BIOPSY AND HOSPITAL UPDATE!!!

Well hello everyone!! I am STILL in the hospital.......day 12 now. The surgery to remove my remnant stomach off the abdominal wall went very well! They removed the stomach off the abdominal wall, removed some scar tissue and adhesions, and found a bit of inflammation in there, which I'm being given an anti-inflammatory via my PICC line for. As for the pouch and the issues I'm having with not being able to drink OR eat without pain medication for it. Everything that I put in there, including water, is very painful. Before I came in the hospital, on Sept. 26th I weighed 339. When I wasadnitted, I was 334. Lost 15 pounds in 5 days as I was not able to eat or drink anything because pain management told me that the only pain control that they were going to give me was the Fentanyl patch or nothin! WOW........sounds like an ultimatum to me and not pain management. So I told my surgeon about it all and he admitted me. He wanted to get to the bottom of this. During the surgery to take my remnant stomach off my abdominal wall, he went looking around in there. He found something that he, AGAIN, had never seen before. On the part of the bowel that leads out of the pouch, there was this white patchy fibrous stuff all over my bowel!! I'll post pictures of it when I get home. Well, when I first saw the pictures, I said, oh..........well that looks like endometriosis. My Dr. isn't isn't quite convinced. He started immediately treating it with an antifungal til the biopsy results come in. Well they came in on Wednesday. All's the report said was fibrosis. SO then I'm screaming on the inside, "Fibrosis from what???" So obviously my surgeon and I have more to talk about later. If these spots DO turn out to be endometriosis, the one surgeon said I'm in trouble because they would have to go in there and resect that piece of bowel that's about 8-9 inches........something like that. So we talked yesterday and he decided to put me on the largest dose of Lortab that he could, without killing my liver...........even though I'm allergic to Lortab. Now I only itch with it, but I itch BAD, but he agrees to have Benadryl on stand by. So I'm willing to try it because if the Lortab works and I'm not itching too bad, I could go home taking that. So I took it at noon. About 12:30 the itching starts in. By 12:45 I'm calling for the Benadryl. My nurse was going to give me a pill but because of the reaction I was having, she gave it to me IV. Then I was out for about the next 2 hours! SO OK, that's not going to work. Another thing he talked about was sending me to skilled nursing. My surgeon has decided to get a triplicate prescription pad just for me so he can write my scripts for me since they are narcotics. The problem is that they may take 3 weeks to a month because they have to be processed down in Austin and all that good jazz. So I either sit here for that long, he sends me to skilled nursing maybe closer to my home, or I stay here until we find out how to fix this pouch/bowel issue. We're pretty sure that whatever is on that bowel is what is causing the problems and the pain. We just need to figure out WHY. Fibrosis can be caused by a few things...........a few of them not so pretty according to my research. I KNOW we're going to get to the bottom of it. We absolutely have to! And I'm willing to do what it takes to do so! I definitely need everyone's prayers more than ever right now. I'm scared about this bowel issue, but at the same time, I'm glad we found it! Now we can get to consulting with other doctors and or surgeons to see if they've ever seen it and what we can possibly do about it. I don't know how much longer I'll be here, but all of your calls and emails have been very VERY appreciated and MUCH NEEDED, especially since I've only had my family be able to come visit me ONCE since I've been here!! I still have the same room phone number, 214-818-7107. Please feel free to call anytime between 8am and 11pm central time. Thanks again for everything you all have done for me and all the support you've shown me. Like I said before, I'd be lost without it! Allie

Allie prayers and hugs sending your way!!!! I pray they find and fix this long struggle!!! dee

Thank you Dee!! I hope they do as well. I'm ready to go back to living a normal life!! Allie

Hi Allie, I hope this is a light at the end of the tunnel for you, I really do. I admire you so much and am so proud of you, I don't think I could have handled this with your grace and humor. lots of love, Inky

Oh Inky!!! You are absolutely so sweet and caring to me!!! I don't know what I would do without people like you to keep encouraging me. Maybe that's why I've HAD so much grace and humor because you guys help keep my spirits up when I'm about to lose it!! And I'm PROUD to know people like you and have people like you in my life to help lift me up when I'm feeling down..........and that's a pretty hard task because I'm HEAVY!!! Love ya! Allie

Oh Allie, what a saga this has been! I'm so glad that your surgeon is being proactive and really trying to get to the bottom of this. At least you have a new medical research topic to pass the time while you're in there, LOL...I can only imagine how frustrated you must feel-I think of you often and am sending you good vibes right this minute. Thanks so much for keeping us posted. Take care, Lisa

Thanks Lisa!! Yeah and what's funny is that I've actually been researching it too!!! There's just not a whole lot out there on it. It's like what my surgeon said.......he's never seen it before! It's very weird. But my surgeon has been great and really trying to explore every avenue. Allie

You ain't heavy - you're our sister. Ok, so that was lame, but I've gotten to feeling like we're family of a sorts on the A-team. I am glad they found out what your problems are, and pray that you all can figure out what to do about it. Wisdom and knowledge from your doctors, courage and healing for you. Marcia

LOL Marcia!!! I'm your heavy sister then. lol No I feel the same way about it. The board is sometimes like a big ole family. I just pray that they can FIX the problem!! I'm SOOOOOO ready to be home with my family and be normal!!! Allie

Hi Allie! I know this has been mentioned in the past, but your trials and tribulations are definately for not! These "strange" reactions are paving the way for better care for others in the future. It sucks that you have to endure all that you have. But I truly believe that god only gives us that which we can handle. You are a catalist for change within the healthcare community and we are soooo very proud to see such strength within you! Take good care of yourself and keep us posted on your progress, k? Love of love and support your way...... Dawn