Where to from here...

Hi all

This may seem long-winded, but I do need to talk to those who understand what I'm talking about.

My name is Sharon, and my friend I call "Moan-a."

I've had Moan-a since July last year when I was rushed to the hospital after passing out with a severe diverticula attack. I'd been having these for over 20 years, having been hospitalized 3 times prior. This time, however, they said they would go in, keyhole, and take a look-see!

I woke to find, to my shock and disappointment, a colostomy bag. The surgeon said I had finally perforated my colon with a large abscess needing removal.

Now I blame myself for this happening. I'm a lazy eater and loathe cooking. Fine rich food and pub meals with a nice glass or two of a preferred wine were customary daytime or nighttime fare. Mornings always started with 3 large mugs of black coffee. Exercise? Nah, though I conscientiously put on my Fitbit tracker every day. What I'm saying here is I could see everything I'd been doing wrong to put me in the situation I was in.

So after my release from the hospital, with regrets, fear of the unknown, and disappointments in myself, I set about trying to change. I tried a few new eating styles like healthy sandwiches, salads, grilled fish, etc. I tried to follow suggestions and recommendations, and though I was putting on weight, feeling overwhelmed most days, I coped. Then I started to think I've really got to push myself to lose some weight so my surgeon would do a reversal at Christmas. He'd said 6 months in, my insides were a bit of a mess, and he had to take more of my colon than he wanted. Also, it is retracted to make it worse. So I decided to do Keto. Well, that ended 2 months back with me passing out on my laundry floor and another rush to the hospital.

8 days later, 6 with fluids being pumped in and 2 with restricted fluid count, I was released. Verdict: they found a bunch of pouches up under my left kidney and just above my abdomen, all above my stoma.

Recommendation: remove the rest of my large colon and just have the small one.

I thought long and hard about this and decided not to proceed...yet! The surgeon said my choice, but I'd be back.

Since then, I'm now so depressed. I hate how I look, how I feel, who I am. I'm back where I started, doing everything wrong again. I won't exercise. I'm turning into a fat lazy person who is just feeling sorry for herself while knowing I can do better, be better. I'm not stupid, or am I?

I'm now to have a colonoscopy due. My sodium count is very low, then very high. Honestly, I can't make head or tails of what I must do to help myself.

Any comments, no matter how truthful, appreciated.

My comment would be to listen to your surgeon. If I were you, I would get my colon removed and go for a permanent ileostomy, but that's just my opinion.

Regards, IGGIE

Get a second opinion from another qualified surgeon...even a third one. It is a big decision.

Nothing wrong with getting a second and even third opinion. It's not even 12 months since the first surgery, so depression is quite normal. You and your body have been to hell and back and are still going through it now. Don't worry too much about exercise, but going for a walk, even if only starting with 5 minutes a day, would be good just for your mental health, and just a bonus on top of being good for your body. And as I always say, talk, talk, talk, and then talk some more on here or to family and friends or both. Talking about how you're feeling is the best therapy.

Hi, I'm not big on reading, so I'll go for what I did read. At 40 years old, colon and the whole business removed, so I just have a small intestine. Never been happier. Troubles, sure. Advice: stay hydrated and eat better. I eat everything I did before with very few exceptions. For me, at the time of surgery, I had 3 young kids and was in the middle of a divorce, so my attitude was this will not end my life, and it hasn't. With one exception, I want to swim, and I'll take any advice from anyone on how I can get my wafer wet and continue on my day and/or keep it from getting wet. Ok, back to you! Attitude is what works and has kept me healthy and alive. I've had my ileostomy for 35 years, and yes, a few visits to the ER, and I just had hernia surgery, but I'm still here. Best of luck.

Avoiding Ostomy Bag Leaking | Managing Ostomy Leaks with LeeAnne Hayden

Hello Sharon

Firstly, you won't be having a colostomy; you will be having an ileostomy if the large intestine is to be removed. Stop blaming yourself and just get on with what you need to be doing; it's really not that difficult to do. And get a second opinion, as mentioned, for your own peace of mind. I wish you well and keep us updated.

