9/16/08

Well the iron infusions this morning went okay. For some reason I'm more pale now than I had been weird. I took a nap when I got home because they pump you full of benadryl and steroids before the iron so that you do not react to it. Plus I overslept and didnt get up til 15 mins before I had to be there. Crazy. They started an IV when I got there and started just fluids til the hospital sent over my prescription do 30 mins benadryl/steroids 30 minutes of continuous iron and then they do regular fluids again for 1 hour after to make sure I don't have a reaction to the iron.

My next appointments will be some shorter though because since I am fine and not reacting I shouldn't need to wait an hour again. They said number 1 is the longest. I came home and took a nap though I was so tired and didn't sleep much at all.

My next infusion is next Tuesday and then my oral surgery is a couple hours after that. Fun stuff, NOT.

I woke up from a nap after the infusions and feeling sooooo sore and achy. Flu like achy so I called to find out if this was normal and was told some people have this side effect! So much for the immediate relief from the fatigue everyone one talks about lol. I've barely wanted to get out of bed much less move.

Now it's  almost 8 a.m. Wednesday morning and I'd like to say I feel better but truthfully I feel just as bad. It's wore off some but I've hardly been able to rest because I ache so bad. I have a high pain tolerance too. Atleast with my surgeries the pain was centered around incisions or mostly in the same spots. This is just achy. :( I am whiney and moody anyways and I just want to cry. I've taking meds with no results. I'm already so depressed that I cry over everything anyways (I do have a therapist appointment today) and I'm just blah. I can see today will probably be a crying session. I made it through my first without doing so but I can't even think about anything without crying.

The steroids helped in some aspect though, it made me have an appetite yesterday I actually got 4 small couple ounce meals in (2 were solid) and while I heaved and felt nauseated I actually kept them down without medication. I think it's because I only tried a little bit though. I just pray I don't gain weight with it. I'm struggling so bad with that right now my body doesn't want to lose because I can't eat enough and it's actually started gaining. :( Thankfully it seems like it's on the down slide again I think even though I've not weighed since last night.

I'm just soo exhausted. Sorry for being soo down but this is just exhausting and miserable.

Dr C went in yesterday and sectioned off my afferent limb so food can no longer get in there. Right now I feel like I've been run over by a mack truck. I'm sore and hurting, I am very very swollen that I look pregnant. I have a large hematoma round my belly button incisions probally the size of a softball.

Oh well it's going to be worth it to not have those horrible pains again.

She also had to clean up a LOT of adhesions.

I drew in PSP a diagram like my surgeon drew for me and labeled it.. I cann't draw on there so it's hard but heres something like she mentioned.



Okay basically the part I have completely sectioned off is the Afferent limb. This is where the food is going and it's not supposed to go.. The opening i drew between pouch/intestine is where the pouch should be sending the food but its goin sideways instead... the lines going up and down is just signaling how the food moves when it moves out of the afferent limb..

Well I had my 12 month appointment with Dr C today.

Things went pretty well.. My labs weren't too bad although my anemia is getting worse and my iron levels are low. She told me to find a hematologist near by and call up there and she will refer me. I got my T SHIRT!! YAAAY

The nut & I worked things out to change my eating schedule up to see if I can get more calories in and keep my blood sugars and all level since they seem to be dropping. She said I'm doing really well exercise wise and I'm doing okay with my protein.

Dr C. seems to think that my problem with the bloating and pain is that some how food is getting into my Afferent limb, where food isn't supposed to go.. I don't really know how to describe it but anyways it can cause the horrible bloating and pain. It gets out of it with the heaving, sometimes it comes back up others it gets itself over into my intestine where it should be, which explains how I feel better without meds or anything sometimes. Sooo anyways the way to fix this is to have surgery again. She is going to go in laproscopically and section off the part of my stomach or what not that its going into sooo that its not going in there anymore. I can't remember if she said she is going to remove that part or what right off.. She drew a lil pic to show me what she was saying. Also said shes going to look around in there at everything else to make sure thats the problem and something else isn't happening. ...

So I guess I should update!

I'm 11 months out now. Things seem to be going better. I have some good and bad days still but nothing like before. I haven't even had to get my Phenergan or Zofran refilled in a couple months. Definitely improvement. :) I'm pretty happy most the time now. :)

I've had a couple bouts with sharp pains. The first time I went to the local ER and the ER doc said he thought it could be my bowel kinking and unkinking but he diagnosed me with intestinal spasms and started me on Bentyl and restarted me on the Reglan. Bentyl didn't work so my PCP who I followed up with switched me to Nulev sublinguals. They work some but when the pain is really bad they don't touch it. I have my appointment with Dr. C on Aug 15 for my 12 month post op appointment  (couple weeks late) and I'll bring it up with her in person instead of placing phone calls over and over again.

