Reconnecting the pipes

The time had come for me to have my ileostomy take down operation. I was beyond excited.. I had been a slave to the bag and a slave to the bathroom. I was desperate to have my life back to normal! I had to have a couple of pre-op appointments. I was referred to Dr. Duncan at Bethesda and Dr. Duncan, in turn, referred me to one of his colleagues at Fort. Belvoir. Having the surgery at Belvoir was ideal. The hospital was an hour closer to home and the facility was much nicer. I knew all of the nursing staff on the surgery recovery wing very well and I was comfortable there. I met with both teams to see which hospital could schedule me first. 

Bethesda could get me scheduled in a week and Belvoir, a month. I chose Bethesda.
This post has lots of disgusting things in it so I will show you a couple of beautiful pictures that I took of the spring Cherry Blossoms in DC first.

We scheduled surgery for April 25th early in the morning. We left the house at 4:30 am. My wonderful friend (who my mother connected me to) Karen came along to be an extra set of hands for John before surgery. Upon arrival, they took me into a private room to change, gave me a gown and hospital pajama pants (why?) and had us walk through the entire hospital with the other pre-op patients to the pre-op area. They designated us our beds and told us to get comfortable. We tucked ourselves into our little corner and we waited.

We waited.

We waited for a long time. I hadn't had anything to eat (or, more importantly for a migraine sufferer, DRINK) so..... BAM Migraine. Capitol M.

Karen trying to cheer me up

Finally the anesthesiologist came along with Fentanyl (the drug they use to put patients under general in most cases) and he game me a healthy dose, hoping I could nap and  that my headache would dissipate. He was wrong. He gave me more Fentanyl. Finally, Dr. Duncan came by and told me he was going to get prepped and I would be on the table shortly. I was glad, because I felt like my eyeballs were going to pop out of my head.

About a half an hour later, the anesthesiologist came over to tell me that Dr. Duncan has been called in to an emergency surgery and we had to wait until he was done. I begged for an injection of Imitrex. 

Disappointed that we had to wait longer

 By this time, it was around 10 or 11, Karen and John were starving and we were all getting anxious. Johnny was being absolutely perfect, because, well, he is absolutely perfect. Finally, someone came to wheel me into the OR. My headache had just gotten better. I think it was around 1 before I went under.

Lights, cold room, ACTION!

I don't remember waking up.... I do remember being terrified of what would happen next. I knew that I would have to have a bowel movement like a regular person. Dr O'boyle, my Vaginal/Rectal surgeon had said, "I honestly don't even know what to tell you about how that will feel." I was scared; Scared but BAG-LESS!

The wound was covered with a bandage and the nurse had drawn a circle with permanent marker around the blood stain. She was monitoring the bleeding. It was covered for about 12 hours and then I was able to take off the bandage. The next few photos are GRAPHIC.
The wound was packed with gauze, which I had to pull out. I was kind of horrified that I was supposed to do this. They wanted me to pull it out, take a shower and then have the nurse re-pack it.

Before unpacking

Pulling out the packing

The cavity that was "Sylvia the stoma"

If you asked me how to describe what it felt like to have a giant hole in your abdomen, I would tell you that it felt like I had a giant flipping hole in my abdomen. I was unable to use those muscles at all. I couldn't sit up, I couldn't really do much of anything for the first day or two. 

Then the C-Diff hit me.

I would describe C-Diff as the worst possible thing that could ever happen to a patient after having an ostomy reversal surgery. Wiki defines it as: "a species of Gram positive spore-forming bacteria responsible for a type of widespread infectious diarrhea. While it can be a minor part of normal colonic flora, the bacterium is thought to cause disease when competing bacteria in the gut have been reduced by antibiotic treatment."

Basically, I had had so many treatments of antibiotics over the past few months that the healthy bacteria in my gut over populated itself to attack the antibodies in the medicine and made me very, VERY sick. The good thing was, my pipes were re-connected. The bad thing was, I was using them 15 to 20 times a day, for two weeks. I couldn't be more than thirty seconds away from a toilet. I was wearing disposable underwear all the time. I was unable to eat because I knew that ten minutes later it would come right back out. During one desperate moment I told my husband I would do anything to have my stoma back. 

