Debilitating multisystem dysfunction from diverticulitis surgery

I'm so sorry that you are dealing with such an awful situation! That must be very hard on you! And yet, you seem to be coping admirably with it! You are taking things into your own hands with all of your research. That's fantastic! That's not being combative. That's being sensible!

I took care of my husband who had lung cancer. He died in 2024. I also did a lot of research in his situation and found a lot of helpful issues for him that the doctors weren't mentioning. In fact, they often started turning to me for advice which made me wonder why we were paying them $700 a visit! My husband's situation wasn't as complicated as yours but the one thing that really helped him was prayer. God was there for both of us during a very terrible time in our lives. Thanks to God answering our prayers my husband lived 14 years with lung cancer before he died. He wasn't in that much pain until the last. It sounds like you need God too! You don't have to go to church to find God; although church is very nice. Just talk to God like he was your best friend and he is. After all, God made you and he can fix you! Besides, at this point what have you got to lose?

Have you inquired at your hospital to see if they have financial assistance available that would help with your expenses? Many hospitals do have that kind of assistance. Also the Mormon Church will help people financially too. So will other churches but I personally know about the Mormon Church because I'm a Mormon.

Read the side effects of all of your medications, vitamins and supplements to see if any of them could be causing any of your problems. That's how I identified some of my husband's problems. The doctors should have been telling us this information but they didn't.

Also analyze your diet. Try and avoid any food with preservatives and additives in it. That can cause physical problems. Most importantly, drink a lot of water. It really helps our body function and our bodies need all the help they can get; especially when they are ill.

Think of the positive side. You are only 35. That's young! Your body has the ability to fight harder at that age than mine does at age 79. Plus you have come to the right place for advice. The people on this forum are very knowledgable and kind. They were very supportive when my husband died.

I will say a prayer for you. With God, anything is possible.
I wish you the best.
Merry Christmas!
PML

Wow, so sorry to hear all of this. So many complications at one time and trying to figure all of it out!
After my surgery (robotic and open) my main issue is feeling full so quickly and weight loss. My biggest fear is adhesions and what is happening inside my belly. I have done well and no diverticulitis episodes or IBS since surgery.
Never stop being your own advocate and never give up. Hopefully you will get more insight from others on this site.
Hugs

@pml Merry Christmas.

@linda82 Google Gemini (Pro version) has honestly been so helpful. I knew a lot about my diverticulitis already, but with the additional issues, it has helped me piece things together and given me a sense of power back to my health I haven't felt in a while. I'm pretty type A so when I am out of control of a situation I start to "glitch" (lol!) or when depressed, just shut down which is what has been a lot of the last 5 years. Which has made my work, and debt, and social life almost all impossible to maintain. I'm hoping for the right care this time around if I can help it, before anything becomes emergent. But having Gemini help me set up an In Case of Emergency packet, makes me feel much better as well. And it has even yelled at me to stop stressing and shut down for the night. 🤣
I know AI and the Internet are taboo in medicine. But it is coming whether we like it or not. And it's always only ever as smart as the user and the inputs or parameters.
I definitely encourage trying it out. Be cautious but be curious! Be careful, though. Some apps are very much worse than others. Use multiple. Trial and error. Test. It's all for science! I was always a good grade student, but I never enjoyed learning so much until I was an adult, especially about my own body. Always make sure you surround yourself with one or two of the absolute most honest and trusting providers, as well for anyone reading this. A couple of mine will do everything they can unless it's out of their areas, then they help me push for the rest.

One of the worst parts??
Being visibly a healthy 35 year old male. In today's world of assumptions, and mass media hypersensalization of common societal normal, makes the struggle extra difficult. Now everything portrayed is in my mind making me feel insecure or insufficient or weak. There's people out there who have it worse, right? Yes. Absolutely. But I'm not living their life 😔 I'm barely able to live my own.

Hi Devin, what a journey you have suffered through and endured…on so many levels, too ! You have 2 good ‘cards’—your young age and willingness to research and advocate for yourself… sending prayers that you find a team of docs to finally lead you back to your life….this site can be very helpful, and give some encouragement as well…so you are not alone !

Find a doc who listens. Until you get one, keep searching. Listening comes before treating. You are a very complex case and will need a team to treat you most likely. That means a national level clinic. I have a friend who is probably seen as combative because of prior mishandling of her medical conditions. It’s easy to feel angry when that happens. Recognize that the next docs you see did not cause your problems and you need to win them over to your side. (Talking to the choir here I know.) Your write up here is very comprehensive. You need a way to present it to new docs without seeming to be telling them what to do. My wife had complex back issues that led to a failed surgery that led to chronic pain. At some point medicine runs out of answers. I hope that is not the case for you, but be careful you don’t go a step too far. We did. You have my best wishes for finding help so that you feel better and get your life back.

@djfilipiak I can understand your frustration about finding some one to help you. I had a modified multivisceral transplant due to total gut failure. Very few hospitals offer this transplant, I had to go to Indianapolis. I went to IU Health and saw Dr Mangus. He is phenomenal in all things gut and gut failure. Have you considered traveling to get the help you need? He's definitely worth traveling, but you may set up a telehealth call do discuss your case with him. I have a friend that just had bowel surgery after she got so many no's from local providers.

@djfilipiak, with all that you have going on I can understand researching using an AI agent like Geminia Pro. The way you phrase your question or prompts can lead to different responses. That’s why it is absolutely critical that you verify the information and check the original sources that are referenced. Click the link icon to review the original source to see if it comes from a trusted health source.

AI generated answers can contain errors and incorrect information. Also keep in mind that any personal health information you enter, goes into the AI’s database.

We have developed guidelines around the use of AI on Mayo Clinic Connect.
- What is Generative AI? What does this mean on Mayo Clinic Connect? https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/what-is-generative-ai-artificial-intelligence-what-does-this-mean-on-mayo-clinic-connect/

The part I'd like to underline is that AI tools do not replace human judgment or oversight. Any text, image or video generated by AI should be viewed as a starting point, not verified factual information. It may contain inaccuracies, biases and other problems. As you mentioned, always, fact check and review for accuracy, relevance, and unbiased balance.

I agree with @nycmusic, that you're doing a great job researching and advocating for yourself, including submitting second opinion requests at the nation's top hospitals and seeking care where there is a multidisciplinary approach.

@colleenyoung yes. I never really considered AI until I got bored recently. Then it was providing me things I already had confirmed and done. It's only recently that I've integrated it but I've been putting it as much to the test as possible.
Unfortunately Mayo clinic denied my case, so here I go navigating another brick wall 😔
Merry Christmas.