dancinjudge
5/19/08 Update
May 19, 2008
It's been a while since I posted, so I thought I'd give a little update on myself.
Not much new has been happening here. Just working hard. Long hours and lots of work.
My kids are doing great in school. Getting good grades and they appear to be really happy and relaxed. This is so good to see them this way after they were so scared I was going to die last holiday season.
Today I'm at 116 lbs. Up another 10 lbs. over my Feb. pics. I'm looking much better and feeling better too. I think I'm pretty much back to normal activity level, but as I start to push it I do wear out easily. So I have to be careful.
All-in-all, I'm doing great. Glad to be feeling better and not lugging around a bag of food attached to my intestines anymore. The freedom we all take for granted.
My Weight Chart:
Not much new has been happening here. Just working hard. Long hours and lots of work.
My kids are doing great in school. Getting good grades and they appear to be really happy and relaxed. This is so good to see them this way after they were so scared I was going to die last holiday season.
Today I'm at 116 lbs. Up another 10 lbs. over my Feb. pics. I'm looking much better and feeling better too. I think I'm pretty much back to normal activity level, but as I start to push it I do wear out easily. So I have to be careful.
All-in-all, I'm doing great. Glad to be feeling better and not lugging around a bag of food attached to my intestines anymore. The freedom we all take for granted.
My Weight Chart:
03/24/08 Update
Mar 24, 2008
Well, I've been off all tube feeds for 2 weeks, and I've held my weight. Didn't lose. So I got my J tube out today! It's almost like the end of the nightmare I've been living this last year. I'm almost afraid to breathe and think this may be the end of the tunnel. But I went on a 3 mile walk this weekend with my hubby. I'm back to work full time and feeling great. Now if I can just get the financial stuff figured out, I'd be so happy
3/11/08 Update
Mar 11, 2008
I saw my surgeon yesterday and he is taking me off ALL tube feeds! I was 116 lbs. in my clothes in his office, so up another 6 lbs. from last month. He wants to see me back in 2 weeks to see about taking out my tube!!! He wanted to take it out yesterday, but I reminded him what he told me last time about being off feeds for a month and see if I am stable, and then he decided 2 weeks was enough.
I'm SO excited! I can't wait to get this thing out. It's been causing me pain lately. I have a granuloma that developed and it's gotten huge and it bleeds. So he used some silver nitrate on it yesterday and now I have this blackened, charred lump that is shriveling up and will fall off. Yuck! It's still oozing. It's like it doesn't want to die. LOL!
So last night was my first night of not being on a tube feed since before my surgery last November. I can't tell you how good I slept! I was finally able to turn on my left side without fear of my tube coming undone and leaking all over the bed and me. I am sore from the silver nitrate treatment and just in general in that area, so I felt that, but I still slept really well.
I can almost see the light at the end of the tunnel. I'm back to work full time starting this week. I'm eating better without the pain on swallowing except just very occasionally. And I am learning when to stop eating to not overeat and get uncomfortable or in pain. We've actually started going out to eat again. I still bring ALOT home, but I eat enough that it seems like a "meal" to me. My acid reflux is under control with the Prilosec and doesn't bother me except very occasionally. And then I take Tums to get me through.
I cannot wait to get this hole healed up so I can take a bath and swim again. I miss that.
I would be happy to be around this weight. I actually feel flabby in the middle. I need to work out, but I can't yet. I hope I can get rid of the pudge there when I can start working out. I have suits I bought that fit in the jacket, but the skirt won't close. I have never been larger on the bottom than the top. It's weird. Oh, and I'm getting some of my boobs back. I hope they don't get huge again!
And did I share with you I got my period back? I haven't had one since June last year. So I feel like my body is adjusting and slowing coming back to normal.
Anyway, just wanted to share a positive note with you all. Thank you all for your continued support. I couldn't have done it without you all!
I'm SO excited! I can't wait to get this thing out. It's been causing me pain lately. I have a granuloma that developed and it's gotten huge and it bleeds. So he used some silver nitrate on it yesterday and now I have this blackened, charred lump that is shriveling up and will fall off. Yuck! It's still oozing. It's like it doesn't want to die. LOL!