I started an antibiotic in the hospital, (Yes, more antibiotics) and the diarrhea did not improve. I returned to the hospital after a few days of non stop sickness to make sure that I wasn't dehydrated. They gave me some butt cream, a new antibiotic and sent me home. I disinfected the bathroom every time I went in, and washed my hands so frequently they were raw and bloody. I would have died before giving that infection to my husband or son. I drank as much Gatorade as I could and a few days later I felt a little bit better. 

I had to change my bandage every day. It was amazing to see how fast the wound healed. The Dr. did "purse" stitches and closed the wound on the inside because it was a "dirty" wound. He said it would heal from the inside out and it did. 

 Here is a glimpse of the wound healing.

I put scar cream on the wound every day. It is slowly softening up and gradually getting lighter. The bathroom is a constant battle. I have so much scar tissue in my perineum and rectum that the muscles don't function properly anymore. I have control but it is very difficult for me to have bowel movements. Sometimes it takes 45 minutes. It is painful. It might always be painful. I am, however, grateful that I was able to come out of these operations alive to watch my son grow. Each day is battle, but each day is also a gift. 

Here's the scar 4 months post-op

To be continued...

Narcotics, Migraines and Healing

In my last post I mentioned that I was taking 40 mg of Oxycontin every 12 hours. For those of you who are not familiar with narcotic medication, that is a fairly large dose. I had been on pain medicine for months on end, resulting in an abnormally high tolerance. I didn't even really feel loopy at all. I started seeing a psychologist for Post Postpartum PTSD and started taking a number a medications to help me function daily without being terrified of my body or my dreams. I had a different medication for every little thing. My night stand looked like this.

The first couple of weeks I spent in bed with pillows and pets surrounding me. My original CNA flaked out on me and we found a new nanny, Elizabeth, who quickly became my favorite person. She was so helpful and eager to learn. She came before the sun came up every single day. Her priority was making me comfortable and making sure I didn't have anything to worry about. She cared for Johnny, the house and pets. She basically took care of anything and everything that needed done so that I could heal. I tried to thank her numerous times, but, how do you thank someone for standing in for your life? She never made me feel like I was missing out on anything, even though she was taking care of everything. Elizabeth is truly a special woman who I cherish deeply.

Sookie and Lucy and Elizabeth

At first I had follow up appointments with Dr. O'Boyle every week for three weeks, then every 2 weeks. She intended to do a rectal exam at the first appointment but I was panicked and queasy so she spared me the pain. Her intention was to insert one finger into the rectum and one into the vagina and squeeze the perineum to asses the healing. She was finally able to complete this exam around the one month post op mark. It hurt. A LOT.

The good news was, I was healing.

Dr. O'Boyle was concerned that I would need help coming off of the pain medicine. Dependence of some sort had developed. If not mental, definitely physical dependence. I had to get off these medications before my Ileostomy reversal, because narcotics can cause constipation. The last thing I needed was to tear my healing would. 

I figured that I could come off the Oxycontin on my own. I dropped one pill off per week. The results were; Fevers, sweats, nausea and rebound migraines so bad I had to go to the ER for pain control. One of these migraines I remember in particular. Elizabeth took me to the ER and John stayed home with Johnny. We were there all night long. I was vomiting in the waiting area for hours on end, pressing on my stoma with the palm of my hand, with the hopes of not developing a hernia. (Too much abdominal activity can cause the stoma to rip from the attached tissue and more of the small bowel can detach, causing a hernia) Finally they took me back and, after waiting a few more hours, I had pain relief. I had about 4 Er migraine visits between Johnny's birth and my Ostomy reversal.

I continued dropping off one pill per week and visiting my Dr. in Bethesda and my Psychologist in Dumfries. Every week was pretty much the same. Lots of rest, lots of healing, lots of progress. Johnny kept growing.

