It was a dark and rainy night....

Horror movies usually start something like that, don't they?  My life has turned into one.  This blog that started as a way for me to journal my weight loss or lack there of, has turned into a way for me to journal my medical journey through my digestive tract. 

When I last posted I was trying to patiently wait till Nov 4th for the next surgery.  The pain in the tube had ramped up again the week before surgery and I did call in to my doctor who told his nurse that it is 'just the way she is' or 'that is just the way it is with her'.   So definitely feeling listened to over here.

Nov 4th comes.  I go into surgery with a little apprehension.  There is still a risk of a colostomy bag.  When I awoke, much to my surprise, I did not have a colostomy bag but had an ileostomy bag.  Here is what Jim was told by the doctor:  My insides were coated in a concrete-like substance, the inflammation we had been hoping would go away had not but they were able to correct the colon issue.  However, the drain tube had punctured my small intestine and so they had to repair it and then, in order to give it time to heal, they had to put in the ileostomy.  Keep this in mind as it is different from what I was told later.

Over the next few days, I deal with the expected abdominal pain. I do have 29 staples from groin to almost breast bone, after all.  And the odd ileostomy bag and stoma.  The stoma doesn't hurt, it's just weird.  How my system now works is described to me by a dietician and is something like this:  I can eat. After I swallow, the food goes into my stomach to be mixed with stomach acids and then would normally be sent into the small intestine where the water and nutrients would be absorbed.  However, after the food leaves my stomach it dumps into this lovely ileostomy bag.  The nurses empty the bag constantly.  Sometimes I can actually see my meal from 20 min previously. They take me off fluids but leave the catheter in.  Some guy who is part of my doctors team comes in every morning and is all perky and positive.  He talks about moving from ice chips to clear liquids or clear to full liquids.  My doctor is in about 15 min later. He sometimes reiterates what the other guy said, looks at the bag, and asks me how I feel.  I wait a few hours till my day nurses come in and then ask them what the doctor put in for notes and then I have a better feel for what's going on.  I haven't left the hospital and I am already frustrated.  They talk about sending me home for days before it ever looks like it will happen and then I ended up dehydrated, which is a major side effect of the ileostomy, so I go back on fluids for a day. I get sent home the following Tuesday, November 11th. 

The day before I go home, I decide, with a little coercion from my co-worker Mary, to corner my doctor and ask him what the hell went on?  I am told that we talked about the small intestine stoma at my appointment 5 weeks ago and that it was planned.  Yes, the tube had made a puncture but they had fixed it.  When I specifically asked about the inflammation and the prospect of having gone in earlier I was told that they could not have done it successfully.  They had to wait till the inflammation was gone.  There was nothing they could do about the tube puncturing my intestine.  Going in early wouldn't have helped.  See how this is different from above.  And no, the ileostomy was never planned. 

So, Jim and I are frustrated.  We feel like we have been handed around and ignored.  We went ahead and filed a grievance with the hospital board. 

I came home on Tues but by Thurs I had started dry heaving. It was worse with movement.  I called Thurs morning at 8 am.  I have 29 staples that hurt like hell when I heave. I called again later that day and was told someone would get right back to me.  It was 5:13 pm before someone called back.  9 hours.  Seriously?  I now have staples that bleed and ooze continuously.  Fun.  I reread my discharge papers and they say to alert my doctor to any discharge coming from the incision so on Saturday morning I email and let them know that my staples are oozing and dripping.  By noon on Monday, I have also left a message for them. I am going through gauze like crazy.  Still waiting to see if this is normal or not.

It is Nov 17th today.  I now weigh 156.8 fully dressed.  I cannot take a shower without having to rest in the middle of it.  Then I need to get dried off and get appliances put on before I start making a mess all over the bathroom.  There is no control when you have a hole in your stomach. Then I need to dry my hair, brush teeth, deodorant, etc and get dressed. I'm still working on the shower.  I need to get through a shower without finding myself sitting on the floor of the shower (which desperately needs cleaning).   When I am up too long I get shaky and weak and feel like I'm going to pass out.  I am able to pass some urine roughly 4 times a day and therefore am not dehydrated but am probably on the edge of it.  I was hoping to be back at work in a few days, but in reality, I don't think it's going to happen.  As it is this has taken me upwards of 3 hours to write.  I have to take breaks, I have no focus and I can't concentrate.  It is frustrating to not have control over the things you have always had control of. 

I do have to add that my husband and daughter have been amazing.  I could not have come this far without their help.  The rest of my family and friends have helped out also and I am very thankful for everyone.