As far as my liver biopsy results  The news was pretty good. Right now I will have to be monitored every 6 months with liver function tests. The diagnosis is NAFLD (Non-alcoholic fatty liver disease), my liver is still enlarged and also stage/grade 1 scarring on my liver, which he said is something that we will have to keep an eye on. There are 4 stages of scarring, the most serious (stage 4 is Cirrohsis). He said that chances are I shouldn't have any real symptoms or issues for atleast the next 5-10 years. If my enzymes start going up again or I start having abnormal liver function tests again (they are back in normal range right now) before my labs are done in 6 months I'm supposed to call them immediately. Basically it's a wait and see process and theres no way to treat it until it progresses. It's good news overall though!! I'm so happy its been caught early since liver disease (alcoholic and non alcoholic) run in my family. Thats pretty much the run down of it.

Life is good. The weight loss has slowed tremendously but it's still coming off soo it's good.

I will be getting my dental issues taken care of on Aug 11 too. :) That is going to make such a difference that I'm sooo stinking excited. I will be in pain at first but it's all good.

So I had my 9 month appointment with Dr. Cacucci on Monday. Things went well. I had gained a couple lbs of water weight because its that time of the month and soo I wasn't quite at the 100 lb mark on their scale (even though I've hit it lol). It frustrated me but it's okay. Dr. C said she was sooo happy with my progress and to stop worrying about not losing fast enough. She basically said I can't compare myself to normal people who haven't had TPN and fluids often and stuff like that and so I need to just realize I'm not the typical case. The great news is I got my G-tube out!! The dietitian wasn't wanting it out because I'm still not able to eat enough BUT Dr. C said since things HAVE improved some she wanted to know what I wanted. Of course I said yank it because I am doing better although I'm nowhere near where I should be but theres improvement and I desperately wanna be able to sit in the bath tub and rest and be able to swim this summer. It was a really good appointment mostly. I was worried it wouldn't get pulled but thankful that she did pull it. The dietitian is recommending that I take my B1 daily since I do vomit often still until it is better.

The hole where my G-tube was is closing up slowly and it's weird looking but it's not draining anymore which is a shock for me lol. :) It's doing good though.

Tuesday morning I had to be at IU for my liver biopsy. Overall it went well. It's hurting still and very sore in that area. I checked in and all the staff was absolutely wonderful! Because I was dehydrated it took 3 sticks to get my IV started soo I'm all bruised up. We waited til the room was ready and all and they took me over to the ultrasound room where a nurse came in and chatted with me and explained how things worked. Since I am Asthmatic they decided NOT to full sedate me and just gave me a small amount of Verset they said it should make me not care. I don't know if it is because I have had so many scopes and stuff that my body is somewhat used to it or whatever but it didn't affect me at all. I carried on a normal conversation with them the whole time it was happening and felt mostly everything (even with some local anesthetic) and knew what was happening the whole time. They ended up taking 3 samples. The gave me some Fentynal because I was having a lot of pain almost immediately after and that helped take the edge off. Shortly after they gave me a pill for pain because the pain was increasing again. I laid flat for the 4 hours (except about 90 mins after needing to use the bathroom and no matter how hard I tried to use the bedpan it wasn't working soo they got permission for me to get up and use the bathroom, although they were fixing to cath me but the doc okayed me to get up) after and they let me go. Since I was allowed to resume normal activity except for lifting and anything strenuous and so we went and walked around circle center mall and met with DH's cousin for lunch. I seriously think I overdid it big time.

Last night was horrible pain wise, I was taking Tylenol every 2 hours and I ended up taking 2 aleve (I got permission to do this from Dr C a couple weeks ago when I dislocated my elbow as long as I take Pepcid first and eat with it). I felt like I had my RNY all over again. I didn't get much rest and so I've rested most the day today. Overall the pain is better because it's not constant but if I move a lot or cough or anything like that I definitely feel it. I'm guessing it should be gone tomorrow hopefully. I do have some swelling and it started bleeding a few times yesterday after I left the hospital but it's not bled today. It's mostly just really bruised and based on the bruising on the outside I'm better the liver itself is probally a lil bruised LOL. I go on May 5 for my follow up with the liver specialist to get my results for my biopsy.

Anyways thats pretty much what has been happening with me. :) I hope everyone is doing well. I'm very excited to be tube less and not have an attachment for the first time since surgery lol.