The pain in my pelvic floor gradually lessened. I was able to take Flexeril (Muscle relaxer) and Motrin, and use heat to sooth the area. In some desperate cases, I would take some of the instant release Oxy that I had left over. I was able to manage it well. 

I was counting down to my ileostomy reversal. I had finally figured out how to apply the pouch so that it would last three or four days without leaking. Here's the process in detail.

• Start first thing in the morning, nothing to eat or drink until after.
• Cut the wafer to the size of the stoma and apply the paste seal to the wafer so that it is ready to apply 
• Use adhesive remover under the wafer until it separates from the skin. 
• Take a shower, wash all around the stoma and remove all residue
• Apply a few layers of clean gauze to the stoma while towel drying, in case any output leaks from the stoma.
• Apply skin barrier around stoma and where wafer will stick to skin
• Apply stoma powder to skin
• Press wafer to skin, use fingers to press around the stoma.
• Attach the bag and hold with palm for one minute to create a good seal.

It became a normal routine for me, but I loathed it. 

to be continued...

The repair down there. (funny videos after surgery)

The time came for me to have my vaginal reconstruction surgery. Needless to say, I was worried and uneasy about it. I was afraid that after all of the time that had passed, after going through the ileostomy, the wound would reopen and we would be set back again. 

My dad came to town for the surgery to help out. The morning of the operation, John brought me to Bethesda early, dad stayed home with Johnny and brought him later. (We left the house something like 5 am) I went through the pre-op screening process. I had blood drawn, I had my vitals taken and I was put in the pre-op area in a hospital bed to wait for the Drs. 

Me and dad

I had a team of four surgeons. Dr. O'boyle and Dr. Barbier were leading the team. They came and said hi and ran through the operation a little bit with me. It was going to take a few hours (it took 5) and I was going under general anesthesia. The anesthesiologist came around and let me know that I would be having a PCA button again for pain managament, along with oral drugs. That was a relief to hear. I held onto Johnny for a little while until they told me it was time.

Lights, Cold room, Action.

I don't remember waking up. I have little bits of hazy memories. I remember eating some delicious Kabobs and rice pudding....  Here are some funny videos my husband took of me coming to.





I I think was tired of being recorded. How embarrassing! (And awesome.) 

I had a catheter and the ostomy, so once again I was bed ridden for a couple of days. 3 I think. I have before and after pictures of my vaganus. I won't post them publicly but if you are curious for medical purposes, feel free to send me a message. The Drs did some amazing work. They left a drain hole in the middle of the wound that I was to poke lightly with a cotton swab to release any fluid that may be trapped. This was to aid in the healing, and to help keep the wound dry. It hurt like a mother!

I was home for about one night until the pain was so unbearable that I had my CNA drive me to Ft. Belvoir ER. They looked at the wound and decided to transfer me via ambulance to Bethesda. I developed a major migraine somewhere during the course of the day. The Drs at Belvoir had given me an injection of imitrex and all the IV pain meds they possibly could, but nothing helped. The ambulance ride was a horrific experience. My grandmother was in town for this hospital trip. She sat in the front with the driver and tried to keep me calm, someone sat in the back with me and I vomited the entire ride from a combination of motion sickness and pain.

Once I arrived back at Bethesda, I was shocked when one of my Surgeons took out my IV. She said the only way to control my pain was to get rid of IV medicine and control it with oral medicine. I wanted to punch her in her face. No quick relief. Luckily for her, (and for me) She was right and I didn't have to punch her. She did put a catheter back in, which helped a lot. It was almost impossible to pee because I was so swollen.

John was always in good spirits for me.

Johnny in my hospital bed.

Resting before going home.

The Drs told me that I could go home with the catheter in if I wanted to. I opted out. They gave me some sterile catheters to take home to use if I needed to. (I needed to) I was on 40 mg of Oxycontin twice a day. My pain was pretty well managed, I slept a lot.

to be continued...

Moving back home, adjusting to life with my ostomy and anticipating surgery again.

