New to ileostomy. Partial gastrectomy,,total colectomy

I’m so sorry you’re having to go through so much.

I wish I had an answer for you. Just don't give up. We're rooting for you. Doctors aren't magicians but but sometimes they can perform miracles. We're praying your next surgery will give you what you need.

Thank you! I have 6 children( I guess 5,my 11 year old passed from seizure in his sleep). I wish the Dr's would understand that they need their mother well. I'm asking for the same thing a newborn would do, To be able to sleep, eat pee,and poop. This should be easy to accomplish.

Thank you! I haven't had any surgeries. I'm just passed on to another Dr. Nothing has been resolved in 14 years so at least this Dr. Is trying to rectify the issues. I saw the bariatric oncologist last week and he said that he won't do the surgery at the same time as the colorectal Dr. That means recovering from each separately. I knew he was going to do this. He tried to pass me back to a Dr. I had 10 years ago. It's like being at the DMV...my number is called but they decide to send me back to the end of the line. Last week I had 7 medical appointments. I'm a minister and I pray for everyone is going through this. Sometimes we're giving things in life to better empathize with others that are caught in it.

I can only imagine the anguish you must be feeling. I had nowhere near the problems you have and it was only 8 months but it was still very trying, both physically and mentally. I finally got my surgery and so far it looks successful. It's been 6 weeks now. The bright side during my ordeal was I got to skip urgent care and go straight to the ER every time I was about to collapse. Urgent Care wouldn't take me because I was "too complicated". Even having to do separate surgeries, at least it sounds like there's light at the end of your tunnel. You'll come out of it stronger. Keep the faith and don't ever give up!

I'm very frustrated right now. At the beginning of June,my colorectal surgeon was in Portugal. I did everything I could to wait for his return. Now for the past 2 1/2 weeks the nurse is saying that he wants my records from Yale because he feels it would be helpful. I was at Yale from 2018- 2021. I tried to download the records but it was for 54 visits and over 400 pages. I had a places try to I guess compress the files and it still didn't send. I know there is absolutely nothing in those files that can assist the doctor. I went through them on my computer and sent any information that I thought was pertinent through the patient portal. I recieved a very upsetting response from the nurse on how they don't need " tidbits". She was sending for the files and told me to make sure that I was available at all times just incase Yale tried to reach me. That was a week and a half ago. I wrote the nurse this morning. I recieved a response that she would call Yale again. It's been since March 19th that I've been dealing with colitis, Paralyzed bladder,inflamed gallbladder and pancreatitis.Retching constantly from the gastric fibrosis. Still alive. Bedridden at this point and isolated. My hope is pretty much gone. I've stopped talking to my children. They don't need to know.

I can relate to what you're going through dealing with the "professionals". One of my favorites is a nurse who frequently wants me to send pictures of things that I can't take pictures of. At least not without a camera like they use to take internal pictures. Fighting with the insurance company was maddening. Insurance says its approved, no authorization required. DME suppliers can't order the supplies because it's not approved. Says doc needs to request approval. Doc tries but can't because he's not an authorized DME supplier. Then insurance company tells the doc he needs to submit it directly to them but they won't take it because it has to come from the DME supplier. It never got resolved but I finally got my surgery so I don't need the supplies anymore. It was maddening dealing with the professionals when I was about out of wound bags. I had been buying them on eBay but shipping was taking forever and I couldn't afford any more. I'm 8 weeks out from my surgery so I'm expecting the call to resume my chemo. My hair is a half inch long now. Don't mind the chemo but I really missed my hair. I had no idea what a difference it makes being bald and not having eyebrows or eyelashes. I was okay with losing it to save my life but it's nice to have it back even if it's just a little bit for a little while. I'm hoping I get strong enough to pick up my granddaughter before she's too big to be picked up. She'll be 2 in January. It's only been in the last week that she could even sit on my lap. My grandson and I were bonded from the day he was born. My granddaughter is just recently getting to know me. Not getting to bond with her was one of the hardest things for me to deal with.
I don't think you should shut your children out. I know I would have been devastated if I found out my mom was going through all the that trauma and didn't tell me. I can understand why you don't want tell them but I think you should. You're in my prayers.

Thank you Gin64. You probably know that some days seam impossible. I can't do this to my children. I had a child pass at 11 years old unexpectedly. My daughter was 5 at the time and my sons were teenagers. My 34 year old son is still dealing with guilt from the sibling " pranks" that he pulled on his brother. For this reason, I have fought like hell for the past 14 years because I refused to have my children suffer again from another loss.
I just don't feel like I have any fight left. Tomorrow I may think differently.
You are in my prayers also.

I know you want to protect your children. That's was good parents do. Since I don't know you or your children, I can only say what I would want my mother to do. Is there someone who does know you and your children who could offer advice? I may not know you but I have faith that you will do what's best for you and your kids. I know it will be hard for them to know you're suffering and not being able to help. But they may still want to know. Something you might consider is putting it in writing how much you love them and the reason for not telling them. Put it with your legal papers so they'll find it. Then someday, hopefully decades from now when the inevitable happens, they won't have wonder why you didn't tell them and lean on them for support. As long as I have breath in me, I'll be praying for Divine guidance for you. You have much too much on your plate to handle alone.

Thank you Gin. This is definitely a better week for me. I am scheduled finally for the surgery. I realize that I have to look at the good that this surgery will bring instead of the suffering. I talked to a friend about handling my legal papers,bank accounts and properties if need be. This was part of the overwhelming load I was carrying. I think everyone who goes through this worries about that stuff on top of the illness and " what do I need to get completed " prior to surgery. I'm a paster as well and I was worried about the church. Who will be available to help others, did I talk to the guy to that mows the lawn? Are monies available in an emergency? I'm better! Lol....this is when you say give it to God and focus on health. Thank you for your kind words. I needed to hear it from someone who knows.