So last night was my first night of not being on a tube feed since before my surgery last November. I can't tell you how good I slept! I was finally able to turn on my left side without fear of my tube coming undone and leaking all over the bed and me. I am sore from the silver nitrate treatment and just in general in that area, so I felt that, but I still slept really well.
I can almost see the light at the end of the tunnel. I'm back to work full time starting this week. I'm eating better without the pain on swallowing except just very occasionally. And I am learning when to stop eating to not overeat and get uncomfortable or in pain. We've actually started going out to eat again. I still bring ALOT home, but I eat enough that it seems like a "meal" to me. My acid reflux is under control with the Prilosec and doesn't bother me except very occasionally. And then I take Tums to get me through.
I cannot wait to get this hole healed up so I can take a bath and swim again. I miss that.
I would be happy to be around this weight. I actually feel flabby in the middle. I need to work out, but I can't yet. I hope I can get rid of the pudge there when I can start working out. I have suits I bought that fit in the jacket, but the skirt won't close. I have never been larger on the bottom than the top. It's weird. Oh, and I'm getting some of my boobs back. I hope they don't get huge again!
And did I share with you I got my period back? I haven't had one since June last year. So I feel like my body is adjusting and slowing coming back to normal.
Anyway, just wanted to share a positive note with you all. Thank you all for your continued support. I couldn't have done it without you all!
03/03/08 Update
Mar 03, 2008
Well, it's Monday and I went to work for the first time in nearly 5 months! Starting 1/2 days. The extreme pain and swelling I had last week has subsided, but I still ooze more than normal from the feeding tube port. I haven't been on pain pills for 2 days, and as of this morning the swelling was all gone. I took an ice pack to work with me and wore inside my waistband. But even with trying to sit still, it still was aggravated a bit so it's a bit sore tonight.
I see my dr. next week, and I'm going to press the issue of my treatment with him. He can't be the only one with power at that clinic to get people appointments.
I honestly think this whole thing was irritated or infected, and my body just responded by ballooning up and that is what caused the pain. I think the oozing is from the swelling.
So we will see what shakes out. I'm just happy to be out of the pain and able to wear pants again!
I see my dr. next week, and I'm going to press the issue of my treatment with him. He can't be the only one with power at that clinic to get people appointments.
I honestly think this whole thing was irritated or infected, and my body just responded by ballooning up and that is what caused the pain. I think the oozing is from the swelling.
So we will see what shakes out. I'm just happy to be out of the pain and able to wear pants again!
02/29/08 Update
Feb 29, 2008
The results of my CT scan are in. I have a thickening of the bowel wall at the jejunum. Well, that's where the tube is, and is somewhat expected. He said it is also not uncommon. And shouldn't cause all the pain or swelling.
So I'm supposed to stick it out, see if it resolves on its own, and see Dr. D. on my next appt. on March 10. Keep taking my pain pills to have some semblance of life.
Man I hate this. So I'm considering if I should go to Adventist and get a second opinion? I don't necessarily need to go to ER, but i don't know where to go and how to get an urgent appt. with someone else.
So I'm supposed to stick it out, see if it resolves on its own, and see Dr. D. on my next appt. on March 10. Keep taking my pain pills to have some semblance of life.
Man I hate this. So I'm considering if I should go to Adventist and get a second opinion? I don't necessarily need to go to ER, but i don't know where to go and how to get an urgent appt. with someone else.
02/28/08 Update
Feb 28, 2008
Imagine that! After two days of symptoms and a trip to ER and the clinic is finally "ALLOWING" me an appt. with another dr.! Well praise the ground they walk on! I'm a lucky person because I "should be lucky I have the appt" I have on March 10!
Got a call from some lady at the clinic this morning, asking how I am. Of course I said the same as I was two days ago when I went to ER! So she said that an appt. had "opened up" with one of their other drs. today at 1:20. I'm going. I was going to go to another hospital today anyway.
So not 10 minutes later, my dr. calls me personally saying he is heading out of town this morning (I was told he was GONE until the 10th!) and that he wants me to see one of this associates. He said that I should not go to the ER unless I'm super sick because I will only sit there for hours. Really? Guess I can confirm that.
