URGENT HELP! Need Small bowel perforation/resection/abscess info

Hi All,

I am in need of lots of info! Here's the backstory:

I moved to Japan last July. I was in complete remission and the next month became pregnant. BIG surprise!! I had what I thought was normal pregnancy aches and pains until about mis-second trimester. I was then admitted to the hospital for preterm labor and a crp of 19. An MRI showed inflammation, but that was it. Fast forward and I managed to not deliver until week 32. (not as far along as I wanted to be, but SO much better than delivering at week 26).

Two days later I am having definite LRQ pain and can feel a mass in the vecinity of the TI. Sure enough, my crp is up. A CT shows an abscess, perforation, and an adhesion on my uterous. So they insert a catheter that is taking care of the abscess. The doc said not to worry about the adhesion right now. And they kept an eye on the perforation. That was last week/this week. So now the abscess continues to shrink, but the last test we did showed that there is a leak between the abscess and small bowel. The doc thinks the leak is only from the abscess to small bowel and not the other way around.

So, evidently here in Japan elemental diet (hard core, 100% amino acids) can induce remission and this doc thinks a month of eating only an elemental diet might spare surgery--actually heal the perforations. But he freely admitted there was a good chance I would be back for surgery. Normally I would jump at any chance to avoid surgery, but I've got a difficult situation here abroad. (No family, an 8 yr old who gets out of school at the beginning of June, a baby in the NICU, and a husband who has a really hard job and now he's trying to be mama, daddy, etc). I've been in the hospital for two months and I'm going a bit crazy. (did I mention I just had a baby and I'm on steroids?? Hormones and steroids....what a combo!). So if I have surgery now, the baby and I would be discharged around the same time. But if I wait to see if the elemental diet will work, there is a fair chance I will be back in the hospital after the baby is discharged and my daugter will be out of school. And then my husband would have to take a leave of absence--not good right now.

Ugh! And I don't have a computer with me. So I'm trying to type all this out on my phone and I can't figure out how to scroll down to my list of questions! I hope I remembered all of them and I hope they make sense!

Thanks for your help!

Here's my questions:
Has anyone ever had a perforated bowel and NOT had surgery? What were the circumstances? (I've never heard of a perforated bowel with no surgery)

Thoughts on elemental diet option?

Should I be worried about the adhesion? I'm not having any more kids, so my uterous is not going to be expanding ever again.

How long was your recovery time from surgery? In the hospital? At home?

What are some things about surgery you wish you had known before you had it?

How long did the doctor leave in the catheter to drain an abdominal abscess? What was the outcome?

If this were you, what would you do? I've had mild/moderate disease up to this point. This is by far my worst flare. After all of this will is stay "severe" or will I return to the way things were?

Well...I am not sure of the situation specific to you, but I was diagnosed due to a perforated intestine (they used the word rupture back then). I can not imagine living with a perforation for any stretch of time. You are purging toxic materials into your system until the perf is repaired. Can they heal on their own...I don't know. Mine was a large perf. and had to be repaired as I was poisoning myself to just short of septic coma. I just know how I awful I felt the 3 days I waited before I went into the hospital. I can not imagine taking care of a preemie and a young child while I felt that way.
I think oyu should get a second medical opinion as to what to do immediately. Do you have a prior doc from before you moved to japan? Can you call them (or better yet have your records sent to them) for another opinion?

Hi all. Thanks for your replies. I am SO frustrated!!

I had a small bowel follow through two days ago and the doctor says, "there is no apparent leak from the small intestine to the abscess.".

So I ask him point blank,"do I need surgery?". And he tells me I have three options. 1) stay in the hospital for a MONTH on tpn and bowel rest so everyhing to heal, 2) go home on Monday and eat only elemental diet and low residue diet for a month, or 3) surgery. Then he comes back the next day (yesterday) and says the surgical option is off he table because I don't need it. But he does want to keep me for observation to see if crp goes up, if anything else drains from the abscess, and to make sure I can tolerate a little food. THEN he comes back today and says he discussed my case with some other doctors and they think I need surgery. But he still doesn't. But he does want to keep me until late next week--for observation of the things I listed above.

