Trouble after surgery #2 of 3

If you've tried the usual stuff like Imodium, lomotil, and opiates (which I Imagine you have), you might ask about Sandostatin. It in an injectible synthetic hormone that is effctive for diarrhea. A number of members here have found good relief with it for high output ostomies.

Jan

I don't know what else to do. Just wanted you to know I know how you feel. I had your surgeries 1 & 2 in one surgery and had super dehydration and overflowing bag problems too. Projectile vomiting and my entire body in a giant charlie horse.

They had me order the pizza off the menu and they automatically added gatorade to my 3 meals a day. I was told to order a lot of different things but to just take a few bites of each. I remember the head resident lifting the plate cover, after I'd finished breakfast one morning, and shaking her head in approval. She's the one that told me to do that. I don't know why. As I look back I think maybe some of that food could have added to me getting sick.

I found a scale as I wondered how much weight I lost by dumping my colon, it had to weigh something. I weighed daily and was going up and down. I lost 15 pounds in one day when I got super dehydrated.

So hang in there and eventually your body will figure it all out. The rear discharge is ok. I was glad to see I could "hold" it and didn't have to rush to the bathroom. It's the little things to watch to see improvement bit by bit.

Thank you for the responses! It truly means a lot to have this community.

As an update, blood has now begun pouring out of my ostomy bag too. They did another abdominal X-ray this morning and are doing frequent blood tests to make sure my counts are staying up. I had a consult with another GI doctor to discuss whether the blood could be coming from the stomach; doctor felt that was unlikely. Frustrating because no one seems to have answers. They just took me back to do a CT scan (with the contrast fluids taken by mouth, some intravenously, and some up into my Jpouch. Hopefully the results will provide answers.

Anyone have a Jpouch that didn't fully heal and continued bleeding weeks after surgery?
Anyone have severe cramping in their lower gut following Jpouch creation?
Anyone have adhesions that caused partial blockages?

With regard to the high ostomy output, doctor has not suggested any slowing agents (Imodium, etc.) up to this point, so I haven't taken anything to help with it. However, doctor says I will likely leave hospital with IV to administer regularly at home (because dehydration with my high output ostomy seems inevitable). Doctor also suggests that we may bump up the Takedown surgery to a sooner date (next couple weeks), once they verify the Jpouch is fully healed [though things aren't looking good with all the blood coming out].

Any further advice/encouragement would be much appreciated!

Gee, all this bleeding seems like the primary issue now. If it is all old blood that is breaking down and finally gushing out your blood counts will remain the same. If it is fresh bleeding, your counts will drop. If you have a bleeder in there, you may have to return to surgery. It may be possible it is within the bowel wall or stomach, and if so, it could be dealt with via endoscopy. But, the fact you have had issues with internal bleeding already, this is all too suspicious...

Hope it turns out to be old news, old blood, and nothing much to worry about.

Jan

This sounds like me after my 2 surgery. I had internal bleeding as well, icu for a week and another in recovery. I came home with my drain, to drain blood and fluid from my stomach and became dehydrated, malnourished, blood from butt, and soon into my bag... About a week and half home and I was taken back to the hospital fir about 20 more days. I don't even remember much of it, I was throwing up and basically was sedated the entire time. Tubes everywhere!

Eventually, stomach swelling went down, etc... I was released but still very weak, tired, in pain, and my output from the loop ileostomy was always liquid. Eventually it all subsided, except the output. Dr said the blood was old blood as well. And 3 months later I was just above the strong enough mark to have the takedown.... And it all happened again! I was miserable.

Heidi

Hi. I'm so sorry you're having a rough go. The same thing happened to me- high output with the loop ileo. I had to have a PICC line placed for TPN and IVs. I had it for about a month plus while getting strong enough for the third surgery.

I don't understand why blood is coming out of your stoma. It does not sound normal to me. I don't know why they are talking about sending you home from the hospital with this and everything else going on. I've never heard of doing all of this at home anyway. Sorry, I'm not a medical professional but this sounds like more than a dehydration problem to me.

Please let us know how you are doing.

Thank you all for the suggestions/feedback!

As an update, based on the CT scan results, the doctors resolved that I had enteritis (inflammation of the small intestine), which was the reason for the bleeding and severe cramping. They put me on antibiotics (Fladgyl and Cipro), and the bleeding stopped within hours and the severity of the cramping lightened tremendously. They also put me on Lomotil (anti-diarrea), which has drastically slowed my output from my stoma the past few days. I was finally released from the hospital today after this 6 day stay (and hope not to see the hospital again for awhile!). They did not send me home with an IV (as previously planned) because the Lomotil has been so successful at slowing my output and providing time for my body to absorb fluids...

Has anyone else on the site had enteritis? I'm still unsure of what caused it (and whether to be concerned about it returning).

Thanks again for the feedback!

I suspect it was a bug you caught from being in the hospital (it is called a nosocomial infection- hospital acquired). So, the very best thing is to be AWAY from the source. You'd think that hospitals would be the cleanest places in the world, but it is just the opposite! All it takes is one person not washing hands adequately... Hope this is not C. difficile, as that can be difficult to get rid of (because it is a spore forming bacteria). It is suspicious, since it causes bleeding similar to colitis.

Jan

I'm glad you are doing better and are at home. Maybe now you can get some rest!

I hope they test your output a few weeks after your course of antibiotics. I've had too much experience with c-diff and Jan mentioned it. You have to wait that long after taking antibiotics to test.

I'm glad you are home and on the mend

Jan, I fell really stupid, I thought c-diff was only in the colon and/or j-pouch. Hello the j-pouch is made out of the small intestine. So could part of my continuing all the time pain be a simmering c-diff in my small intestines that gets worse every once in a while?

Yes, or it could be reactivating, laying dormant until your resistance is low. But, don't feel stupid, most doctors "knew" that you could not get C. diff in the small bowel, so removal of the colon would cure it. But, alas, they were wrong and numerous cases of small bowel C. diff were later documented.

Jan