Leaving the hospital, I had so many feelings. Feelings of happiness, feelings of terror, feelings of deep sorrow. John and I had to manage my ileostomy and our newborn, on our own now. It was terrifying. I think I slept for a few days.

First moment we got home

I had a PICC line and this was what was left behind

 I was still pumping, trying to get my supply back up. I could only ever get four ounces at a time, and Johnny was drinking four to six ounces every three hours. My body couldn't keep up. With a heavy heart, I decided to comfort nurse and feed him formula to keep him full. The comfort nursing was more for me than for him anyway. The days went by something like this.

Pillows, i Pad, latched baby, dog

I was worried about Lucy being aggressive, as you can see, she is terrifying.

It was time to change the bag. I watched a few you tube videos and gathered my supplies and John and I teamed up on Sylvia. I stood in the bathtub. We were completely in the dark. We had no idea what to do. I had a blister forming around my stoma from the output staying on my skin. We would stick the wafer to my skin and hope for the best, only to wake in the night to the bag leaking all over the bed. Night after night. 

One night I stood in the bathtub while my husband cleaned my skin. Sylvia was spraying all over his hands. I had mucus coming from my vaganus. Lots and lots of mucus. I was terrified. I didn't know if it was normal or not. John called Dr. Oyekan, while I had a panic attack in the shower. (When I have a panic attack, I go into worst case scenario thinking. I think I am going to die. I can't breathe. My vision blurs. I violently shake and I feel like my insides are turning themselves out.) Eventually, Dr. O talked me down, and explained to me that just because my bowels weren't connected, didn't mean they weren't working. The mucus was normal, a good thing. I cried and cried. I had never felt so vulnerable, so disgusting, so ugly. I remember asking my husband "How can you love me? I can't even take care of myself! I am disgusting!" he replied with "I love you now more than ever, because you need me now more than ever." I don't know what I did to deserve him, but I am really glad I did it.

We had a follow up with Dr. Harp about a week after discharge and she suggested we see the stoma nurse at Walter Reid Bethesda. We made an appointment and luckily saw her the next day. She educated us on exactly how to dress the wound and how to keep the stoma clean. She taught us how to apply the wafer and bag so that I wouldn't have any leaks, she suggested which products to order. I felt like there was some light in the dark tunnel I was living in.

I was still on a steady stream of Roxycodone. I was taking Motrin, Zoloft, Ativan and Lunesta. I had so many medications, I had to install an app to keep track of when to take what. My diet was very tricky to follow also. I made a smoothie every morning with spinach, greek yogurt and frozen fruit so that I could get my vegetables in, but my blood panels showed that I was becoming anemic. It was really hard to eat healthily when I wasn't allowed to eat anything raw or fresh. 

One of my best friends, Justine, started fund raising for us while we were still in the hospital. She raised $5000 for us to pay for home health care. Thanks to all of our generous friends and friends of friends, we were able to hire a CNA to be at home with me while John was at work during the day. I still couldn't lift Johnny and I was still in an enormous amount of pain, so having the help was crucial. My days were pretty much the same, Lay around, feed the baby, mess with the ostomy, sleep.

Capt Shakir with Johnny

I was starting to feel like a mom.

John's mom came for Christmas. It was a nice, quiet event. We had a small tree and hung teeny little stockings.

We even got out of the house and made an appearance at my girl friend Chianna's Christmas party! (a very short appearance)

John was so glad to be home. He finally got to rest.

I was counting down the days until my best friend, Cedar to come visit. She is a mother of three, and I couldn't wait to learn from her and to just have an old FRIEND to hug. She came a couple of days before New Years eve.

Johnny loves his Aunt Cedar

One evening, we sat on my bed and I told her all that had happened so far. She was in shock and disbelief. I was still so heavily medicated that I didn't cry, I didn't really feel anything when I was talking to her. I was still in the stages of denial where I would push away memories and feelings.
Cedar wanted John and I to have a date night. She wanted to babysit. Our first date night since Johnny was born!

