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afidz

afidz

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I haven't really been on much lately. I have been so overwhelmed by doctor appointments and bad news, I needed a break from everything.
Originally I had one wound created by my doctor to clear out dead tissue. I was fine with that. It was healing and everything was doing great. Then out of nowhere a second wound popped up draining quite a bit of fluid. Then a third. Then the new tissue in the first wound died again, so she had to cut it back open. After that my surgeon threw in the towel (I have a lot of respect for doctors that do so)
I was admitted into the wound care center as an outpatient a few days later. The wound care doctor did a culture and has it turns out I am growing staph and strep. During my first visit we discovered that there was a 4th wound just under my skin but he hadn't broken through yet. She decided not to cut it open and see what it does on its own. Within a few days, he did open up and combined with the second wound. So now that wound is bigger than a quarter and about half an inch deep. Hopefully things on that front will start to get better.
My iritis gets better until I am off the drops and it comes back with vengeance. My eye doctor doesn't think it will go away until Crohn's is under control. Can't do that until the wounds are cleared.
So, I then started having severe back pains, and pains in my right arm as well. I went back to my ortho and he saw several areas of concern in my back. He doesn't want me to start physical therapy at this point because it could really mess things up worse. I am being sent for a few MRI's next week, but I am not sure I can get them as they want 400 upfront. (yea right) After thinking about my symptoms I looked up Ankohlising Spondlitis. I have all the signs and symptoms of it. So I need to be tested for that. One of the treatments for it is Humira. Which again, I can't start because of my wounds. I am in a never ending circle.
Anyways thats the jist of whats going on. I hope everyone understands why I haven't been on much.
 
Oh afidz :( My word!!!! What a total pain in the rear! :ybatty: (Decide if you want the pun intended or not) We don't blame you one bit for not being on as much. Best thing to do is to get yourself taken care of. Sending lots of hugs your way. :hug: :ghug:
 
Sorry you are going through all this. It must be so frustrating, I know you just want to feel like you are on the mend.
I really hope things start turning around for you soon x x
 
Keep us posted on whether or not you get the MRIs. Did anyone suggest why you get infections so much after surgery? Seems to happen rather often. :( I know this one was a fairly big surgery though yet I was still hoping it would finally go smoothly for you rather than having to deal with more infections. D:
 
I had to cancel the MRI's because my deductible was too high. I am going back to the ortho in June to talk about AS and if he can diagnose with an x-ray instead.
While changing my dressing today I noticed a very large blister/bubble type mass at the bottom of my wounds. Great. Another thing for me to deal with. Going to the wound care center tomorrow. At this point I wouldn't be surprised if I have to get the wound vac
In all honesty, I don't want to be me anymore. I am incredibly frustrated with my health. I just want to move on with my life.
 
Ugh insurance companies are the worst! I'm not sure if an ultrasound would be helpful but id imagine its much more cost effective? Not sure about the ultrasound versus an x-ray. I think there is growing movement away from CT, x-ray to ultrasound and MRI due to the radiation.
 
My ortho needs to see inside my spine, so ultrasound would be pretty pointless, X-Ray wouldn't get inside my spine but there would be key things he could look for to diagnose
 
SO, another update. The bubble under my skin is either dead fat that built up or its severe edema. My surgeon wants me to keep an eye on it, my body should get rid of it on its own. No, I don't trust my body to do what its supposed to do because lately, it hasn't. But as long as its not getting worse, I don't care
Good news/Bad news- Thanks to the help of the wound care center, 2 of the 3 wounds are nothing but scars and bad memories! However, the wound thats left is making sure I never forget it. It now goes all the way down to the mesh that was surgically implanted in March. Luckily the mesh that was put in is organic (its made from pig intestines!) so it doesn't get infected very easily. Thankfully my doctors listened when I told them that I don't heal and that I get infections easily. The wound has also started tunneling under the skin. So, now for the fourth time, I am getting a wound-vac placed on the wound. Great timing as I am going on vacation next week! (not) I will post pictures of what a wound-vac is, as I don't think its very common, I only know of one or two people on here that have had one. So yea, thats whats going on this week.
01b.jpg

This is not my stomach :p
And its connected to this 24/7
01a.jpg
 
Oh my goodness afidz!

