Re: Severe GI BleedsBy: Emily H (10:08 AM 11/22/2010)
Renee, when I read your post this morning it broke my heart! Perhaps because Patrick and Aaron share a nurse... or because they are both adopted... I've always felt a certain attachment to him and I hate to hear that he's struggling so much with this.
I don't have any personal experience with this... But I do have a few thoughts and would like to refer you to another support group I participate in that has some members who've faced similar problems.
The very first thing that came to mind today was that excessive bleeding can happen with TPN associated liver failure. Patrick's transplant team was adamant when we started with them that we eliminate any unnecessary stoma because of the risks that portal hypertension could cause him to bleed out from those sites as his liver got worse. How is Aaron's liver? Have the docs been watching his PT/INR? I've seen the PCMC docs work miracles in helping with liver problems.. perhaps looking at the liver might help you slow the bleeding enough for the ulcers to heal.
Second, I know that Patrick's liver problems have led to spleen problems and that he bleeds more whenever he is fighting an infection. This applies not just to line infections, though those hit him hardest, but also to viruses and sometimes to bacterial overgrowth. He'll bleed profusely from the tiniest holes.
I went out and did some research this morning in the support groups I participate in and found a thread in the Yahoo! Short Bowel Syndrome support group from a parent describing a similar problem.. history of bacterial overgrowth, ulcers where the STEP was done, and a resulting GI bleed. The gist of the conversation was that it seems that flagyl and bacterial overgrowth created the problem, and that the result was ulcers that bled.
They tried a lot of things, clamping, antibiotics, high fiber diet... The posts stop before they found a resolution, so I don't know how things came out, but I thought that the thread might be helpful to you, as would connecting with the parent who started the thread, if possible.
So, here is a link to the thread.
Our message board doesn't support hyperlinks, so you'll need to copy and paste this link into your browser. You'll need to become a member of the group to view the thread, and I think that may take moderator approval. However, being able to talk to another parent facing these problems I think would probably help a lot, so it's probably worth a try.
Finally, I am one of the very biggest fans of the PCMC GI clinic. I think the doctors there are among the most caring, qualified, and capable doctors I've ever met and I completely trust Patrick in their hands. However, there have been advantages to Patrick also having a transplant team behind him who have treated more patients with severe intestinal failure. They've seen a lot more patients facing the effects of long-term short gut syndrome, intestinal failure, and liver failure. That experience has taught them things.
We have been SO impressed with the way that Seattle Children's has allowed Primary Children's to be Patrick's primary hospital and care team, but still have been there to provide the extra support and help and experience. It's a unique and wonderful opportunity they've given us.
If you start to feel like you just need other brains brainstorming on this problem, you might consider taking Aaron for an evaluation there. I know it's scary and complicated and logistically very, very hard.. But it's more doable than it seems. I don't usually plug doctors or programs or treatments here on the board.. but the partnership we've seen with PCMC and Seattle Children's is unique in the country and might be worth looking into for Aaron.
Best of luck! Keep us posted! And, if you ever need to talk, I'm here! My experiences may be different, but I know what it's like to feel helpless and afraid and like you have the only child with a certain set of complications.