do? I just graduated from nursing school also and am studying for boards and desperately want to get them taken and get to work !! Can someone please help me !!!!

 
Old 01-25-2009, 04:51 PM   #10
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Re: Crohns for 16 years / Colostomy Bag for 7 years

Katherine....all I can say after reading your post is Bless your heart!!!

I also have Crohn's but I have never had to endure any surgeries. I am going thru a few things right now, but I tell you what...I haven't complained thus far and I CERTAINLY will not start now!

WOW....You just continue to stay strong and positive

You have no idea how much you have just inspired me (and you may not understand it, but believe me when I tell you) and I wish you ALL THE BEST!!

You and EVERYONE on this thread are in my Prayers

 
Old 01-26-2009, 12:12 PM   #11
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nursiej HB User
Re: Has anyone ever had colon surgery? or colostomy bag? Please Help!!

Does anyone have any input about these body aches I am wondering about after surgery and how long they will last ?? PLEASE !!

 
Old 01-27-2009, 12:15 PM   #12
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Re: Has anyone ever had colon surgery? or colostomy bag? Please Help!!

I really learned alot from your story. My heart goes out to you for you are a brave little trooper to be so young and through so much. I had an overlapping sphincteroplasty on Jan. 2nd and found out that 90% of my sphincter muscle is gone. Do not know why, Dr is baffled but he wants to take leg muscle to rebuild a new sphinter muscle. When I went to see him on the 15th he asked if he could proceed with a stoma constuction on Feb 11th. He said it is only to stop my fecal incontinence so I can heal quicker so he can proceed with the anal reconstuction. I have to see the stoma nurse on the 29th and have no dealings with this procedure in the past. I was curious about the drops for odor. Was wondering about that. All I know from my home health nurse is that there is different sizes. I read that they put the stoma at the lowest point to aid with digestion. Dr told me he will look on both sides of my abdomen for intestines that are least scarred and easy to get to. I was hospitalized in May 2008 for 10 days for dieviculitis so I know I already have issues with my left side. Anything you could tell me in detail about wound care and clamping, drops and anything else pertaining to a colostomy would be appreciated. I have learned alot from you. So appreciate you passing it along. Katliz

 
Old 01-27-2009, 11:19 PM   #13
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Re: Has anyone ever had colon surgery? or colostomy bag? Please Help!!

Well. Guess no one is going to answer me or reply to my posting.

 
Old 01-28-2009, 11:23 AM   #14
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Re: Has anyone ever had colon surgery? or colostomy bag? Please Help!!

