Home from hospital

I was in the hospital for almost a week with a partial blockage and low potassium. I have another parastomal hernia. Ugh. How depressing.

The doctor thinks I have been having partial blockages by the intestines wrapping themselves around adhesions and this causes twisting and untwisting, or either the intestines are getting trapped in the hernia sac since the ct scan shows the mesentery fat inside the parastomal hernia.

We decided to wait until surgery becomes absolutely necessary since the blockage resolved.

I'm trying to get to the end of the school year also, being a bus driver.

I've been struggling with keeping my potassium up, even in the hospital, the potassium stayed right at low normal, or right under normal.

Has anyone else struggled with this?

I feel like my health is spiraling out of control.

I am not feeling very positive, but trying to hang on.

So sorry you're having to go through this. I just had my stoma moved to the other side because of a very small parastomal hernia. Before that had been to the er about five times with blockages and had many more at home. I had exploratory surgery in December and she couldn't find the hernia-- too small. This last time a few weeks ago my bowel was getting strangled and I needed surgery to move my stoma. Hoping things will be better now.

I actually had no adhesions because my previous surgeries were all lapro. Probably have some now as this one was open.

Not sure I have any words of wisdom. I was completely fine before the blockage that led to my last surgery. It's scary.

Do you have a hernia belt? Maybe that would help some. Can you see your surgeon for an appointment when you're not in crisis? Is surgery inevitable? If so would it be better to plan it? If not are there things you can do?

Hang in. Wish I had more to offer.

Don't really have any advice for you, just wanted to say that I'm sorry for all you've been going through and hope your doctor can figure something out soon.

I haven't got a 2nd opinion and half my friends and family thinks I should.

I don't want to start doctor hopping because it scares me. I feel that my doctor knows me inside, very well, and honestly, I do trust him with my life.

And, I never want to get like Rosemary, who saw every doctor around the USA and not one of them could fix her. She ate baby food and never did what any of them told her and I'm terrified I'll end up like her. She didn't work and stared at her stoma all day everyday. I loved her, but she was obsessed.

That's why I choose to eat and live everyday. I can't just not eat because I'm in fear of my next blockage??? :(

I do think I'll know when to go to the hospital again.

Didn't your stoma turn color? I'll be sure to keep a close eye on that.

I truly don't want another surgery, ever. But if it's an emergency, then yes, of course I'll get it.

I think waiting is the answer though as more surgery creates more adhesions. Ugh and the 4th parastomal hernia really just pisses me off.. Not sure if there is a permanent fix for these hernias.

I went back to work today. Not too bad. My stomach is still swollen and I had a terrible night last night with a partial blockage. I just drank some pickle juice and it eventually let loose.

I think it's the hernia that is causing these blockages because you can see 2 spots on my stomach where the food is caught. It is bizarre.

Answers, I know Rosemary's experience is terrifying, but I don't think you're making the same kinds of decisions she did. For whatever reasons (and I'm sure there were reasons), she couldn't find anyone to trust.... then she would take a risk and trust someone totally untrustworthy, which just reinforced that she couldn't trust anyone.... she was great in so many ways, and I miss her too ... but her story was complicated, as all of ours are, and it wasn't your story.... it's great that you have a doctor you trust.

I only mentioned the second opinion because I ended up getting on de facto, as my surgeon moved out of town in December, and this surgery was kind of emergency, so I got a new surgeon... was very lucky... it was the one my surgeon had recommended, and my nurse and the residents I knew were able to reassure me about her.... I think it was a complicated situation -- I don't think my surgeon made a mistake.... but there was something good about getting another pair of eyes/hands involved.... and that's all I was thinking.... maybe even asking your surgeon to consult w/a trusted colleague just because your case is complicated (perhaps he is already doing that....)

Totally understand not wanting more adhesions....

Maybe it would be good to give yourself a week or so on liquids, just to let the swelling go down? Just a thought.... not to eat baby food for the rest of your life.... .but I know that after a blockage my system is extra tender for a while....

Good that the blockage cleared last night and that you were able to go to work.

Hope you can also find some little things to give yourself a treat, just to not feel like everything is awful.... whatever is nice for you -- playing some music you like, getting some flowers in the house, etc.....

My mom thinks I should get a consult with Dr Remzi at Cleveland Clinic. I might send over my records and see if that's an option. I know it certainly can't hurt and I read he's an excellent surgeon.

I still been feeling fatigued and that's disturbing. I been drinking coconut water for potassium and eating bananas. I have had cramps off and on, but nothing too serious.

I hope I can hang on and not need another surgery anytime soon..

Hi,

I just want to give you my support. I too have adhesions that give me complications. My last surgical 'peek' was during my cholecystectomy, surgeon was pleased that my adhesions weren't as bad as he thought......but like you said....it can just take 1.

If you can get another surgical consult, I think that will place you in a better place. Elective is always better. You have every right to approach your health with awareness, advocating for a definitive plan. Any doctor that doesn't support that, isn't a doctor. And comparing your concerns with Rosemary's, please don't.

Update us on CC!!