Seeking Encouragement for Colostomy Reversal & Hernia Repair

This is the first time I have posted on this site. I've been reading it for a while and all of you have helped me feel less like a freak and given me hope. I started with this whole thing last May with pain which I chose to ignore because I was afraid of cancer. Many people in my family have had cancer and I was three weeks away from my son's wedding.

When it got bad and I went to a specialist, he said he couldn't believe I was still functioning because I had an abscess which was infected. I ended up with a perforated bowel. I cried and whined that I didn't want to miss my son's wedding so he treated me in the hospital for a week with antibiotics and put a JP drain on me. I did get to go to the wedding and no one knew what I was wearing under that beautiful dress.

I ended up wearing the drain all summer and surgery was scheduled for September. The first surgery was done laparoscopic and I felt great. I told my doctor that I loved him and he said there was a chance this could fail. Sure enough, three days out of the hospital, I got really sick and ended up in emergency surgery at 2:00 AM. I woke up with a colostomy and a huge incision. It's been tough working like this as I am a car sales consultant and I'm always afraid of the bag smelling or exploding. You all know what I mean. Now I have developed a hernia that needs to be fixed.

Now I'm setting up a reversal surgery and hernia repair. My doctor says I don't have much colon left but he thinks he can fix me. I just want to hear from anyone who can give me some encouragement as I'm scared to death. I want to get rid of this colostomy more than anything but I dread the surgery. Before this whole episode, I had never been sick so this has really thrown me for a loop.

Hi there MJMuraco, and welcome along too. I know you'll find plenty of answers here too. Like you, I'm awaiting reversal and a hernia repair too. I was very fortunate to have had a wonderful consultant who saved my life, I'm told. I ended up being diagnosed with Cronkyte-Canada Syndrome, which is a very unusual thing to have. I had all the symptoms of having colon cancer, but when checked, re-checked, and re-checked again, they found it was a benign tumor.....Thank God! Like you, I also had family members die from cancer and was equally scared.
Thankfully, now I have been given a second chance and am making the most of it. I was just in for a checkup this morning, and my new consultant is happy to go ahead with the reversal asap. So I hope to hear from him very soon. Unfortunately, like my old consultant, he wants to perform two separate operations for the reversal first and then the hernia later. I'm still happy to take his advice as I've just received an email from my old consultant who's just returned to Bahrain advising me to ask for two separate operations as my reversal could be a little complicated anyway.
But let me recommend to you to look up Sunnydisposition's posts here as she's been the most recent "reversee" I know here. She doesn't pull any punches, but she's been a great comfort for me while I've been waiting. So, don't be afraid to ask any specific questions? My advice is to remain positive and ask your consultant as many questions as you need to make you feel comfortable. We're all here for as much support as you need too. Take good care, Colm

Thank you Dandare for your response and encouragement. I did read Sunnydisposition's post and it sure helps to know other ostomates who understand what I'm going through. I spoke with my doctor's office this morning and my doctor is so busy that they can't get me in to surgery until at least February. His girl says she is scheduling 10 surgeries for him!! I really like my doctor and everyone says he's the best so I guess I have to wait even though I wish I could get this done now!! I'm in pain today because my hernia seems to be getting bigger. Anyone else experience this?

Hi again MJ, don't panic and I'd advise making a food diary as it helps pick out the foods that cause you pain. My main demons are mushrooms, peas, and nuts. If I remember to chew them enough, it's not so bad, but when I forget, I can have to lie down for most of the day to relieve the pain. I just hope you're not overdoing it by lifting too much. I've had to be a lot more careful as I'm working with a small farm. I do wear a belt when I know I'll be lifting more than usual. You've only got another month to go, so don't rush......everything will work out fine. I've had to wait since last February until now....I know how busy these surgeons can be. Hang in there, Colm

Thank you for your response. I'm still waiting for a surgery date and it is torture!! I am trying to be patient but this hernia is getting bigger and more uncomfortable. I'm watching everything I eat to eliminate pain within but I do get constipated and that's no fun with a bag!! I'm being very careful about lifting. Hope all is well with you. MJ

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Hi Colm, I have to tell you that I enjoy reading all your posts, and you are one brave guy and also very patient, as I know you have been waiting for your reversal a long time, but you never give up. I have a para stoma hernia and nobody wants to perform surgery on me as I don't do well since I have breathing problems. I was lucky to pull through the cancer surgery which had all kinds of problems for me, so I can't even think of a reversal due to health problems. I come on this site often to read about others, as I don't have much family and really no one to help or listen to me so I come on here to get support. Colm, I feel like many of the people I know ran away from me when cancer came into my life and especially the colostomy. Well thanks for listening and good luck to you with the reversal. Regards, Joyce

I finally got a date for my reversal and hernia repair. It's two weeks away on Feb. 3rd. I'm scared and nervous but looking forward to going back to my old self and feeling normal. This whole experience has certainly opened my eyes to how my attitude affects everything. This site has helped me with all of the advice and knowing that I'm not alone. Can anyone give me any input as to how to mentally prepare for this upcoming surgery?