I just had to post some encouragement for what you're going through! I've dealt with a LOT of wounds in my time, and I have to say this one is quite impressive! You're amazing dealing with this at home. Do you at least have Home Health coming in to check on you? You said you go to the wound care clinic, so maybe you have no issues with travel? I see you're in McKinney. Are you just going to the Medical Center there, or traveling to Plano? Both are excellent hospitals, but the one in McKinney has a real personal touch. My Dad was diagnosed with Crohns at that hospital and was in there quite a while. Excellent staff.

Anyway, again, I just wanted to say how brave and special you are handling all this. I admire you!
 
:hug: :hug: :hug: to you. I've got all my fingers crossed that things start looking up for you. You really, really deserve a break and some support. :hug:
 
You scared me for a second. Thought your skin changed a funky color. o_O I've never had a wound vac before and it definitely looks like its not a good time. :( Hopefully time flies by though and you'll be able to go back to being you. :) *HUGS*
 
Traumanurse I'm going to the Medical center of Plano wound care center. I don't think McKinney has one because the last time I was sent from there to Plano. The picture I posted is not my wound, mine is a lot smaller. Thanks for response
Lol Jen, I changed ethnicities while your weren't paying attention
Bear I've found some amazing people from all over the county that are there for me no matter what. But yes, sometimes is nice to getsupport elsewhere as well
 
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So, I got the wound-vac placed yesterday. I am not very happy about it, but I was reminded by Jennifer that its only temporary and its going to help me heal quicker. (Thanks Jen)
On the Crohn's front, I started noticing blood in my stool a few days ago. My GI is devasted that he can't really do anything for me at the moment because of the wound. But he did put me on a Flagyl/cipro cocktail to see if that helps at all. He also ordered bloodwork and a stool study to try and see if anything else is going on.
 
Good grief...you surely are being put through the wringer hun. :ghug:

Fingers, toes and everything else crossed that the wound-vac weaves it's magic and all is soon healed! :goodluck:

I also hope that antibiotics settle your bowel down and the tests come back okay, that is, no surprises!

Thinking of you and sending loads of love and healing thoughts your way. :heart:

Dusty. xxx
 
DustyKat said:
Good grief...you surely are being put through the wringer hun. :ghug:

Fingers, toes and everything else crossed that the wound-vac weaves it's magic and all is soon healed! :goodluck:

I also hope that antibiotics settle your bowel down and the tests come back okay, that is, no surprises!

Thinking of you and sending loads of love and healing thoughts your way. :heart:

Dusty. xxx
Click to expand...

I second Dusty. Hopefully they'll be able to start helping you feel better soon. :hug:
 
Hope you heal quickly so you can get the Crohn's back under control and start feeling like your normal self again. :hug:
 
A lot has happened in the last couple of weeks. And for some reason I just felt the need to keep it to myself.
My wound took a turn for the worse and created 3 other very large wounds. Everytime I went into the wound care center, they found more tunneling, more puss, and new infection. When I went in on Friday I told them that I had been in a lot of pain and didn't know why. Basically there is a large wound under my skin (like a pocket) that all four wounds were feeding into. And then on Monday, they found the same thing on the other side. On one hand, I was really upset that they found these hidden pockets because its more for me to deal with. On the other hand, now that they found them, they can treat them.
Its hard to explain how hard this all is on me. Its taking a toll on my mental health as well as my physical. I have to go to the wound care center at least 3 times a week. By the time I leave there I am so exhausted (I loose quite a bit of blood) that all I want to do is go home and take a nap. But I can't. I have to power through my day.
A few weeks ago, while I was waiting in the waiting room at the wound care center, a fireman noticed that we were there for the same thing, a vac change. I asked him about his and he asked me about mine. Then I got called back and I never spoke to him again. Well apparently I am some type of celebrity at the wound care center. He told his nurse that I was inspiring to him, I've been through so much and kept a positive attitude. He told the nurse that my courage will get him through this. I know all of the nurses talk about me after I leave, saying similar things. ( a little birdie told me) But what people don't realize is that I don't have a choice but to be strong. And I am tired of having to be strong. I honestly don't want to do it anymore. I can't handle one more ounce of bad news. I just want to move on with my life.
Anyways, sorry for the vent. My whole point was to say that today was a good day for once. My wounds showed drastic improvement, the tunneling has come in at least 3 inces (amazing!) and the tissue in my wounds is very healthy. My body is finally beginning to let go of the extreme water retention that started in November and I am drastically loosing weight because of it. (In a good way) They finally think they know whats wrong with my back (a form of AS called enteropathic arthritis) so now I can move forward with that and get further testing. Once my wounds heal, I can go back on Humira and hopefully then feel better and feel normal.
 
