Health Update and Emotional Struggles After Stoma Surgery

Went for my check-up yesterday with the stoma nurse. Started off with good news:

The nurse said how healthy I was looking and how great my little friend is looking. I have a small area which still hasn't healed, but the nurse says it's all okay and I'm using some powder that the stoma team gave me to help with the healing, and I go back again in a month for another check.

Then the disappointing news:

I hoped to get the biopsy result through, and the nurse didn't have them. I have to go back as an outpatient to see the surgical team to get those. Basically, every test I've had says ulcerative colitis, but they were testing my large bowel to make sure there were no signs of Crohn's. It's unlikely to have been anything other than UC, but I was a little disappointed.

Then the bad news:

Working on the basis that this was UC - the colitis was also in my rectum. I have a few symptoms (which I'll spare you), but I thought it would just go. Maybe that makes me sound silly, but I guessed if they'd left my rectum, it was okay. Apparently not!! They left it there in case I want a reversal in the future, but I've now been told they need to remove it as it can turn to cancer. I came out and was so upset, I didn't want it reversed and thought my surgery was over. I'm assuming that if they remove my rectum, they can do a reversal at the same time should I want it (I have an ileo).?!?! The nurse also told me that had they not done the op, the colitis would have killed me as my large bowel was in such a state. I knew it was bad, but I think now it's just hit me as to how ill I was. I desperately don't want another op, but I had no idea I'd needed one. Feel a bit of a wimp saying that when I read what others have been through on this site, but feel like the battle still isn't over.

I got quite upset when I got home, and I don't think my husband can understand why I cried. Surely that's normal - to get upset when you've been told you need yet more surgery when you thought it was over? He even asked if I was still crying later on because I looked upset. I've accepted I have a new 'little friend' and the thing saved my life. Can I ask, has anyone had trouble dealing with it? Has anyone's partners found it hard? When I get dressed, I have to hide it because he isn't ready to see it. It must be so hard for him to accept and to see someone you love suffer, but I really want to move on. I would like to point out that although my accessories are see-through, I have some lovely colored covers so you can't see my stoma.

I'm so hurt and so confused. I don't want another flipping op. I don't wanna have to walk around hiding what is now part of me. I've got constant mouth ulcers which could be because I'm run down, but I get them with colitis, and I've still bloody got that in part of me, and I don't know how to deal with it. I thought I was doing so well.

Sorry that was so long. Thanks for listening (well, reading!!!)

Hope you are all well,

Mrs. O xx

Hi Mrs. O,

Sorry to hear you're so upset with your news regarding results and disappointments. It's hard thinking your ops are all over and done with, only to find out you need another op on your rectum. It's so refreshing to hear that you have accepted your little friend. Usually, that takes time and affects your physical being and mental health too. Well done with that one. As far as the rectum, it is best gone if that's what the surgical team thinks, and everyone's different on how they heal. It's better for your health all around. Crying and letting out how you feel is normal and is a safety valve. You have to let your feelings out or your health will suffer. As for hubby accepting ileo, most of them do come around to looking at stomas. Maybe he's just afraid of what he will see. It's the fear of the unknown, and as I always say, ignorance isn't bliss. Give him time to come around to looking at the stoma, but if he truly loves you, it won't make any difference to him what it looks like. As you say, it's part of you, and you have to cope with it every day of your life. What you need is support from hubby, not rejection of your little friend. He could always go with you to see the stoma nurse and gradually come around to looking at and accepting what is a part of you. I really hope you and hubby can work together on your trials for the future. I look at it this way: people who end up with stomas are usually very strong-minded people and can usually cope, but there are times we all get downhearted and depressed. I've had a lot of ups and downs in my life with stomas and ops, but I always came back fighting. It's made me a stronger-minded person. Hope all goes well whatever happens. Good luck for the future. Hugsssssssssss, tc ambies...

I have a friend who had her rectum removed because they thought it might get cancer, and now she is upset because she can't get a reversal and wishes that she had waited until the tests showed that the cancer had spread to the rectum. Because once it's gone, there is no return. As far as your hubby, tell him it would be like if he got E.D. You would go to the doctor with him to get the problem fixed, and you wouldn't look at him any less and still love him the same. Sex is the same; you just have to prepare before fun time, just the same as if he had E.D. Just remember, you are still like fine china with an upgrade. You will last longer now.

Hello Mrs. O, I am sorry you got disappointing news. But it's not so bad having your rectum removed. Mine was removed due to cancer. It took about 6 weeks to heal. And it does feel strange at first. My doctor and surgeon told me that people who get reversals usually run into problems and wish they didn't get the reversal. Sometimes they get severe diarrhea or become incontinent. In fact, I know a couple of people who got the reversal and want to go back to the pouch.

Oh Mrs. O, bless you! I know how it feels about waiting for biopsy results..........I had to wait almost five months for mine to be confirmed as there were so many similarities with both Crohn's and UC. I ended up with a confirmation of having something completely different and unique. So, please don't worry yourself so much until you get a final confirmation from your consultant. I, like you, accepted my new friend very quickly as I knew he saved my life, but every now and again I found myself in tears about all the changes in my life. Please don't block your husband out of your grief...he, like your good self, has a lot of adjusting to do......share your feelings and worries with him. After all, you married him for the good and bad times.......he can be a great strength for you. Just remember we're all here for you too and are happy to listen when you want to talk. Take good care, Colm

Words of Encouragement from Ostomy Advocates I Hollister

I had an option for a reversal but decided against it for the exact reasons DH indicated. No one wants additional surgeries; but, when precancerous conditions exist, options are limited. I sleep better at night now knowing that colon cancer has no place to go and that any rectal leakage is really not problematic. The important thing is to enjoy life despite a few bumps and bruises along the way. Make it happen!