He said that he had TOLD his CLINIC staff that any post op with problems HAS to be worked in to clinic THAT DAY. Well, I can tell you I have talked to no less than 5 different people answering the phone, and all I get is run-around and that I should be happy with what I have because that's the best they can do.
I don't know whether to be happy that they have hired more people to work on this huge backlog of stuff I've been hearing about, or whether to cry because they all think these drs. walk on water and you have to have permission just to see one of them!
Anyway, my fever disappated last night so I decided to wait until today to go in anywhere. I didn't want my kids to have to put up with being here alone again for another evening/night. Anyway, my fever is down to 99 this morning, about where it was when I went to ER. They don't seem to think that is anything anyway.
But the pain, swelling and bleeding still persists. So we will see what happens today. I am seeing Amy Williams old dr. and I know she has high praise for him. Also, if this is a gall bladder episode, he would be the doc to take care of me anyway, so "they" say.
Got a call from some lady at the clinic this morning, asking how I am. Of course I said the same as I was two days ago when I went to ER! So she said that an appt. had "opened up" with one of their other drs. today at 1:20. I'm going. I was going to go to another hospital today anyway.
So not 10 minutes later, my dr. calls me personally saying he is heading out of town this morning (I was told he was GONE until the 10th!) and that he wants me to see one of this associates. He said that I should not go to the ER unless I'm super sick because I will only sit there for hours. Really? Guess I can confirm that.
He said that he had TOLD his CLINIC staff that any post op with problems HAS to be worked in to clinic THAT DAY. Well, I can tell you I have talked to no less than 5 different people answering the phone, and all I get is run-around and that I should be happy with what I have because that's the best they can do.
I don't know whether to be happy that they have hired more people to work on this huge backlog of stuff I've been hearing about, or whether to cry because they all think these drs. walk on water and you have to have permission just to see one of them!
Anyway, my fever disappated last night so I decided to wait until today to go in anywhere. I didn't want my kids to have to put up with being here alone again for another evening/night. Anyway, my fever is down to 99 this morning, about where it was when I went to ER. They don't seem to think that is anything anyway.
But the pain, swelling and bleeding still persists. So we will see what happens today. I am seeing Amy Williams old dr. and I know she has high praise for him. Also, if this is a gall bladder episode, he would be the doc to take care of me anyway, so "they" say.
02/27/08 Update
Feb 27, 2008
was in the ER at OHSU yesterday afternoon and evening because I have swelling and severe pain around my J tube port. I also starting bleeing from the hole. I called Dr. Deveney's office yesterday morning to try to get in, and they said he had NO appts. before my next scheduled appt. on March 10. This was after explaining to them what was going on. So they put a message in to the "team" for someone to call me back. I waited, but things were getting worse. So I called my PCP. She snuck out to a dental appt. before they got the message to her, although her nurse said she would probably want me to see my surgeon.
So I had an appt. scheduled with my employer at 2:30 to talk about a re-entry plan for me to go back to work. I was in severe pain, but decided I needed to try to suck it up and get through the meeting. When I left there we went immediately to the ER where I sat for 2 1/2 hours before being called back. And then I was put in an "interview" room with just a bed. This room is the room they use for court held patients, usually accompanied by their police security. The door did not shut, except for electromagnetically, so I had to have it open the entire time I was there. There was also a window in the door that was not covered up. AGH! This is pissing me off just typing about it.
So, I get seen by a couple docs, who don't understand that I am swollen. Sure, I only weigh 112, so I don't look swollen! And during the 2 1/2 hour wait in the waiting room, my swelling did go down somewhat. But the pain was still consistently around a 4, unless trying to walk, or move, when it was more like a 6.
Anyway, they took an x-ray and confirmed that my J tube is in correctly, couldn't figure out WHY I was in such pain, or what the swelling was caused from. They gave me pain pills and told me to get an appt. with Dr. Deveney sooner than the 10th.