All the :hug: in the world to you. You ARE inspirational. You do have to be strong because you have no choice but to deal with this - but you don't have to deal with it with a positive attitude. You haven't let this turn you bitter, and that's what's so wonderful about you. :hug:
 
Glad things are finally starting to turn around for you. I hope they continue to heal and you'll start feeling better even if it's little by little. Sending you lots of hugs. :hug:
 
Oh afidz...:ghug:...I hear what you are saying about needing to be strong but as SarahBear has said, that doesn't necessarily follow that you have to deal with it in the way you are. :heart:

The staff don't talk about you because of your wound but because of your attitude, your ability to rise above and press on. You had a profound effect on a gentleman that entered your life only briefly and that is a wonderful gift indeed.

You truly are inspirational afidz and we are very privileged to have you in our lives. :)

Dusty. xxx
 
Thanks everyone for the support, Dusty, not going to lie, your post made me cry. I keep being reminded bymynurses that what I'm going through would be hard on anyone and its ok to be upset. I get so angry sometimes. I just want to lead a normal life. My family thinks that this is the path I have chosen. I've done this to myself. They want me to lay in bed all day everyday . What good its that going to do? My sister was even bold enough to say "are you ever going to be normal?"
anyways, more good news. I put on my Jeans today for the first time in over 6 months. I have lost 5 lbs today alone in water weight. I am getting my body back. That alone is giving me the strength to power on and fight harder. I will win. And the last three years of my life will be nothing but scars and bad memories . Thank you all for being there, it means more than you know. This forum is an amazing. So glad I found place last June
 
:ghug::ghug::ghug:

It sure is okay to be upset, angry, pissed off and a raft of other emotions hun. The most important thing to remember is what you have chosen, and that is not as your family say but rather you have chosen to fight and endure and not allow Crohn's to control your life.

It is sad and disappointing that your family, the ones on which any child and sibling should be able to depend on more than anyone, choose not to see your amazing strength and compassion. Perhaps to do so only serves to prove to themselves that they possess none of your qualities. Well it is their loss and our gain and as much as I would wish that you received the kindness and compassion you so justly deserve from them it is my turn not to lie and say if it was their lack of support that brought you here then I am forever grateful for that. :)

I am so happy for you that your body is becoming your own again. Long may it continue!

Dusty. :heart:
 
I went to the wound care center today and they took the vac off! At least until Friday because my skin is very irritated and it needs a break. The tunnels in my wounds are a lot smaller than they were and the wounds them self are pretty shallow. It will be interesting to see the progress they can make on their own in the next few days. I may not have to get the vac on, it depends on how the week goes.
 
You are an incredibly strong and brave human being, and I admire you more than I can say. You keep hanging in there and know that I am keeping you in my thoughts and prayers. *hugs*
 
I hope it heals up on its own so you wont need the vac anymore and hopefully never again. :) Thanks for the update.
 