Soo yesterday was my 6 month post op surgiversary! It's been a long, stressful, queasy road so far. The nausea is doing a little better most days. Some days are still just plum awful though. I'm fluctuating 87-92 lbs down lately. It's really beginning to annoy the crap out of me truthfully. I just want the weight to keep coming off and it's soo slow.  I've still averaged a little over 10 lbs a month though so not too bad. Lately I've not made the best food choices so truthfully I'm not THAT surprised. With moving we kind of ate out a lil more than I'd liked but who feels like cooking after moving all day. I couldn't eat much of what we ate and some of it taught me my lesson making me very queasy but I still tried a lot more this past week than I would have before. Since starting my prescription of Iron (Repliva 21/7) I'm having to take laxatives constantly. I HATE doing that but man my stomach is a mess since taking it. It also makes me feel a lil queasy so I've gotten into the habit of taking it at bedtime.

I still have my g-tube. Never would I have thought I'd even have one muchless still have one at 6 months post op. It's been a blessing and a life saver sometimes but lately it's been more of a pain in the gut, literally. I've had it repositioned/restitched 4 times in the past 2 weeks including 2 ER trips. I busted my most recent stitch sometime tues-wednesday, but so far this new tube is staying put so I feel a little better.

The roads been long and I'm still not quite as far as I'd like to be. I am over half way to where I want to be weight wise and only 60 lbs from goal. With moving I've not made it to the gym as often as I wanted but starting next week I'm going back full force. I'm not going as far as doing the pouch test yet but I'm going back to protein only and then if I have any room I will do a veggie or something. I should be at 5 oz meals now. Right now I still only do
2 - 3 oz some meals and other meals I do good to get 1 oz and on a rare occasion I can get 4 but it's usually soft foods or slider foods I guess that allow that. Im going back to the basics again though of protein, exercise, water. I know I'm not doing THAT bad because I'm staying under my minimum calories still even though I'm trying to get to that point but I feel just plum awful eating soooo much. Oh Well.. Umm I'm only tube feeding on the days that are really bad but I'm thinking at bedtime I may tube feed to try and get rid of some of these cases of Glytrol PLUS it gives me the extra calories I need and a little bit of protein. I am obsessed with the scale and it's frustrating. I try soo hard to stay off it but it's tough.

My diabetes is gone, I was on 4 meds preop including two type of insulin. My asthma has made some slight improvements, but not much BUT some is better than none and I'm not in the hospital monthly for it which is good. Of course it's winter and the allergens aren't as bad right now but I'm hoping that the weight loss will have a good affect on my lungs!

Overall I feel blessed. Most the time I feel healthier and things are improving and that helps me feel so much better. It's been a hard long road thus far but I'm looking forward to the much longer road that I never would have had at the rate I was gaining weight, that road would have been cut short, therefore  I can say most days I'm sooo glad I did this. Anyways theres my update lol I know it's a book..sorry

My stitch broke that was holding my gtube yesterday. Now my tube is usually long enough to hang out the bottom of my shirts...I'm guessing it's usually out maybe 10-12 inches
This morning I woke up to this (and the gauze isn't even 1/4 in thick lol)


Soo I went and my PCP restitched it in for me but he didn't pull it out except maybe 3-4 inches soo im concerned that its in my Duodenum again because it's in as far as it was Saturday when I was doubled over and it's hurting kinda bad today but ooo well..

I had my "6" month appointment on Friday 1/18. Well I'm down 84 lbs according to their scale (I had 2 layers of clothes on PLUS we had eaten breakfast like an hour before and I had drank a huge bottle of water and hadn't gone to the bathroom sooo I'm betting I had extra weight on me lol), 90 according to mine first thing in the morning and my scales usually about 3 lbs MORE than Dr. C's. I'm home and still have the G-tube... She decided NOT to pull it yet just didn't seem to think now is a good time, I asked about it because Marta told me they were pulling it and she asked if I thought I was ready, I said I'm doing better for the most part but did have some bad days still, and if she felt that it was okay that I'm all for it coming out. She did seem a lil hesitant when I asked her bout pulling it today and said she wait and leave it in til my 9 month appointment to be sure because she isn't going to put it back in and with TPN not being an option anymore she left it. She also started me on some prescription iron and we're changing my vitamins around some.  I'm doing good though overall. She said she was very happy with my progress and she said she KNOWS it sounds weird telling me to eat more to lose weight considering I've dieted half my life. Overall things are good. I was a lil bummed leaving with the G-tube since I had myself psyched bout it coming out BUT I definitely understand the reasoning. She did restitch it in again and all that fun stuff.