Aaaaaaagggghhhhh!!!!!!!! I can't take it anymore!!!!! I just want some answers!!

I have reached out to my physician in the States. And the gi here has my file. Now he only thing I can do is wait--especially since the hospital is deserted and only has a skeleton staff on the weekends.

If you know of anyone who has ever had an abscess that had communication with the small bowel and was healed without surgery, please let me know. Like I said earlier, I'm fine with having surgery if I need it. I just can't figure out if it's needed or not. Oh, and the abscess hasn't drained anything since two days after the catheter was placed--over a week ago.

Thanks for any and all replies AND for taking the time and listening to me rant.

Much love from the hospital bed.

Wow, you have got a lot on your plate. Having a baby and a premmie at that is enough but to be feeling so unwell and being away from home must be really difficult. You must be made of strong stuff to cope so well in keeping a clear head and being able to make decisions, WELL DONE.
No i have never had a perforation but there were many times when i was really ill and my husband like yours had to take on the care all 3 children. Hope the Drs are soon able to give you a more definitive answer and that you get the care you need and recover quickly. Please keep in touch and let us know how you all are. Good Luck.
Teresa.

just me , but having had all the problems you have except the baby thing, if you not gonna use it again, why not get it all done at once, uterus,fistula , and abcess. one stop shopping.

to parphrase ' i left my uterus in tokyoooo" sorry mr Bennet!

thank you for all the well wishes and prayers. I think that's all we can live on sometimes.

Well.... It's always an adventure?? The doctor came in today and told me my crp was down to 1 and I might get to go home sometime next week. So basically I'm in here to see if crp goes up and to see if anything else drains from the catheter.....it's been a week and a half since it was put in and nothing has drained since the second day. It was a small abscess to begin with, but do you think it's safe to say nothing else is coming out?? AND I've been eating a thick liquid diet for the past three or four days. I also tried a bottle of the elemental drink today. I chose the yogurt flavor. My husband said it tasted like key lime pie. I don't know about that, but it wasn't as bad as I thought it would. (Auntybert--this is a drink made of 100% amino acids that keeps you nourished when you need bowel rest or something like that. I was told it tastes horrible. My doctor said it would give me all the calories and nutrition I need and if there was a leak into the abscess it wouldn't get infected).

Thank you for asking about the baby! My son is doing very well. He required ventilation and antibiotics (because of my infection) for the first week or so. He also had a touch of jaundice. But he is now breathing on his own and gaining weight like nobody's business! I can't believe he's three weeks old today (gestational age 35 weeks). So now he just has to master the eating and breathing at the same time skill and he's set! (not having that ability is normal, but it's scary the first time you see the red light and loud alarms go off because your child isn't breathing).

So he and I try everyday to get healthier so we can get the heck out of dodge! Next Tuesday will mark 10 weeks since I was first admitted. Yea me. Can I have a cookie now?

Hi friends here,

I am thankful to have found this forum about perforation without surgery. May I ask if anyone survived so far?

My hubby has appendix cancer with peritoneum metastasized and he had abcsess at about 9cm from the small bowel perforation.

He went for surgery but failed as the cancer messed up his abdomen and surgeon was not able to locate the perforation neither pull out a healthy bowel for stoma. They sealed back and termed his condition as incurable and inoperatable.

So doc advised that he might left months as the perforation will eventually caused sepsis. Or his cancer might progress and whichever causes could easily take his life.

He is on drainage (that slowly reduced in the draining) TPN 20hrs and course of antibiotics for 2weeks already.

We hope for the healing of perforation but doc said it will be difficult.

My questions:

1) If the drainage clear after sometimes which means nothing comes out and barium enema showed no leak, he should be able to eat right?

2) Due to cancer treatment, he is very weak. Can we on TPN for lifelong support?

3) He had no high fever so far during this 2weeks. How can we know whether his infection not causing sepsis?

Actually we are very lost as his case has always unprecedented to doctor. Appendix cancer + peritoneum + perforation.. all deadly to doctor's advise.

Does he still has any hope??

Please help!