Hi Mrs. O, I had my operation 3 months ago and I've also just been told that I have to have my rectum removed. I, like you, am devastated and had no idea that I would need further surgery. I am still trying to recover from two large gaping holes in my abdomen left following an infection in my wound. They are waiting for them to heal up before they cut me open again!! I am so sorry that we are both in the same situation, but I like the comment Primeboy made about enjoying life and making it happen. We can do that, can't we? Of course we can.

Hi Mrs. O - I know what you've gone through has been awful, but the worst possible thing would have been to have kept your rectum and had cancer there. I had rectal cancer 9 years ago and after 5 major surgeries I have a permanent colostomy, not because of the cancer, but because of the cancer treatment. Radiation therapy is necessary to eradicate rectal cancer, and it is also highly recurrent so believe me, you will in time be much more at peace without something like that hanging over your head! You have your life and a loving spouse - those are two big plusses in my book. Please join an ostomy support group and get support from others who have made good adjustments to the new normal. BTW: I also had a reversal of my first colostomy in 2003 - and had so many problems using my radiated rectum I was practically begging my surgeon for the colostomy by 2008!)

It's such a nightmare, but since I've had my op, I can't believe how many of us there are. It's hard to live with and takes a long time physically and mentally to get over it, that's if we ever do!x

Mrs. O---please do not think for one minute that you are being silly. You cry as long and as much as you need to. Get it out and surely do not keep it bottled in. Surgery sucks, I have had 9 total so far and not one has been easy. Thank God we are all still alive. Life sucks with a colostomy but so many people say life sucks when they don't even have one. I am 37 and can remember only 1 month in my life that I did not have a plastic bag attached to my abdomen. Urostomy since I was 18 months. Got that switched to an Indiana pouch and ended up with a colostomy because of my radiated skin. I am so sorry that your husband isn't ready to see it, that bag does not define you as a person. Don't worry about him, worry about yourself. Pinky is right, please join a support group. It helps so much. Please message me if you need someone to talk to. I am a very good listener. I will send you my phone number and we can chat by phone. I feel your pain and would like to help. Know you're not alone.

Hi all, wanted to say a massive thank you to you all, really appreciate your comments. Will have to become a full member I think so I can message and chat more. Thank you once again xxxxxxxxxxxx

Mrs. O, I am so sorry to hear of anyone who has to struggle with this. I had a few things that just really hit me while I was reading your message. Firstly, you described having a lot of mouth ulcers. This is a strong possibility that this is Crohn's rather than UC. When my large intestine was removed and when I was in a flare-up, I had a lot of problems in my mouth, especially my tongue. I rinsed with liquid (children's) Benadryl and Maalox. I swished it for 30 seconds and then you can swallow it or spit it out. It numbs the ulcers and helps to clear them up. Secondly, I had the ileostomy in Oct. and the rectum removal later in May. Fortunately, my doc had explained this would be the case from the moment I woke up from the ileo. I was too weak from the first surgery, so she said she had to give me time to recover for part II. I will be honest, I am very lucky. I have a high pain threshold and am maybe too stupid to stay down for long, but the rectum removal was on a Friday and I went back to work on Monday. I used no pain meds and only spent 1 night in the hospital. I had cancerous cells that they found when my ileo was done, so I wanted to have the rest out so I didn't have to worry about cancer. I was also told that with Crohn's, a reversal was not an option. The ileo surgery was quite painful, so I thought I didn't want to experience that again anyway. Thirdly, see if you can get a flesh-colored bag. This helps to maybe get the hubby to see you with a bag. The stoma is pretty red and shocking to some people. My ex didn't know what to expect, and when he saw me get out of the shower and saw the stoma, he thought it looked red and painful, and was so shocked that I actually saw him cringe. That is one memory I wish I could forget. I never let him see me without the bag on again. If you have a strapless bra, the soft stretchy kind, try putting that around your waist and bag for intimate times. When your hubby sees you are more comfortable with it, he will get better too. Best wishes to you and please don't give up :)

You are a truly unique and brave soul, and your husband is so lucky to have you. When I had my surgery so many years ago, there was no question about not doing the colectomy. As hard as it is to think of another surgery, think of all the pain you went through before. You definitely don't want to go back to that! I decided to have my surgery when I had another bout with pyoderma gangrenosum (as bad as it sounds, believe me) and have never looked back. You have so many people to support you, just think of how healthy you will feel after the surgery. No more pain, no more worries about a very real, prevalent cancer. Good luck to you.

Mrs. O - I am new to this too and can relate to your challenges. It is so difficult to be on the hormonal/emotional rollercoaster of being grateful for life in one moment, then dealing with anger, uncertainty, and frustration, and then grieving the loss of well-being and functioning. I received so much great support from people on this site and really understand now that it will take time to heal. Part of the healing process is being extra gentle and kind to myself, and getting enough rest. I find I am much more emotional, weepy, and depressed when I am tired. I always feel better after a nap (my naps after 4 months post-surgery are actually long periods of sleep...easily can sleep from 11-5 daily and then sleep all night)! I also always feel better when I am able to take some quiet time to center myself and to get back in touch with the faith that I can have peace. Hang in there - you are not alone! Suzanne