OOooooK! Ya, right! So I call first thing this morning and tell them I was ER last night. J tube is correctly placed, but no reason given for why I am in such pain, have swelling, and am still bleeding from the hole. They supposedly ruled out infection because the discharge didn't smell and I'm not running a fever. So, back to my phone call this morning. The lady on the phone puts me on hold to check on an earlier appt. She comes back and says to me, Dr. D. is out of town and I'm lucky to have the appt. I have! WTF!!!
So I said, there's got to be SOMEONE on the team who can see me sooner! She asked if I was still bleeding, um, YES! And she asked what they told me in ER. I said they gave me pain pills, said they didn't know the cause of the pain and swelling and the bleeding and too see Dr. D. earlier! So they sent an urgent message to the nurses to see what they could do.
I just got a call back. She said that Dr. Crawford saw me in ER last night and that she would call me back today. But later, "because we have some big thing going on here." She said Dr. Crawford told her to tell me to sit tight, that she wants to talk to me and then they will decide IF I need to be seen sooner.
WHAT DOES IT TAKE TO GET AN DAMN APPT. UP THERE! TO GET THEIR ATTENTION THAT SOMETHING IS WRONG! The amount of pain I am having does not equate to a tug on my tube from days ago. I have one ER doc telling me to get seen earlier, then I get the one from the clinic telling me to sit tight, not to worry, she will call me LATER. Well I felt like telling this lady that I MIGHT BE THE NEXT BIG THING happening up there if someone doesn't take me seriously!
What a nightmare! So I am waiting for a phone call back. I'll let you know what happens. But I'm pretty pissed. I can't seem to get anyone to listen to me!
So I had an appt. scheduled with my employer at 2:30 to talk about a re-entry plan for me to go back to work. I was in severe pain, but decided I needed to try to suck it up and get through the meeting. When I left there we went immediately to the ER where I sat for 2 1/2 hours before being called back. And then I was put in an "interview" room with just a bed. This room is the room they use for court held patients, usually accompanied by their police security. The door did not shut, except for electromagnetically, so I had to have it open the entire time I was there. There was also a window in the door that was not covered up. AGH! This is pissing me off just typing about it.
So, I get seen by a couple docs, who don't understand that I am swollen. Sure, I only weigh 112, so I don't look swollen! And during the 2 1/2 hour wait in the waiting room, my swelling did go down somewhat. But the pain was still consistently around a 4, unless trying to walk, or move, when it was more like a 6.
Anyway, they took an x-ray and confirmed that my J tube is in correctly, couldn't figure out WHY I was in such pain, or what the swelling was caused from. They gave me pain pills and told me to get an appt. with Dr. Deveney sooner than the 10th.
OOooooK! Ya, right! So I call first thing this morning and tell them I was ER last night. J tube is correctly placed, but no reason given for why I am in such pain, have swelling, and am still bleeding from the hole. They supposedly ruled out infection because the discharge didn't smell and I'm not running a fever. So, back to my phone call this morning. The lady on the phone puts me on hold to check on an earlier appt. She comes back and says to me, Dr. D. is out of town and I'm lucky to have the appt. I have! WTF!!!
So I said, there's got to be SOMEONE on the team who can see me sooner! She asked if I was still bleeding, um, YES! And she asked what they told me in ER. I said they gave me pain pills, said they didn't know the cause of the pain and swelling and the bleeding and too see Dr. D. earlier! So they sent an urgent message to the nurses to see what they could do.
I just got a call back. She said that Dr. Crawford saw me in ER last night and that she would call me back today. But later, "because we have some big thing going on here." She said Dr. Crawford told her to tell me to sit tight, that she wants to talk to me and then they will decide IF I need to be seen sooner.
WHAT DOES IT TAKE TO GET AN DAMN APPT. UP THERE! TO GET THEIR ATTENTION THAT SOMETHING IS WRONG! The amount of pain I am having does not equate to a tug on my tube from days ago. I have one ER doc telling me to get seen earlier, then I get the one from the clinic telling me to sit tight, not to worry, she will call me LATER. Well I felt like telling this lady that I MIGHT BE THE NEXT BIG THING happening up there if someone doesn't take me seriously!
What a nightmare! So I am waiting for a phone call back. I'll let you know what happens. But I'm pretty pissed. I can't seem to get anyone to listen to me!
