Haven't been on in a while, update?

Hello everyone, its been FOREVER since I logged on. (sorry!!)
So I guess to give an update, I am still one huge medical mess. I haven't found a surgeon yet. No one will touch me with a ten ft pole. The hernias have gotten 10x worse than they were a few months ago and I now look like a woman pregnant with twins crossed with a beached whale. I have a few appointments with different surgeons coming up in the next weeks but its probably going to be the same story, my case is out of their realm of practice and they don't know who can fix it. On the bright side I have been in remission for 3 years this month!!! I am worried though, because I am not currently medicated and can't be until after all the surgeries are done, I feel like I am messing with fate. I keep getting small "warning" stomach aches, but other than that everything is still normal. I am doing everything I can (outside of prescribed medicine) to keep it under control. But the stress of what I am going through with my abdomen is not helping at all. If I can keep myself in remission, and get my abdomen fixed for good, then for the first time in over 6 years, I can lead a full happy life. Just need to figure out how to get there.

Thanks for the update hun, just to confirm how many hernia's do you have and why are the docs struggling to sort things in this area? I am glad to hear the tum is settled, the tummy aches might be down to the worry you understandably have, I take it you still see the GI doc on a fairly regular basis so they can keep an eye on this?

Hello angrybird!
I am not really sure how many hernias I have, Im guessing around 7. I had a CT scan done in May, they found out that most of my intestines are above my abdominal wall, so basically there isn't anything protecting them but my skin. I can literally watch my food digest. (GROSS!) My colon (where my Crohn's is) and liver are all twisted up in my muscles as well. Its going to be a very complex and complicated surgery trying to piece my abdomen together without hurting any of my organs in the process.

Oh my stars that is a lot, I thought my hubby had a lot with 3 at once! I do hope the new docs will be able to figure something out for you hun.

I hope so too, it is very stressful and very painful. I am trying to get SSI because there is obviously no way I can hold a job right now, and even that is incredibly stressful. I just want someone to throw me a bone

Sounds like a right nightmare hope they figure something out soon and sort it for you. Hugs and sending positive vibes your way. Keep us posted please x

I ish you luck and many many crossed fingers and toes that someone has the empathy to help you find someone to help you

I got turned down by another surgeon today, but he actually gave me the name and number of someone that might be able to help, so I am going to call that office tomorrow and try to schedule a consultation. I feel like I might finally be getting somewhere close to having this surgery done

I wish you all the luck in the world this surgeon is able to help you. I can't begin to imagine what you are feeling but do remember to smile

If you do have the surgery have they said they could come back at any time after they have removed them ?

yea, I will always have a weak abdomen, after this next surgery I am going ot go to a physical therapist to start strengthening my core so I can try to prevent this from happening. But that is why I am trying to get SSI, so i can have time to try and make everything stronger before I go back to work. But unfortunately, Uncle Sam and aren't seeing eye to eye at the moment

Wishing you lots of luck hun, please keep us updated on how you get on.

Good luck and keep us posted on what they say hopefully they'll be able to do it for you xx

How's everything going ?

Its going I guess. I have an appointment on Monday to see a new surgeon, but I don;t think its going to get me any closer to getting my abdomen fixed. I am trying to find the chief of plastic surgery at the hospital that I want to have my surgery at, but for some reason I haven't been able to find him/her. I am hoping that this surgeon will give me a refural to see the chief of plastic surgery.

so, its been bittersweet bad news kind of day. I don't really know where to start so I might jump around a little bit. I saw a new surgeon today and I was very impressed from the minute I walked in. She explained everything in detail about what is going on with my abdomen, and I didn't feel dumb asking questions. She took the time. Basically what was several hernias, is just now one massive hernia that is going to be hard to fix. There is a layer of tissue between your skin and muscles, I don'e have that. Most of the skin over my abdomen is dying and it won't make it through the surgery, BUT I have so much extra skin around my abdomen from everything that I have been through, that they can just stretch it out to make it fit. so, on top of that, she couldn't find my muscles. They are probably buried deep under my organs at this point. When all is said and done and everything is back where it needs to be, she is going to stitch a large piece of mesh to my ribs and hip bones so keep everything in place. Now, nothing is scheduled yet, and she might not be my doctor, she is sending me to a general surgeon that she likes to work with in 2 weeks to see what he says, if they think they can tackle it together then we will move forward

Jeez louise! That tum of yours does not things by half does it? At least she is willing to look into things and hasn't turned you away with a shake of the head. Please keep us updated on the appt with the surgeon.

AB
xx

I am so hoping that things can be corrected for you! I've got a monster hernia as well, and I can only partially relate to what you have been going through.
:rosette2:

Hello everyone
So, I went to the general surgeon today that the plastic surgeon I saw last week reffered me to, and for once I was not turned away (yet) He thinks that he can help me, but only time will tell. He is going to go over all my medical records in the next few days and schedule a follow up to discuss our options. At that point his assistant will start working with the plastic surgeon to see when they both have a day where they do the surgery together. So I am thinking we will have a surgery date by the end of the month. The general surgeon doesn't think I will be hospitalized for to long (maybe a week or a little more) so thats good news. But he agrees with me, I can't go back to work for a long time. If we want this surgery to take and the hernias not to come back, its going to be a long recovery process. The beginning of the end is near?

Hey Afids

I feel you are more optimistic and confident today.. hope it all goes well and you stay in good health and never need surgeries again

Oh, please let this be the beginning of the you getting sorted out. I have a horrendous time with mine, and I can only imagine what you are going through.
:rosette2:

Oh that does sound encouraging, I really hope things work out for you with this.

UPDATE
I have found 2 surgeons that think they can help me, and, finally there is a surgery date. (Feb. 18th). I am very nervous about this surgery. This will be my 15th surgery, 13th for a stupid hernia that won't go away. I don't really know the details yetof how they intend to fix it, and honestly, I.don't want to know. Its going to be very painful, I anticipate being in the hospital about 3 Weeks and the recovery after that is going to be several months. I do know that they intend on tying a giant piece of mesh to both sides of my ribs and both my hips to try and create some type of abdominal wall. Eventually my muscles are supposed to attach to the mesh and combine to strengthen what's left of my muscles. (does that make sense? Not sure if I explained it very well) I also know that they are going to have to figure out a way to play tetris with my organs and try to get them all back in the right place.
Anyways sorry for the long update, thanks for your support!

I am scared for you, and I am very hopeful for you at the same time. I dont pray alot, but I will certainly be getting my prayer mat out for you on the day of your surgery.
:rosette2:

Thanks for the good thoughts and prayers I am going to be a nervous wreck as it gets closer, hopefully this will be the end and I won't have any complications this time and I won't need any more surgeries after this

Thanks for the update hun, on one hand I am pleased that someone is willing to try and sort things for you on the other this does sound very worrying. I am going to be keeping fingers crossed that this can go well for you.

Wow thats a lot to deal with. I cant imagine what you have been going through but I can tell I will say a prayer that you get some relief and closier to this . ( I never pray ) I hope this goes well for you and get to return to a better life with out all this pain .
Peter