I just did the first dressing change on my own. IT WAS TERRIFYING! LOL I have to pack the tunnels and there is 7 of them. I was so afraid I was going to hurt myself trying to pack them. But I did it! (at least I think I did) My skin already looks and feels better than it did this afternoon. It very clearly needed a break from being sucked on 24/7 for the last month. I really do have a good feeling about the way things are going lately, I just hope that I am not getting too excited just to be let down. My back has been hurting a lot more the last few days, as if its reminding me that I need to get this **** down and over with so I can be on Humira once and for all.
Another thing that I worry about is the amount of pressure I am putting on myself and Humira. Yes, it worked great the last time I was on it, but what if it doesn't work next time? There is going to be over a 4 year gap between treatments. I just want my body to be back on track, I really just want to lead a normal life again, I can't even stress that enough.
Again thanks to all of you for being my support system. Its sad I rely on people all over the world, most of which I will never meet in person more than I do my own family. But whatever, at least I found the support that I need :ghug:
 
Congratulations and well done afidz! :award2:

Lordy I hope the wounds continue to heal ASAP and the Humira again weaves its magic for you! :goodluck:

Thinking of you, :heart:

Dusty. xxx
 
afidz said:
I just did the first dressing change on my own. IT WAS TERRIFYING! LOL I have to pack the tunnels and there is 7 of them. I was so afraid I was going to hurt myself trying to pack them. But I did it! (at least I think I did) My skin already looks and feels better than it did this afternoon. It very clearly needed a break from being sucked on 24/7 for the last month. I really do have a good feeling about the way things are going lately, I just hope that I am not getting too excited just to be let down. My back has been hurting a lot more the last few days, as if its reminding me that I need to get this **** down and over with so I can be on Humira once and for all.
Another thing that I worry about is the amount of pressure I am putting on myself and Humira. Yes, it worked great the last time I was on it, but what if it doesn't work next time? There is going to be over a 4 year gap between treatments. I just want my body to be back on track, I really just want to lead a normal life again, I can't even stress that enough.
Again thanks to all of you for being my support system. Its sad I rely on people all over the world, most of which I will never meet in person more than I do my own family. But whatever, at least I found the support that I need :ghug:
Click to expand...
So happy things are finally looking up for you! I have a feeling the humira will work fine now that it has been four yrs. We will pray for you! :ghug:
 
So its been 2 days with out the VAC on, and I have to say, so far I think its going well. I am not afraid of my wounds anymore, and actually I think its kind of fun to pack the tunnels. On that note, I think all of the tunnels (but 1) have significantly improved. I would say most of them are less than an inch and they were between 8 and 10 inches long each when they were first discovered. My wounds look pretty good, I am not really draining anything (except out of that 1 tunnel that isn't making progress). I go back to the wound care center on Friday to see if they want to put the VAC back on. I don't want it back on but if it can help close these wounds faster than I am all for it, at least I have a short break from it now.
I decided last night that its time to go back to work. I can't carry on with out a paycheck any longer. Its putting a lot of stress on my boyfriend and he has enough on his plate with out adding my bills to the table. I am not sure what kind of job I am looking for, something that doesn't involve any labor or bending and very low stress. Probably part time. I would love to work from home but those are hard to come by with out it being a complete scam.
 
Just be careful with whatever you decide job wise. Your healing is so much more important.

Glad you at least got a break from the vac in case they do decide to put it back on to get that one healed up like the rest of them. :)
 
Good to hear the wounds are going well afidz. Well done hun, you are obviously doing all the right things. :thumleft: I hope the follow up at the clinic brings positive news. :)

Good luck on the job front! Sending loads of luck that you find the right job and the right balance. :ghug:

Dusty. xxx
 
So, I am free from the VAC for atleast another weekend. Doctor was very pleased with the progress made.
 
Well done afidz! :):):)

Fingers, toes and everything else crossed that it keeps heading into positive territory!. :goodluck:

Dusty. xxx
 
I have officially gotten rid of the wound vac, the wounds are too shallow and the tunnels are too narrow for it to do any good. I am now putting a combination of silver and collagen and honey on my wounds to try to get them to heal the rest of the way. If you haven't seen my post already, I started an exercise program on Monday to try and strengthen my abdomen so none of this will happen again. I have an appointment with a Rheumy on August 8th to figure out exactly whats wrong with my back so I can start straightening that out as well. I am also currently in the market for a job. I feel like for the first time in a very long time things are headed in the right direction. For those of you that know me and what I have been through, this is a huge step forward. I realized the other day that I am HAPPY in my life. I didn't remember what it felt like to be happy, the last 6 years have been very difficult and I am not sure I could ever truthfully say that I was happy then. Talking to Andrew about how I feel now he suggested that I keep a journal to document these new emotions and so when I am feeling low or things get bad again I can read it and try to find my way back to this moment. Not a bad idea. anyways this post has gotten long enough and I am blabbering! Thanks all for your support, I love this community, its nice to know that I have support somewhere in the world :ghug:
 