Get another opinion, but love yourself enough to become your best you. I have an ileostomy, and I don't want it either. Even after 10 years, I still sometimes dread when I have to change my pouch and all. But I feel better and am actually very lucky at this second chance. I learned how to live and make the most out of every day. Find enjoyment in your life even when we have to make tough decisions.

Thank you, Iggy. I read your articles all the time and value your opinion as I do others on this site.

You're right. Fear of the unknown is my enemy at the moment.

Can't hurt to get a couple more opinions. But, in the meantime, try to be good and forgiving to yourself. You might need to do a paradigm shift in your mind to eat right and exercise. I have had my ileostomy for 50 years, and I am thankful for it, but if there was a chance that I didn't need to have it, I would take that chance. It will be a big change and adjustment for you, but you can do it if you have to.

Walk, walk, walk. With somebody, if you can. I just had my hernias fixed last month, so I know how it can feel just getting out of the hospital and now facing another. Get another opinion, then make a decision and do it. Notice the difference here - you are not "allowing" the doctor to do this to you; you are an intelligent woman making a decision and guiding your own health care. It makes a lot of difference to your outlook and also to your successful outcome. All the best to you as you struggle along this path - we are here (virtually) to walk along with you. We care.

Today I sit on my chair with my little dog, angry that I didn't have the energy or desire to put on a touch of make-up to go watch my grandson (11 yrs) play soccer. I'm again, or as usual, angry with myself.

However, I hear you and those of many others on this site, and they ring true. I am in charge of my life. I am seeking a second opinion. I know a couch potato is not who I want to be. My motto has always been

"If I want to be, it's up to me."

I just have to make it my mantra. Easier said than done, but I will try.

Thank you to all who responded. I've read your messages many times, and I'm hearing you.

Hi Moan-A,

You have obviously had a very stressful time, and you don't say if you have any support, which is rather vital when in your position. Don't get yourself into a bad place because there are many, many people who have been through something similar to you and are now living a normal life. I have had my stoma for 40 years after five years of absolute hell. I was determined that it was not going to change my lifestyle very much, and it hasn't. In fact, my lifestyle improved, and friends could not believe that I had a plastic bag stuck to my stomach. All of the pouch suppliers have trained staff, including nurses, who are there to help you, and they are fantastic, so please try asking them for help, and you will be surprised at the difference it makes. It is very reassuring to know that there is someone on the end of the phone who will help you, give professional advice, or just have a friendly chat; it makes a big difference, so try it! Good luck, and you can always ask for further help from your fellow ostomates.

I often feel like you. I've had a permanent colostomy and urostomy for a little over 2 years. It seems like I can't do anything right. I have to lose weight to have my colostomy stoma moved and hernia repaired.

I don't understand life anymore. I hope you find the right thing to be your muse to get motivated. I wish you all the best.

What do you mean by pouches up under your left kidney and just above your abdomen?

That sounds really tough, Sharon (and Moan-a). It sounds like you are keeping your boxing gloves on and hitting yourself! You took a big step sharing your truth; maybe the next step could be lowering your hands and removing the boxing gloves. Stop beating yourself up. With much compassion, hugs. Perhaps a mental health therapist could help work through some of the self-assigned shame and blame. Thanks for your vulnerability and sharing; it took guts (pun intended, hehehe). See you around!

Hello and thanks for your wise and kind words. Today I said I was going to make a difference. I've been out with my dog Skye to the park. I walked until she was exhausted—err, not a lot there—and then walked some more when I got home. I tidied up my backyard and the neighbor's front porch (she broke her hip recently), and I feel human for the first time in months. Tomorrow's another day. I'll take what you're all saying. Thank you for just being there. So appreciated.

MOAN-A

You're welcome. I'm proud of you! 😊

I know we can all do this. It just gets difficult at times.

What did you mean about the pouches up under your left kidney and just above your abdomen? I'm trying to understand. Thank you. 

Hi

I actually meant some Divaticula  was found in my bowel just below my kidney and above my waist.  My specialist said it can happen as they can travel.  I really should have asked more questions but I was ill and in shock I still had a Divaticula concern effecting my kidney when I was under the impression the operation had removed my problem.

Stupid thought.