Looking for advice, stubborn post surgery infection

Sweet,
I am sorry to hear of your daughter's problems.. it sounds horrible. I do not have a pouch, but did have to have a total
colectomy.
1~ I understand about the MANY c.t. scans..Tomorrow I go for my 23rd in 1 year. One heartless s.o.b. doctor told me "You WILL get leukemia, I GUARANTEE it, but I have to do one anyway"...But thankfully my primary care doc is on top of that all with tons of bloodwork all the time .
2~ What you are describing sounds more like a rejection to the pouch maybe..like she is allergic to something used in this surgery and her body is trying to reject it. I am not sure if that makes sense, but that would seem to be the only logical thing.
Hope things work out ok for you guys..lots of luck and prayers for you :)

Ditto what both above said - Jpouch may just not be the thing for her and definitely get infectious disease involved.

Thanks for your input. She saw the surgeon today for post hospital visit and he felt last month's hospital admission CT scan that showed some fluid was "normal" and did not really believe her pain was from the abscess/infection and that after a manual exam she is all healed up and ready to come off the antibiotics. In the hospital she did have some weird symptoms of very severe headache along with the fever and abd. pain. They thought she had west Nile or viral encephalitis, but then 1 week later came down with Mono. Anyway, today she begged her surgeon to keep her on antibiotics so she could finish the semester without fearing another episode of pain & hospital stay. He reluctantly agreed. It is all so confusing! If I contact Mayo or Cleveland, do I ask to see a surgeon?, JPouch specialist, or infectious disease doc?

So sorry, hope that you find the right approach soon.

Just one comment -- getting an opinion from Mayo or CC doesn't necessarily mean more tests, as they can look at the tests that were already done. People here have mentioned that these places do online second opinions, where they just review all the files. I'm not sure if that's a good option for you or not, just thought I'd mention. Might be an intermediate step to help you decide whether it's worth it to bring her in.

You would definitely want a place that has a team approach where you don't have to assemble the players yourself.

Thanks again for all your suggestions.
ddd45-What is an EUA? We are at a big teaching hospital now where they do quite a few J-pouches, but I'm not aware of a GI J-pouch specialist there. There seems to me that there is no collaboration among the docs. During the last hospital stay, she was visited by many residents & fellow from surgery service, from neurology service (for the terrible headaches), the neurologist and then since it was a holiday and the CR surgeons were all out of town, we saw the Gen. Surgeon on call. Everyone just defers to the original surgeon (who was out of town & never saw her during her stay). In the previous hospital stay for infection, the GI docs & their residents come visit but never say much and always defer decisions to surgeon since that is who admits her. They did not have an infectious disease doc see her.

Another frustration is when I tried to talk to her about what plan to take, she just gets so sad and tearful and frustrated with me for stressing her out. She is working really hard and focusing all energies on doing well in college and just cannot allow herself to always worry. To be 20 yrs old and know you've had way too much radiation, had many plans cancelled or put on hold, chose surgery so life would be more predictable and pain-free (which despite all this IS more pain free than UC) and still have all the uncertainties of another surgery (Step 3 connecting pouch) and the complications it may involve is sometimes just too much. (wow that is really a run-on sentence) The surgeon did tell her there is no rush to get reconnected and if she'd prefer to finish a few more years of college, that is okay.

Blueglass- I did actually use the CC online second opinion prior to her surgery. I was very happy with the physician who responded. He really seemed to care. That probably is a good route to go, but I can't imagine how they will know if an infection is cleared up while she is still on the antibiotics. I understand why she wants to stay on them after getting stabbing abdominal pain both times after getting off. The surgeon said he could feel a difference and said the anastomosis area had a normal resistance upon exam, unlike when it was inflamed. The surgeon wants her to schedule another dynamic proctography, but not until she is ready for the surgery and has the takedown scheduled.
Do you think they use a team approach at Mayo or CC? You hit the nail on the head. I don't want to be the one trying to make sure all the bases have been covered.

One more question. Is it normal after these big abdominal surgeries to have some lower abdominal pain with extensive walking? When she was running this summer she felt okay, but sometimes going for very long walks causes some intermittent pain.

Sorry for the long posts and probably too much info, but all your insights are very helpful. Thanks so much.

Sweet Peas Mom

WOW! After everything YOU have gone thru with your daughter, I am thankful for the kidney stones mine has :) Unfortunately, hers are so big before she has any symptoms, it always mean surgical removal..and they are coming in like 4 and 5 month increments.
Anyway, I really hope things work out for her and you..with all this stress make sure you are doing what you need to do for YOU!! If you get too stressed and end up sick you will be of no use to her when she really needs you. Keep up the good work, you are a great mom :)
Hugs and prayers.

sweetpeas.. I have found that primary care docs are almost useless once you get a complicated medical history. Guess they might be of value if I broke my arm or something, but once you get to the level of your daughter.. they usually seem scared and offer no assistance other than to shove you off to specialists.

EUA is exam under anesthesia.. Basically a smaller surgery.

I am a CC patient now. I was not orginally. I switched due to many problems with my local surgeons and GI doctors. I would say that a lot of the things that you experienced with your daughter's situation happen even at CC. Surgeons are too busy. It's a teaching hospital so you are stuck with residents and fellows. And docs don't do a great job of communicating with each other. The difference though is they are fast at pulling in docs from other areas.. and that once you get to the real docs.. they really know their stuff. However, the communication, between the doctors and to the patients is still very poor.

I have found that works best for us is to accept that you have to be your own advocate. And you have to be strong and determined about it. No Mrs. Sweet Pea. Instead... "this is my daugheter, and I demand to find out who is in charge, why she is being tested for this, why is she on these drugs, and what is the plan for her pain, etc...." You get my idea? In my case, I take that role if I am not in the hospital, but if I am so sick or in the hospital, my husband does that.
AFter about 11 surgeries I have learned quite a few things to help the ride go a bit better:
speak up, ask questions, and demand answers.
Don't let them intimidate you with their "power trips"
you do not have to accept treatment or care from residents or fellows. Personally, I have an extremely long list of problems that have happened due to residents or fellows.
If you have a problem, demand to see a "real" doctor.
Try to have surgery at the beginning of the week. Higher chances that the real doctors will be around post surgery.
Demand to know what doctor (not resident or fellow) is covering should your surgeon go out of town or on vacation.
Make sure both yourself and your advocate (my husband in my case) feel that you really are well enough to be discharged from the hospital. In my first 2 surgeries.. done locally, they discharged me way too early which caused huge complications and lengthy readmittances. As awful as hospitals are.. sometimes it is better to stay there longer to make sure things are really ok before going home.
GI doctors are oftentimes far better and knowledgeable at post surgery jpouch care and problems than the surgeons.

And lastly, as for her abdominal pain and antibiotics, etc.. it leads me to think that something is definitely wrong with her right now. And I would sure want that to be figured out and solved far before even considering step 3 surgery. Post surgery from step 3 can be very very difficult. Even if she gets fully well from her current state, she may want to consider holding out on that until college is over, especially since you said she is handling the loop ileo ok.
hope some of this might help you in figuring out how to proceed. i can imagine she is very traumatized and stressed by all of this, and wants to just ignore it all. been there done that. But I think you are correct in trying to get some better help and figuring out a plan for her care.
best of luck.