02/08/08 Update
Feb 08, 2008
So I went to see my surgeon yesterday to get the results to my ultrasound of my gall bladder and my upper GI.
Found out I have sludge and small stones in my gall bladder and I did, in fact, pass a stone last month. However, because I'm only 2 months out from my revision surgery, and the fact the stone passed and didn't get stuck for a long time, he doesn't think it's a good idea to take out my gall bladder. At least yet. So I have to live in fear of another attack, and if it gets what they call "acute", then it will come out as necessity, but for now it is better for me to just let it sit. He said he would have to do an open surgery because lap is out due to my last open surgery. So, too many risks at the moment to support taking it out now. He does want me to start taking my Actigall meds again to prevent more sludge and stone build up.
On to the upper GI. My swallowing pain is probably just irritated esophagus from severe acid reflux. It should heal with the Prilosec I'm taking. The acid is more neutral with the meds. There is a surgical procedure that can be done to help stop the reflux, but I'm not a candidate due to my unusual anatomy now, and being so soon out from surgery. So, I will probably be on Prilosec long term.
I have a super small, squished pyloric valve, however, it is not small enough to prevent the acid from passing back up into the stomach sleeve and up into my esophagus, so the trick will be to see if I can eat comfortably enough with soft foods, and chewing well, to not intervene by trying to enlarge that opening. I get the impression he didn't want to touch anything inside for quite some time to let me heal from my revision.
So, my plan is to take me off my tube feeds during the day, at least 12 hours a day. And see if I can still gain weight with only night feeds and real food during the day. Once I get another 5 lbs. on, I can get off the feeds and see if I can maintain for a month with no intervention. Once I am stable and not losing while not on tube feeds, then they will remove the tube. So I will have it for at least 2 more months, but only using it intermittently. So it will be nice to not be tied to it during the day and having to schlep the pump with me when I go to appointments. This also clears the way for me to start thinking about returning to work.
So, all in all, I think it is a pretty positive report. Nothing major or immediate need for more surgery. And I'm up 20 lbs.!!!! Feeling better all the time.
Thank you all for your support of my journey through this really hard time in my life. I will keep my pre-post revision pics up for a while, but will soon change them to "friends only" for viewing. I don't want them up in public domain forever. Thank you all who have given me words of encouragment and support through prayers and well wishes. I appreciate you all so much for helping me get through this.
Found out I have sludge and small stones in my gall bladder and I did, in fact, pass a stone last month. However, because I'm only 2 months out from my revision surgery, and the fact the stone passed and didn't get stuck for a long time, he doesn't think it's a good idea to take out my gall bladder. At least yet. So I have to live in fear of another attack, and if it gets what they call "acute", then it will come out as necessity, but for now it is better for me to just let it sit. He said he would have to do an open surgery because lap is out due to my last open surgery. So, too many risks at the moment to support taking it out now. He does want me to start taking my Actigall meds again to prevent more sludge and stone build up.
On to the upper GI. My swallowing pain is probably just irritated esophagus from severe acid reflux. It should heal with the Prilosec I'm taking. The acid is more neutral with the meds. There is a surgical procedure that can be done to help stop the reflux, but I'm not a candidate due to my unusual anatomy now, and being so soon out from surgery. So, I will probably be on Prilosec long term.
I have a super small, squished pyloric valve, however, it is not small enough to prevent the acid from passing back up into the stomach sleeve and up into my esophagus, so the trick will be to see if I can eat comfortably enough with soft foods, and chewing well, to not intervene by trying to enlarge that opening. I get the impression he didn't want to touch anything inside for quite some time to let me heal from my revision.
So, my plan is to take me off my tube feeds during the day, at least 12 hours a day. And see if I can still gain weight with only night feeds and real food during the day. Once I get another 5 lbs. on, I can get off the feeds and see if I can maintain for a month with no intervention. Once I am stable and not losing while not on tube feeds, then they will remove the tube. So I will have it for at least 2 more months, but only using it intermittently. So it will be nice to not be tied to it during the day and having to schlep the pump with me when I go to appointments. This also clears the way for me to start thinking about returning to work.
