Intro to Jenn & GP: Part II
I've Moved!
I've transported every little bit of this blog into a user-friendly, highly informational Wordpress blog! All the information, posts, discussions--literally EVERYTHING--have made it safely into a newer, more easily navigable site, with more information and frequent updates. PLEASE check it out!
Click here to go to this post on the brand new site!
Labels: Blogger cache
posted by Jenn Wright | Wednesday, February 22, 2006
2 Comments:
Jenn, thank you so much for taking the time to write about your illness. My situation while different is oddly similar. Started out with an ulcer blocking the opening into the bowel. But was misdiagnosed for several months due to being a recovering anorexic. We tried everything, but could not heal the ulcers. I had surgery to basically "re-route" the bowel through a new hole in my stomach. Within a couple of months I knoew the problem was back. So they went in and removed the lower two-thirds of me stomach. This was to get rid of the part that produces acid. What they didn't tell me before I had this surgery (I would have seriously reconsidered) was that they were going to cut the Vagus nerves. These are the nervers that surround the stomach and what basically make it work. So what I am left with is a stomach that doesn't work, a lot of nausea, a lot of pain and now when my stomach gets too full I just have to wait it out. Sometimes it can take up to 2 (plus) days for it to empty again. Oh, did I mention that without the Vagus nerves you can no longer vomit? Sometimes it feels like a cruel joke. After the year I spent vomitting every day or two I never thought I would WANT to do it again. Now I am living off of saltines and all I get from the doctors is that this is as good as it will get. I have actually inquired about a feeding tube and they look at me as though I'm green with purple horn!
One doctor did suggest the Gastric Stimulator. But no one seems to know where to go from here. And of course none of them want to commit to any answers. I would love more input on how you feel about yours and if you feel it was worth it. Thanks for taking the time to write your story and for staying positive.
Beth, from Missouri
Dear Beth,
I apologize for the delay in my response. I've been on vacation for a week, and just returned early this afternoon.
Thanks for your comment. I am so sorry for what you're having to endure. It is absolute misery--and the post-vagotomy inability to vomit compounds the issue significantly. It does sound like we have a lot of similarities--the ulcer, the delay in diagnosis due to an unfortunate history, and GP. I am astounded that your docs didn't prepare you for the possibility of GP (post-surgical GP, particularly with a vagotomy, is not uncommon) or the SIGNIFICANT drawback of not being able to vomit. Horrendous is all I can say.
The good news is that because what remains of your stomach probably has its own normal function intact, and is just lacking the electrical-nervous connection normally provided by the vagus nerve, you might be a good candidate for the gastric neurostimulator. Obviously, since it wasn't successful for me, I am not an advertiser for it or anything, but knowing that the problem was kicked-off by cutting out your electrical circuitry, a little external electrical stimulation may be the key.
As for feeding tubes, I would press the issue. I know what's it's like to ask for something and have the docs look at you like you're nuts--I had to fight for my j-tube as well. But the months that I had the tube feeding were the best in terms of feeling "normal." Even though I'm back on TPN now, I remember quite clearly how wonderful it felt to get ALL the calories I needed without the pain, nausea, vomiting, etc., that accompanies oral intake. I don't know why doctors are so hesitant to place feeding tubes--they are SO useful, easy to care for, low incidence of infections or complications, and they can build a body up in no time. Again, I would press the issue with them, find out what their reservations are, and if they're dead set against it, move on to a more compassionate and team-playing MD. It's hard, I know, but sometimes doctors get their prejudiced hackles up and can't see beyond what they THINK is the problem. (If you're curious about my experience with my bullheaded GI doc, I've written a pretty detailed account [my "new" blog is at jennwright.wordpress.com] called "Vindication"). Anyway, there's not much they could say that would be more miserable than your physical condition, is there?
A couple of questions: who is your GI doc? Have you heard of Dr. Abell? He's down in Mississippi (I think) and he invented the stimulator. My GI doc had actually contacted him about me going down there for him to fiddle with my stimulator, but then the rest of my GI tract went out, so it became a moot point. Anyway, you might look him up--he's bound to have a few more ideas up his sleeve.
How old are you? That's another key factor in all this--you sound young, which is in your favor!
How long were you anorexic? How long ago was it? (If you don't want to answer those, I understand!) That seems to be another key factor in how doctors approach me... even though it's been over ten years, they still consider it to be a problem!
As for whether I think it was worth trying, definitely yes. Though it didn't work for me, I know of a LOT of success stories, and it was worth having the hope for a little while. Also, if I hadn't tried it, I'd still be wondering if "normal" weren't still attainable for me. No doc can promise anything with the stimulator--it's just not possible--but I'm sure someone will be more committal than "this is as good as it gets." There ARE other ways, and you deserve to have them offered to you from a quality of life standpoint.
I hope this helped a bit. There's a lot more info on my new blog--questions, answers, diagrams, more of my history and my current status. If you have time and are interested, you might find some more input there to help out. Or feel free to email me--I'm always happy to converse personally.
Please let me know if there's anything else I can do to help--advocate, scout for MDs, encourage, answer questions, whatever. I know there is a more comfortable life available, and I'd love to see you get as much of it as you can!
Thanks again for your comment. Take care,
Jenn
Post a Comment
<< Home