has anyone had surgery after going on TPN?

I guess I'm addressing this question to anyone who has lost most of their intestines (in particular, all of their ileum), or to those like me who don't have a colostomy because you no longer have bowel movements (because of having no small or large bowel left). I saw yet another GYN oncological surgeon yesterday and she agrees with the other specialists I've seen that surgery is not an option for me (to remove the mass on my ovary). Because of being TPN dependent, no intestines (in particular the small bowel, which is responsible for a lot of immune system function), and the blood clots I had last year, my chance of surviving surgery, of any sort, is basically zero. Has anyone ever been told that? Have any of you had surgery after you went on TPN (and again, if you have almost no small or large intestine at all)? Did you have complications? I'm supposing now it doesn't matter if this mass is or isn't cancerous. They can't remove it because the surgery will likely kill me, and if it is cancerous, it will eventually metastasize and the cancer will kill me.

By daviandsteve
Posted October 25, 2009 at 5:29 pm
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Woeful,

Since being on TPN I have had four major surgeries, one of which was for metastasis of fallopian cancer. I have a lot more small and large bowel than you do, but I am missing a significant portion. I have approx. fourteen inches of jejunem, which is anastamosed to my transverse colon. Therefore, in addition to having lost nearly all jejunem and the illeum, I am missing my ascending colon as well. I don't have the clotting issues that you do. So my situation is different than yours, but still quite complicated. Despite the lack of bowel, I don't seem to have a compromised immune system. The biggest issue for Dr. Boice (gyno-onc surgeon) when he did the '06 surgery to remove all of the metastatic masses (and three cancerous lymph nodes) was my adhesions. I did require two pints of blood, but otherwise, the surgery and recovery were unremarkable. During the week prior to surgery, I infused extra bags of TPN, so I was as healthy as I could possibly be(at least nutrition-wise) when Dr. B operated. This is just my experience; of course I can't advise you what to do. Perhaps, though, since Dr. B has experience with at least one SBS/TPN patient (me!) your doctor could consult with him. He is very well known in Maryland.

I'm so sorry you are facing such a dreadful decision, and my heart goes out to you and your mother as I know your sister is not doing well.

I am always available to talk to fellow TPN patients and their families; you can find my number on Oley's web site.

Please do keep us all posted.

Davi

By Woeful
Posted October 26, 2009 at 2:30 pm
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Davi,

I'm wondering if the larger concern with me is first the blood clots (the surgeons seem 'certain' I'm going to throw another clot if they operate) and second, no one still being sure why so much went so wrong last year. I think they are worried too anything they cut inside won't stay sewed together. That's what happened last year when they first attempted a traditional colostomy. I still had a fair amount of jejunum left, but the next day it start leaking (which is how I became septic) and fluid started building up around my lungs, etc. It was like my tissue just shredded inside. So by the time they got that taken care of, they'd had to remove all but like 3-4 inches of jejunum (only my duodenum is "complete"). My labs are also constantly all over the place, so maybe that's a concern too. (I know I had two blood transfusions at some point during last year's hospitalization too, along with about 5 intubations/re-intubations.) I had no idea you had fallopian cancer (or, my memory being what it is anymore, I probably forgot). I'm so sorry :( Is all well now?

So you had four major surgeries post-TPN. What was your overall health status before the surgery? (They keep calling me "medically fragile.") The adhesions is another worry (and why laprascopic surgery is completely out of the question). I'm very prone to adhesions (of my 6 bowel resections, only the first one was for actual active Crohn's, the rest were partial obstructions due to massive adhesion build-up). The surgeon I saw Friday seems to think, given my history, that my insides will be a 'mess' of adhesions and the worry is knicking an organ while trying to remove any adhesions. This particular surgeon seems to believe pretty strongly that this mass is a result of the extensiveness of last year's surgery. That I have either massive fluid build-up, masses of adhesions, or something else that I can't remember what she called (percutaneous something or other, I think it was), which is why she's suggesting needle aspiration. But I worry about torsion. If I'm that full of adhesions, it stands to reason at some point, what organs I do have left are going to end up strangled by adhesions at some point, I would think. You also said your jejunum is anastomosed to your transverse colon, so yeah, you definitely have more intestine to 'play' with. I have no colon at all now, or rather, I do, but it's "free-floating" -- basically an inch and a half of colon connected to my rectum, but not connecting to anything above it. (I'm not sure why they left that piece of colon in there, since my body can't 'use' it for any purpose and it means I could conceivably get Crohn's in that one remaining piece.)

You said your ileum is gone, as is most of your jejunum? Yet you don't have a compromised immune system? That's interesting. Everything I've read/been told, that's the danger in losing your small bowel, because it's responsible for so much of immune system function. (It's also why nearly all meds don't work for me unless they are given intravenously or sublingually. Apparently most meds, and all the ones I take, are normally absorbed by the small intestine.)

My sister is hanging in there still. It's basically just a matter of time (she's having more frequent grand mal seizures now, even though they keep upping her anti-seizure meds), but she's still hanging in there. It hurts to see or talk to her though. There's been so much damage to her brain from the repeat surgeries and chemo/radiation that her "personality" is mostly gone. It's like seeing a shadow of who my sister used to be. It's just so sad to see her this way :(

I'm going to forward your email to my GI doc. See what he thinks.

By cheneyfox
Posted November 2, 2009 at 10:25 am
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I have and I had surgery for the same thing. I was told I wouldn't survive but it turned out not to be such a big deal. One of the easiest operations I ever had! I think I would get a second opinion. The only reason the surgeon agreed to my surgery was because I had a mass on my ovary.. Woeful I am missing almost all my intestines, and I am on TPN and I am actually healthier than I am when I am NOT on TPN.. Get another opinion.... Oh yea.. I should add that I have had several operations while on TPN throughout my life time.

CC

By Woeful
Posted November 2, 2009 at 6:07 pm
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Cheney,

I've had 7 different opinions, lol. No more. I give up. They're all just giving me headaches. But all agree that I'm too high risk for any kind of real surgery because there are too many unknowns. It apparently comes down to the blood clot that I sprung last year (and that then broke into several other pieces). I'm on coumadin, which I'd have to come off of for 5 days (taking Lovenox instead) before surgery, then no blood thinner at all the day of surgery. That is their main concern (they still have no idea why I threw the clots in the first place, nor why two of then wouldn't dissolve). Then there's the issue of them not knowing why suddenly my skin doesn't want to 'knit' back together after it's cut open.

I guess my luck just ran out surgery-wise. I averaged bowel resections every 2 to 2.5 years since 1997 with nary a complication (I'd be back to work or off traveling again within 6 weeks). But then 3 surgeries ago the incision came apart 2 nights after I got home from the hospital (woke up to a belly full of blood and half my staples just dangling). I think that was the result of not 100% sterile technique on the part of one of the third-year residents, but then again, hospitals are the easiest place to get infections, so who knows. So they had to open me up and send me home to heal by secondary intention (or whatever it's called--where they don't sew you back together but simply pack the big gaping opening with dressing). The surgery after that went fine, no complications. Then the one after that, I again developed complications. Then last year's big meltdown. And I still wonder if being on Remicade or Humira had anything to do with that (that's my thinking). I was on Remicade 1.5 years and Humira a year. Funny that all my post-surgical complications developed after I went on those two particular drugs. Oh well, guess I'll never know. And as for last year, I still really think the second hospital I was in made a major medical error. I think they ignored or overlooked symptoms. (I come in by ambulance in severe pain, with a 20+ year history of obstructive Crohn's, suspicion of a thrombus the week before. I vomited blood 5 different times and had bloody diarrhea at least 3 times, something that had NEVER happened to me before. Told the nurse and she's like, the doctor will be with you in a few hours because two patients are ahead of you. I think the bloody vomit/diarrhea was because a clot had lodged in my superior mesenteric artery and my bowel was already starting to die. I have zero memories of my 3-day stay at that 2nd hospital. I just know by the the time I was transferred to my regular hospital, I was critical, nearly dead. And I just haven't had the energy to deal with it, nor the money to pay for copies of all my records from that particular hospital stay. But in my heart, I really think an error was made at at that 2nd hospital. That they overlooked something they shouldn't have.

By cheneyfox
Posted November 2, 2009 at 6:36 pm
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Woeful,

For the record if anyone has had significant abd surgery it is a risk to have more. They told me and my family that I would die from my hysterectomy in 2008. The doctor called me several times, we had to sit down with my family.. etc. They always worry that with so many abd surgeries that they can't tell what's intestines and what's not. You know?? But since the mass was unidentifiable and I it could have been cancer and because I was getting infections from ascites (fluid from ovulation that could not reabsorb, etc) it was determined that I needed the surgery, regardless.

Know what happened?? I walked out of the hospital 4 DAYS LATER! One of the surgeons told me I was "amazing". But it wasn't me. The bottom line is NO one can tell you what to do but I can share my experience and if it helps someone else it was worth it. You have to decide what is best for you. But I definitely think you should get a second opinion.

I think the quality of my life is way more important than how long I live. As hard as that surgery was on my family and friends, I needed to have it. I pray that you find some direction and I pray that you find peace with your decision...

CC

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