Severe Post-Surgery Pain After Eating - Need Help!

Since my surgery for an ileo in mid-March, I have had 2 blockages. The first one was 2 weeks after the surgery, but it was only partial. It cleared itself out after I drank the CT scan prep. I was sent home. May 20th was the killer. Full-fledged blockage. I never felt it coming on at all. It had nothing to do with anything I ate. I was loaded with adhesions. I was gutted like a fish from top to bottom. They were wrapped around my intestines from my stomach to my stoma. I was in surgery for many hours and spent 12 days in the hospital. The first few weeks, I was in pain, of course, from the surgery itself, but at least I could eat. Well, in the past month, I have been in so much pain whenever I eat. It is debilitating. If I don't take a pain med, I cannot even move. It feels like everything stops moving, as nothing goes into my bag unless I sit reclined in a chair and place a strong massager on my stomach right above the stoma for at least 15 minutes. It does not matter what I eat: soft food or normal food. It just does not move. Not even pudding, yogurt, cereal, anything. Liquids are about all I can tolerate, and even sometimes not even that. I am at a total loss. I am so sick of this. I don't even know who to see. The surgeon that originally did my surgery left the practice and is much too far for me to go. The emergency surgery was done in my local hospital just by a general surgeon because there was no choice. I would have died. They even found a necrotic mass attached to one of the intestines that had to be removed. Now I only eat at night when I know I am not going out so I can vibrate it down and out. This is the only thing that relieves the pain. Has anyone else ever experienced this problem? If so, how did you resolve it? I don't even have a doctor at this point other than my primary. I just don't know who to trust, so I do nothing but deal with it. I know I need a good gastro doctor, but who? I live in South Jersey but will travel anywhere at this point, as I know I can no longer live like this. I will not live very long if this continues. No nutrition. I am so weak I don't get up till noon, sometimes later. I live alone. I can hardly take care of my pets. My daughter has already taken him for me twice and kept him for 3 weeks. I am so depressed I had to see a psychologist, although I don't think she can help much. Help. Help. Help. Please. Any suggestion will be welcomed at this point. I need a doctor with a real brain if there are any. I am 63, and I am going to be a great grandmother. I would like to see this baby of my granddaughter's. I already missed my grandson's shower and wedding. I am sick of this no life.

Bunkie,

I have had several blockages over the 32 years that I have an ileo, but never like what you are explaining. I don't want to sound blunt and uncaring. This is certainly not the case, but it sounds like you are going down the tubes fast. I think it sounds much like an emergency situation and you should get to an emergency room ASAP. Once there, they will admit you and everything else should fall into place i.e., they will mobilize the right medical team. I see you live in NJ and Whiting is not exactly an RFD place. You should get someone to take you or if you have to, call an ambulance. Listen, you don't want peritonitis which will happen if your gut bursts. I have been there and believe me I am very lucky to be alive. Good luck!!

X_

I have had an ostomy for 4 years (last week) had bladder cancer stage 4 so it was surgery or dying - I had also had some problems with blockage (in fact was in hospital 2 months ago). It hurt like hell, was vomiting and the pain was unbearable for days. They were going to operate, but I asked them to wait due to all the horror stories I have heard and thank God I waited, 3 days later, I had a bowel movement and all was better, no surgery required, so had I let them, they would have operated for nothing. I do not trust all doctors - I do a lot of research, come on here a lot and read everyone's problems, get ideas so in case something similar happens to me, I at least have an idea. I research everything that doctors want to do to me before I give them the ok - and tell my husband everything in case of an emergency. I also type out all instructions for the doctors and the hospital in case I go in and am unable to talk if I'm out, so that helps a lot also. I list all my meds, my problems, what has been done to date, etc. It's a good idea for people like us, as most hospitals have no clue what to do to us, other than to say - "let's operate". My surgeon is Dr. Grimaldi in Illinois - he is the best - he will not do unnecessary surgeries and knows what the heck he is doing - he's great - I trust him completely! You might be able to call him and ask him for a reference in your area - he is at 708 481-8883 - his assistant is Lynette - he is well known and perhaps can help you - give it a shot! I know how you feel and will help you in any way I can - we're around the same age so can relate, it is rough being alone - I don't know if I would have made it if it wasn't for my husband, as I caught MRSA 5 days after coming home from the hospital after my surgery and ended up back in - almost died from the MRSA - was in the hospital 2 more weeks and then went home with a germ phobia - so was dealing with a new ostomy which I couldn't even look at, let alone try to deal with and then was scared to death of catching everything from germs - even 4 years later, still have problems with germs, so one thing follows another sometimes, but you go on, deal with it and live the best life you can! I would definitely look for another doctor - that can be the difference between living, dying and living the best life you can - I know that for a fact, as I'm sure all others out there do too. Any other questions, please feel free to email me. Shirlgirl

Hi Bunkie, it sounds like you are really suffering and need another surgery. I had a colostomy several weeks ago due to rectal cancer. It was a difficult surgery involving the removal of my rectum and anus. But I had a great surgeon. He is Dr. Mark Pello of Camden Cooper Hospital in South Jersey. He is considered to be one of the best colorectal surgeons in the U.S. And I was lucky to have him as my surgeon. I'm not sure how far away you are from Camden. If you are interested, I will send you his office number. He has two or three offices, one located in Voorhees, NJ.
DH

Dear DH, I would really appreciate the name of your surgeon in Camden, Dr. Pello. Camden is about an hour from me, and so is Voorhees. I am so desperate, I just stare out the window. Last night, I thought I was in deep trouble again as all I ate was some cottage cheese all day. All I passed in the bag after the pain was very watery. Then, by 11pm, I was so sick. This was about 6 hours after I ate a small bowl of cottage cheese. I threw it all up. I am not a vomiter by all means. I hardly ever get sick like this. Thank God I still had some Zofran. I took a Vicodin and went to sleep. I am not eating again until I see a doctor. It will just kill me. Please, I don't know how to work this site. I wish we could talk, but I don't know how to do this. I don't want to get stuck with another emergency half-ass surgery. They will kill me. Please, I would like this phone number. If you can contact me in a different way, by email or phone, soon let me know. Also, do you know of a good gastroenterologist in that area affiliated with him? Thanks so much for your interest. I hope someday when I am well, I can help someone. Truly, Judy.

Hi Bunkie, happy to hear from you. Dr. Pello's office number in Voorhees is 856 325 6565.
I am sure you will be happy with him. He did a great job with me. And he is one of the best in America. He also has a great personality and takes his time answering any questions you have. He made me feel very comfortable. Good luck, and let me know how things work out.
Donna