So, all in all, I think it is a pretty positive report. Nothing major or immediate need for more surgery. And I'm up 20 lbs.!!!! Feeling better all the time.
Thank you all for your support of my journey through this really hard time in my life. I will keep my pre-post revision pics up for a while, but will soon change them to "friends only" for viewing. I don't want them up in public domain forever. Thank you all who have given me words of encouragment and support through prayers and well wishes. I appreciate you all so much for helping me get through this.
02/07/08 Update
Feb 07, 2008
Ok, I finally got my photos off my camera. I added two new albums. One is a pre-post surgery album and one for my new haircut. Warning, there are pics of me in my underwear at 90 lbs. and it's not pretty. But it shows pretty well what I've been through with the malabsorption syndrome. I think you will see good progress from two months ago.
Today I'm at 110 lbs.! Praise God! I see my dr. for a follow up to my ultrasound and upper GI from last week. We will see what he finds and where we go from here. I want to discuss getting off my tube feed. I've been cutting back to using it only at night and actually eating during the day. And I'm still gaining. So hopefully it will be soon. I can't wait to get my little hole healed up so I can take baths again.
Let me know what you think of the new me!
Today I'm at 110 lbs.! Praise God! I see my dr. for a follow up to my ultrasound and upper GI from last week. We will see what he finds and where we go from here. I want to discuss getting off my tube feed. I've been cutting back to using it only at night and actually eating during the day. And I'm still gaining. So hopefully it will be soon. I can't wait to get my little hole healed up so I can take baths again.
Let me know what you think of the new me!
2/3/08 Update
Feb 03, 2008
Well, it's Superbowl Sunday and the big game is over. We had our kids here this weekend and we made a big deal out of watching. We got a bunch of munchies, and of course got way too much.
Today was a good day. I have been off my tube feed all day, grazing. I have good stuff to eat though, not to worry.
I have been slowly gaining and getting closer to approaching a healthy weight since my revision surgery 2 months ago. I'm up 16 lbs. as of today. Woo hoo! I'm getting back into my size 2 jeans from 0's being baggy. I'm getting more energy too.
I was into the dr. on Friday for an upper GI and an ultrasound of my gall bladder. The Upper GI showed I have severe reflux. Well, no duh! And the radiologist said that the swallowing pain I've been having could possibly be caused by the reflux. However, he did say my dr. may still want to do a scope on me.
I didn't get any insight on the ultrasound. So don't know if they found any stones or enlarged ducts. I have a follow up on Feb. 7 to discuss the results. Hopefully, I will get some answers. As it's still really difficult to eat by mouth because of the pain.
Overall, I think I'm progressing nicely.
As part of my recovery, I decided to get my hair chopped off. I need to snap a pic and post. I really like it. It's short and I haven't had short hair for 10 years. Maybe I can get my husband to take some pics tonight.
Hope all is well with everyone!
Today was a good day. I have been off my tube feed all day, grazing. I have good stuff to eat though, not to worry.
I have been slowly gaining and getting closer to approaching a healthy weight since my revision surgery 2 months ago. I'm up 16 lbs. as of today. Woo hoo! I'm getting back into my size 2 jeans from 0's being baggy. I'm getting more energy too.
I was into the dr. on Friday for an upper GI and an ultrasound of my gall bladder. The Upper GI showed I have severe reflux. Well, no duh! And the radiologist said that the swallowing pain I've been having could possibly be caused by the reflux. However, he did say my dr. may still want to do a scope on me.
I didn't get any insight on the ultrasound. So don't know if they found any stones or enlarged ducts. I have a follow up on Feb. 7 to discuss the results. Hopefully, I will get some answers. As it's still really difficult to eat by mouth because of the pain.
Overall, I think I'm progressing nicely.
As part of my recovery, I decided to get my hair chopped off. I need to snap a pic and post. I really like it. It's short and I haven't had short hair for 10 years. Maybe I can get my husband to take some pics tonight.
Hope all is well with everyone!
About Me
Oregon City, OR
Location
21.5
BMI
Surgery
11/29/2007
Surgery Date
Sep 07, 2006
Member Since
Before & After
rollover to see after photo
Christmas 2005
200 lbslbs