She styled my hair as I nursed. :)

The date

The date was actually so bad it was hilarious. We went to one of our favorite restaurants, Columbus Grille, a Portuguese restaurant, and apparently it was Portugal's New year or Independence or something. There was a lady singing and she sounded like a dying cat who had been hit by a truck and then lit on fire. There was a man playing an accordion. There were fat, drunk women in skin tight, spandex, mini-dresses stumbling around barefoot and children running in circles around tables. I thought that maybe I was high from my medicine, but, no. John experienced the same Circus.

I was only getting about 2 ounces of milk at this point. With Cedar and John's help, I decided that it was going to be OK if I stopped nursing. Every time I pumped and only got drops, I would get very sad and I would end up giving Johnny a bottle anyway.

This was the last time I nursed. I wept the entire time.

Time passed so slowly... I still had a Vagnus and an Ostomy. I wanted to fast forward to surgery and get it over with. I felt selfish in thinking that way. I should have just been enjoying every second with my newborn because "Time goes so fast, Cherish every moment", as every person I knew and their dog told me. I couldn't enjoy the time like I deserved to. I was certainly better off than I was in November, but I was still in pretty bad shape. I tried my best to take it day by day.

Dr. Oyekan referred me to one of his colleagues, Dr. Amy O'boyle at Walter Reid Bethesda. He was unavailable to do the vaginal reconstruction until March and she thought I was ready by the end of January. I was uneasy about letting a new team operate on me, but Dr. Oyekan assured me that she was a better option than even he was. I met with her and her team and scheduled surgery for Jan 28th. 

to be continued.

An Ileosto-what-y? Graphic pictures.

Bubbles came to visit and to meet her great grand son. It was nice to have another set of hands to help John. She was very worried about me, she kept asking if I was sure that I was in the right hospital, with the right team. I told her I wasn't sure If I was on planet earth or if the moon wasn't really made of cheese.

Proud great grandma Bubbles

My husband was truly doing everything, He was changing all of the diapers, he was bathing Johnny, walking around with him, rocking him to sleep, even helping latch him to my breast when I was asleep or drugged out.

its funny seeing Johnny so small

My open wound was not healing. It wasn't a suprise to anyone either. It wasnt possible to keep it clean. No matter how often Dr. O washed the would with saline, packed it and put ointment on it, stool would pass through and it would become dirty again. 

Cue Dr. Cristie Harp. She was the head of the Colorectal team at Ft. Belvoir. One of my nurses, Captain Richardson, had suggested to me and to Dr. O. that an Ileostomy be performed. I had no idea what this was. She explained that it was a diversion of the intestines so that stool would not pass through my wound and it would be able to stay clean and heal. I was so ready. I was begging for that ileostomy!

A few days went by, Dr. O. had to be convinced. He wasn't sure that I undertstood how serious of an operation this actually was. (I wasn't sure what my middle name was) In the days before surgery, I had some visitors. 

I don't remember this. 

Lorena came to visit too, she rubbed my feet. I don't have a picture of that. I do have a picture of this though.

I even went for a little stroll (finally)

this is so embarassing

This time, it was absolutely necessary for me to be under general anesthesia. They were performing major abdominal surgery. For those of you who don't know, an Ileostomy is a surgical opening constructed by bringing the end or loop (the ileum) out onto the surface of the skin. Intestinal waste passes out of the ileostomy and is collected in an external pouch (or poop bag as I liked to call it).

 I was put on a "nothing per oral, or NPO diet for three days prior to surgery. They gave me some medicine to clear out my digestive system. Basically, I had bad diahhrea for days on end and Mrs. Loving was cleaning me up constantly. 