Hi MJ, thank you for the kind comment about my post. I am glad it has helped. It has been very healing for me to come here and type about it, as you said, you can feel very alone with the bag and associated stigma and worry.
I also had an abscess, and when they went in to remove the 12 inches of bowel, they also found cancer. But I am fine now. They got it all, and I hardly think about it.
I was most upset about the hernia. It was massive and got bigger and bigger. Turning in the night became a right pain, and seeing myself without clothes, I could not believe what had happened. I was so pleased I found the 'apparel place'. The extra strong underbust corset was the only thing that totally flattened the bump. It needs putting on while you lay on the bed, but it works. I have such a big collection of foundation garments now.
Mentally prepare yourself by being positive in your expectations and keep saying to yourself, 'this too will pass'. This really helped in the 2 weeks post-op. It is the first 2 weeks which are the worst. Take all your medication and don't suffer. I found using oxygen when getting out of bed for the first time really helped. Also, see my list in the previous posts. It is a long one, but it all helped.
Even though I am still not 100%, I am glad I did it and would have it done again. I am back to one poo a day and no diarrhea. The trouble has been with the mesh. Ask your surgeon if the one they are using on you is one that has shown to shrink. I think that has happened to me. I have done research, and there are other ways of fixing the incisional hernia. Ask the surgeon about 'separation of parts' where they use muscles from either side of the tummy and bring them around the other way to close the hernia. It is good, as there is no interruption of blood supply. Or using pig skin which does not reject.
My tummy is so much flatter than before (it was hanging down by 8 inches), but it still looks like a mountain range and is bumpy. But a light corset soon fixes that.
Make sure the plan for having your bowel clear before the operation is a good one, as my enema did not work pre-op, and I ended up having the operation with a bowel full. Not good. And make sure you are well hydrated and have had lots of protein before the op, as you will not fancy eating for a couple of days post-op.
Much love and good luck.
Sunny xxx

Hi there Hometown, sorry I only just saw your post. And thank you for your kind words. I know exactly where you're coming from when you talk about people running away. I too have had much the same experience at times. After working in the hospitality industry for years and having a busy cafe and meeting so many folk every day, life sure has quietened down considerably. It saddens me at times when I look back at my life before my stoma, but I've always tried to remain positive and look forward. I know it can be difficult to keep to this philosophy, but brooding gets you nowhere except down and frustrated. Here's hoping you soon meet up with a surgeon willing to see to your hernia. But looking back at some of the previous posts here on hernias might give you some help. So, stay positive my dear and you'll soon be looking at better days ahead! Take good care, Colm

Hi Colm. I would love to hear how your operation and hernia repair went?
I am good now, been back to work for 8 weeks and really busy.
I am waiting for one small operation as the hole that opened up before Christmas would not close, but it has now pushed a small bit of mesh out. This is not good for infection risk, so they need to open the wound and cut the old scar away and sew me up again. I am having it done under local anesthetic as I don't do well under general, it really affects my memory.
It is great to be bag free, but I am not taking it for granted. On Tuesday, I am giving a talk to 100 healthcare professionals about what it is like to live with the bag and how stigmatizing it is, etc. Just going to try and alter perceptions and make healthcare workers know a bit about it.
Ruth
P.S. Just got my 2-year cancer scan results... all clear!

Ruth, I too had the surgery, the bag, and the reversal. Between the 2 surgeries, I had open wounds and it was impossible and terrible at the same time. Learning how to pack and unpack, clean, etc. was something I hope I never experience again. The wound closed and not 2 days had gone by and another had opened up. Of course, this happened during the wee hours of the morning, (3:00 am). Prior to going to bed, I had severe pain and took some Advil. I awoke around 3 am and found blood on my nightgown and there was my second wound. Not only was this early morning, but a holiday so of course no doctors available except the emergency room. I refused that but instead called my surgeon who was on call. He called in a prescription which I picked up at the all-night pharmacy and went to his office the following Tuesday. He felt that the 2 wounds were tunneled together so he just deadened my ab area and connected both wounds. After a few weeks and that healed, I didn't understand why my stoma products didn't fit anymore, and the reason was that I now had a hernia. I won't bore you with the mundane details of my life with my stoma, I'm sure you had the same problems. I finally had my reversal, 8 months after my first surgery and I was thrilled to be bagless. And you'll never believe what happened next, 5 weeks after surgery, another wound was about to open when I went back to my surgeon. He opened it and I dealt with the new one which closed in a matter of 2-3 weeks.

I'm so glad you're going to have an audience of healthcare professionals. While they deal with this problem all the time, they can't possibly understand what it's like living with the colostomy and all the other problems involved. I do think maybe the problems you and I had only happen to a small percentage, at least I would hope so. My surgeon was great and my wound care specialists went out of their way to help me deal. I don't know where I would have been without them. Let me know how your talk went.

Kathy S

Wow, there's so many different situations and stories. I have a temporary colostomy due to a colonoscopy tear. I've had it for 3 months and I'm getting it reversed in 3 weeks. How do you know if you have a hernia? I'm going to have it done laparoscopically if possible. The surgeon said he might leave the opening to heal from the inside. How long does that take? Should I have had a colorectal specialist do it instead of a general surgeon who specializes in laparoscopy?