I know I've already said it last night when we talked. But, I'm glad to hear that you're starting to feel better! I hope for your sake that you'll find a job soon. But, it will come. Meanwhile, your cheerleaders are here for you if you need us! :) Keep your chin up and sending hugs your way! :hug:
 
My wounds have made huge improvements since my last appointment, I'm pretty sure they will start to scab over soon if i let them. The tunnels are now only about an inch deep each (they were atleast 6 inches) and one of them is completely closed. I go to the wound center this afternoon. Should be a good ppointment.
I have an appointment with a new doctor (rheumy) on august 8th, hoping to be dx with something by the time the holidays come around, i just want to start feeling better
&
 
Thanks for the update afidz! :)

So good to hear that your wounds are continuing to reduce! Yay and well done to you hun.

No doubt they have told you not to let them scab over let yet.

Excited for you! :heart:

Dusty. xxx
 
yea, I don't think its quite time to let them scab, they probably want the tunnels to completely close before they let the wounds heal over, but I bet if I let it it would do so on its own. Its so weird to me that I am using collagen, silver and honey to heal my wounds, such an odd combination!
 
FUNNY THING today at the wound care center
Well first off, I canceled Monday's appointment because I had a bad cold and that was the last place I wanted to spread germs, where everyone there has larging gaping non healing wounds. I though it was common sense. The staff thanked me. I went today, and sitting in the waiting room EVERYONE was coughing and sneezing. I was blown away. Some of them were old and senile so had no common courtesy to cover their mouths.
Anyways, what was funny...
My doctor was VERY pleased with the progress made, and the nurse with her hadn't seen me in a few weeks and couldn't believe how quickly things had healed in that time frame. But then, the doctor had to cauterize my wounds to stop the healing because it was going to fast and it wouldn't heal right at the rate it was going. I thought it was funny, what once was non healing wounds became to quick to heal... :D
 
Yeah, I wonder why I start to feel better and then get reinfected. Then, I see someone coughing at work whether employee or customer and it all makes sense. Boy oh boy! :angry-banghead:

Hopefully your wounds will continue to heal themselves afidz! :hug:
 
Glad you're healing well!

I will never understand why people think it's okay to go somewhere where people have low immune systems and are vulnerable to catching everything, and potentially being really sick, when they are clearly unwell!!! GRRRRR I guess some people just really don't understand the risk to others. :ymad:

x
 
Well and what gets me the most, is all the people in that waiting room are there for the same reason. serious infection/healing wounds. So, wouldn't it cross your mind not to expose people in the same situation as you to your germs? Its just common sense to me. I feel like they should have signs up everywhere saying over your cough or "if your sick stay home" kind of thing. I put my appointment off for 3 days because I didn't want to have my germs growing in anyones open wounds. End rant
 
Bad news :(
Surgery #16 is more than likely just around the corner
I am not really to sure what happened, but it would appear that the hernia is back
One of two things (or both I guess) happened (in my opinion, still have to go back to the surgeon )
1. When my wounds were at their worst they were all the way down to the mesh that was implanted in March. You could see it when they took the wound vac of. Because the wounds were so big, a lot of stitches were exposed and had to be cut out. When you look at my stomach now, you can see an almost perfect outline of the mesh, I think the mesh moved around after the 7 or 8 stitches were removed holding it in place.
2. The infection that I had produced large pockets of puss that sat on top of the mesh and the tunnels that the pockets were being fed from were also on top of the mesh. The wound care nurses said they could distinctly feel the mesh when they were probing in them. Its possible the mesh could of been compromised and no longer effectively doing its job
I am working on getting an appointment with the surgeon to discuss my options, I am hoping for a laprscopic surgery so there is less chance of infections and wounds because I would love to move on with my life.
On the better side. One of my wounds is pretty much healed, its just missing the very top layer of skin which I am sure is growing back. I am pretty sure the tunnels are all non existent as well
 

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