I go to a great independent/small pharmacy and they have a great "ostomy" section. That is my first suggestion...find a great pharmacy and/or medical supply store, preferably one that employs someone with knowledge and experience with ostomy's. In regards to the odor drops I use, the brand is Hollister, the name is M-9...definitely use the drops and not the spray. I will warn you, the color is BRIGHT blue, so be careful not to spill. The bottle is pretty big, so I buy the little travel size of the Crest Mouthwash bottles and the mouthwash is blue, so I dump that out, rinse the bottle and fill it with the odor drops, put it in a little ziploc and it goes everywhere with me! There is another brand that I used in the very beginning and I loved it b/c it was a very light color and it came in a little bottle already, but the discontinued the little bottles and the large bottle is two or three times the price of the Hollister. When I first received my colostomy bag, I was not using the right style b/c of the "accidents" I was having. I ended up needing a "convex" style, which just means the opening around the stoma is convex in shape and therefore, holds the stoma up, so that it is not as easy for the stoma to go below the opening and then drainage leaks out and then the "accidents" occur. Accidents do still happen on occasion, but it is usually due to my "output" being VERY active and the bag filling up to fast, which happens, of course in the middle of the night...convenient :-(
or if my stoma is what I call growing and shrinking a lot and therefore, it does get below the opening and oh well! I use a one piece, 1" opening, clear, convex with a drainage clamp. My Crohns is still such a problem (side effects of the disease, scar tissue/adhesions, residual disease) that now "my bag" stays pretty active, so I do have to empty it quite a bit. If I am going out, I just don't eat what I know will "get it going" and with the odor drops I use, it really is not an issue when I am out. I do keep an extra bag, clamp, paste and gauze wipes in a little ziploc in my glove box or in my purse/bag if I am going to be gone all day. I always take 3-4 bags and supplies with me on trips, b/c I learned the hard way that it is not always easy to find ostomy supplies! When I first received the colostomy, I would change the bag every 2-3 days, but now I tend to change it every 5 days, unless I am having an issue with skin irritation (can be very painful, especially when you have to change the bag b/c of the tape and glue), like during the summer, the heat and the humidity cause me to get a rash under the tape on the bag...pleasant! I use a powder/skin barrier wipe during that time and it helps. Getting back to the variety of bags, I have always used the one piece, but I know they make a large variety, such as two piece, shorter and/or longer lengths of the actual bag, etc.
Clothing wise, I cannot wear the jersey/thin fabric b/c you can see the outline of the bag, but other than that, I wear it all and make it work! The first 3 years, I had the bag, I was hesitant about the beach and the dreaded bathing suit situation, but I now proudly wear a tankini top, the sexier the better to make up for the fact that I pair it with a little swim skirt. J-Crew makes a great swim skirt that has the bikini built in and then I also have one pieces that I pair with a little cover up skirt or shorts. I just put the drops in my beach bag and when the bag starts to fill up, to where I feel like it is noticeable, I to the restroom and then I continue to enjoy my day. Lingerie/loungewear, not as bad as you would think either, first of all, I have been with the same man for ever, so it is not like he does not know I have a "bag", but I still do my best to pick the least sheer piece. I love clothing, so I wear a little bit of everything, from jeans to leggings, to skirts, dresses, etc. Low rise jeans/pants are not my friend b/c of the bag, but I don't like that style anyways, so no big deal. Although, I do find that for me the low rise hipslung/boyshort panties work best b/c the top hits right under where the wafer part of the bag sits and they stay out of the way. Also, when I am shopping and I am trying on clothes, bathing suits, lingerie, etc. I always let the sales person know my situation, so they are not startled when they see it, but also so they can let me know if they can see the outline of the bag through the clothing item and 99% of the them, are flabbergasted that I have a bag and would not have had a clue, if I had not mentioned it, which is actually true for the majority of people I meet.
Once my bag starts to fill up and "bulge", which if I can help it, I don't let it get over half full, I feel like you can see it more, so I do pay close attention, when I am wearing closer fitting pants, dresses or even jeans and lounge pants and I do tend to empty it more.
One other tid bit or helpful hint, has to do with the "noise" issue...my stoma loves to make a lot of noise and there are times, of course, when it is dead quiet, that it really gets going and sounds like it is playing a song. If I am at home or just around family, we just laugh when it really gets going, but if I am out, people usually just assume it is my stomach growling or gurgling! If I am out and about and I can tell it is going to be noisy, I do hold my hand over my stoma and kind of gently press to try to keep it quiet. Sometimes, it is just very gassy and then sometimes, the gas gets trapped, which I take gas medicine and then my bag fills up completely with air. The gas has picked up over the past year or two, it really was not that big of an issue for the first 5 years.
Well, I do not know if any of this has helped you, but I will be glad to answer any questions or give you any of my helpful hints that I have learned, which have made living with "the bag" a little bit easier.

 
Old 01-28-2009, 02:30 PM   #15
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trying2staycalm HB User
Re: Has anyone ever had colon surgery? or colostomy bag? Please Help!!

Nursij~

My apology. I didn't mean to make you feel as though your post was not important. And I am sorry that you are feeling so much pain and discomfort

I too have Crohn's but I've never had to have any surgery for that, but I did just have surgery yesterday to have uterine fibroids removed, so I am also experiencing aches and pains. I am also taking Percocet for this pain.

Have you spoken with your Gastroenterologist about these aches/pains that you are having? There's got to be somthing they can do or suggest to help make you more comfortable. Being as though you had 3 surgeries back to back like that, I would think they would be more involved in your recovery process.

Also, Congratulations on your receiving your certification for nursing
Is there anything you can remember from your studies about pain management? I know from personal experience that when we're in pain, unfortunatly that's the main focus at the moment...the pain and how to make it stop!

I do hope you feel better soon and that you will keep us posted on your progress
__________________
"And This Too Shall Pass."

Last edited by trying2staycalm; 01-28-2009 at 02:34 PM.

 
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