The starvation caused my milk supply to dwindle. We started to supplement formula. This devastated me. I had planned on nursing exclusively for Johnny's first year. I was unable to hold my baby, I was unable to carry him, change him, bathe him and now I was physically uncapable of feeding him. That was my ONLY job and I couldn't do it. I felt like a failure as a woman and as a mother. (I am actually weeping as I type this.) I had so many conversations with Capt Artinsia Shakir about this. She was my rock. She was the bright spot in my days and she gave me hope and courage. I don't know what it was about her, but she gave me the power to push through when I wanted to give up. I was suffering from such deep depression that I could barely look at Johnny and I rarely wanted to hold him. I mourn the loss of breast feeding like I would mourn the loss of a grandparent. When I think back on the times at home, before my wound opened up and my milk sprayed in the shower, my heart bleeds a little. I have physical pain in my chest and a ball in my throat. Those few days I had at home were the best days of my life and I was robbed of that time and I am so angry about it. I would give anything to go back there, but I can't. The purpose of this writing is to help me feel these feelings so that I can find peace and accept what happened and move on, but all I want to do is rewind time. 

 Lights, cold room, anesthesia.

Waking up this time was more than traumatic. There was someone pressing hard on my abdomen. She was trying to attatch the bag to the wafer (The bag holds the waste, the wafer adheres to the skin). I woke up screaming, thinking the last few weeks were a nightmare only to realize the nightmare had only just began. The following pictures are graphic.

Warning.

Still want to see?

Ok, you've been warned,

Here they are.

You sure?

Ok.

This is what I saw when I woke up.

Here she is (Sylvia the Stoma)

The bar was in place for about a week, to hold the stoma up so that it could heal to the skin. Keeping the wafer from leaking was super difficult. There wasn't a single nurse that specialized in stoma care in the hospital. We were learning together. The day after surgery, I developed an intestinal blockage. I had to drink what seemed like a gallon of contrast fluid within an hour (I chugged it because it tasted so bad that I just wanted to get it over with) and then about an hour later they took me down to radiology for abdominal xray. They determined the blockage was due to swelling so they placed a catheter into the stoma and into small intestine so that the output (medical term for liquid intestinal drainage, stool) could pass through and into the ostomy bag.

Stoma catheter

I would feel a really strong abdominal cramp, and then a gush of output. After a few hours, my intestines pushed the catheter out. I had to have it put back in. Someone came in with a new catheter and put it back in, and watching him do it made me throw up. He told me to keep pushing it back in myself and not to let it come all the way out. He gave me Valium because I had a panic attack when he was touching me. 

I had another spinal block done to help with my pain. I was once again, bed ridden. Nurses would empty my ostomy bag collect my urine from my catheter bag. They would sponge bathe me and help me brush my teeth. Mom came to visit around Thanksgiving. 

So did Michelle and Alicia

Michelle even shaved my legs for me

Sarah Gish  brought my Doghter, Lucy to visit! 

I spent my days still trying to keep whatever milk supply I had left. I was on a liquid diet for almost a week and a half. After that, I was allowed a no residue, low fiber diet. Ostomy diets are very hard to follow. The foods need to be easily digestible and raw fruits and vegetables are not allowed. By the time I was able to come off the liquid diet I was 20 lbs lighter than pre pregnancy weight. 

Another visiter

Yvonne and Gabriel visited also.

The rest of the time spent was keeping my pain in control and trying to regulate my ostomy output. I would receive a bolus of iv fluid equal to the amount of output I had each day. A Normal amount is about 500-800 cc a day. I was having anywhere from 1000 to 1700 cc a day. 

Each morning at 4:30 am I was awakened to go down to xray to check on the status of the blockage. All through the night the nurses had to empty my bag, about every 45 minutes. I didn't sleep much. I just kind of lay there in a drugged fog.

This was to prevent a pneumonia.

Once the anti depressants got into my system I started to be able to enjoy Johnny more. I would cuddle him not just because he had to eat, but because I wanted to. 

I was in the hospital for 3 weeks. I finally was discharged on December 5th. Capt Shakir and Capt Richardson loaded me up with supplies and medicine and helped pack me up. I felt like I was lost. I was actually comfortable there, I wasn't ready to go home. I was terrified to leave. I wasn't capable of taking care of my baby, how would I be able to care for my self? My ostomy? My pain?

waiting for discharge papers with Capt. Richardson (left) and Nurse Androta

to be continued.