Living with Adhesions

From: IAS Admin (
Sat Oct 9 20:35:24 2010

From: [] On Behalf Of Rebecca Tucker Sent: Wednesday, September 29, 2010 11:11 PM To: Subject: Living with Adhesions

It so breaks my heart to read the stories and no first hand what it really means when one says they want to give up when the pain's really bad. Been there, done that. I don't know how our families live through it either.   No one should ever have to know the intimate workings of their digestive systems like we do, but I've got to say folks, you've GOT TO GET A HANDLE ON YOUR BODY!!! I've found that if I'm paying attention, I can jump on the problem quickly and save myself a ton of grief. I've been dealing with adhesion disorder since 1981. I've been near death more times than I can count. I still have a port-a-cath and have used it for TPN in the past....less and less all the time. I've learned that some foods are much more difficult to digest than others. I don't eat beef any more unless it's pureed like baby food. I have to stay away from fiber since I also have gastroparesis. (The adhesions have interfered with the nerve stimulation to the intestine so they don't squeeze (have parastalsis) like they're supposed to. It also effects  my stomach. So, I take prevacid to keep the stomach emptying.   I take miralax daily and sometimes twice daily. As soon as I see the stools becoming thin shaped like a pencil, I know I'm becoming obstructed. I have adhesions inside the intestine as well. So, I start doing tap water enemas as soon as I see that happening. I bought a stethascope and I listed for bowel sounds on a regular basis. If they're there, I cautiously eat. If they're not there and I can hold down liquids, I go on clear liquids for several days. At times, I can't hold anything down and I go on IVs. for those of you who live in the US, this can be done at home with Home Health. You can learn how to do it yourselves. I prefer the port-a-cath, but PICC lines and peripheral IVs work at home too. I worked full time for years with a port-a-cath and on TPN. I even did IV medications at work. It just depends on you.   But most attention to your own bodies. You are your own advocate. Your doctors work for are their employer and they are your employees. If they don't do their jobs, fire them. Get someone else. Talk to your friends on this list and find doctors who can help. I hated being on pain medications, but sometimes you have to. But, the closer you can keep an eye on starting to develop a problem, the quicker you can thwart it from escalating to severe.   Start palpating (feeling) your own abdomen. Adhesions are often specific to certain areas. Once you've become familiar with your own gut, you will begin to recognize areas that are commonly more problematic. You can even message your own abdomen to promote motility. Even if you notice a small pain, stop eating solids and switch to liquids. Don't hesitate to use ensure or boost if you can afford it.    Start being an equal member on your medical team. Advocate for yourself!!!! It's imperative to your survival!!!! RebaT

Enter keywords:
Returns per screen: Require all keywords: