On the mend

I can finally see light at the end of the tunnel. My stomach is healing. My family and I joke about it looking like the evil eye. Scars are scars. They don't bother me a bit. I will still rock a two piece at the beach :) 

Graduate school starts in September. My life will be very busy at that point. I will be working 30 hours a week, going to school full time, and doing a 15 hour a week internship. My health better be in tip top shape by then! Here's a picture of me representing UConn, picking up my school ID. This is all for now. Update soon to come!

No More Cramping! No More Cramping!

I went back to work on Wednesday June 27, 2012 for 4 hours a day. Those 4 hours were rough! My job has me out and about driving clients around all day. I stayed in the office. I had no energy to do otherwise. On Tuesday July 3, I went to work for 4 hours but didn't work the entire time. At about 2pm or so, I started getting hungry and the cramping pain were unbearable. I was on my way to pick up a client and decided to turn around because the pain was so bad. I sat in the parking lot trying to wait it out but it only got worse. I called my boss who came downstairs and wanted to call an ambulance. The hospital my surgeon is at is only 5-10 minutes down the road. I had one of my co-workers drive me to the hospital. I called my surgeon to let him know I was coming. They told me to go in through the ER and get an X-ray done immediately. 

I went to the ER and waited for about 30 minutes before they sent me to get an X-ray. No surprise here. The X-ray showed that my small intestine was extremely distended and about twice the size it should be. Same as last time. They immediately got me a room on Bliss 8, the floor I always go to. I was in so much pain and just wanted it to go away. My brother met me at the ER and stayed with me that evening. I got my own room which was such a great thing. I finally got situated with an IV put in and pain medication and fluids flowing in. 

The next day after losing a few more pounds. I was currently 96 lbs. My surgeon decided to put a PICC line in. The PICC line would allow me to get multiple liquids and nutrition at once. It can't go through a regular IV because it would be extremely painful. I have never had one of these before and it was scary.

The IV therapy nurse comes up and has to sterilize the entire area around you. She put on scrubs and covered me with a sterile sheet. She cleaned the entire area around me and scrubbed my right arm where the PICC line would go in. She uses an ultrasound machine to find a deep, large vessel in the upper arm. The nurse inserts a long, slender, small, flexible tube into a peripheral vein and advances it until the tip settles in a large vein in the chest near the heart. I thankfully did not feel it traveling through my chest. I only felt the initial insertion. An X-ray is needed right after it is put in to make sure the tube has not entered the heart. With the PICC line in, I was able to get fats, proteins, liquids, and other nutrients through the IV. This would prevent me from losing any more weight and prevent nutrition depletion. 

The cramping didn't go away so they put me on a medication called Reglan. Reglan is used to treat certain conditions of the intestines and stomach. The Reglan would help my intestine move the gas through allowing my intestine to relax and move more comfortably. The Reglan has been a lifesaver. I am still on it but instead of taking 3 a day like I was, I am down to 1 pill a day. Unfortunately this medication can cause serious side affects such as unusual face movements that won't be able to be controlled and may never go away, even after use of medication has ended. Hopefully the medication will help enough that I won't have to be on it much longer. It has been a blessing so far. I have had cramps maybe twice since I came home from the hospital on July 8. 

Goodbye Stan

Well it has been a long time since I've updated this. A lot has happened. Last time I wrote on here, I just had the second attempt to fix the fistula. Well it WORKED! I had a pouch test a few weeks later and it was healed. I cried I was so happy. 

A lot has happened since then. My surgeon and I finally made an appointment for "takedown". May 31st, 2012 I would have my ostomy reversed. What a great feeling. Not much happened between March and May except for turning 25. Can't believe I've been dealing with colitis and all these surgeries since I was 22. My life has changed drastically in the past 3 years. I had a great birthday and was able to be thankful for this upcoming surgery.

May 31st came pretty quick. Surgery was set for the late morning. Both parents took me like always. Surgery was a few hours later than planned because my surgeon was with another patient. I sat in the OR waiting room under the Bear Paw blanket. It's a heated blanket and it feels amazing. As I have mentioned before, I have had a female anesthesiologist for the majority of my surgeries except for the one in February. I was secretly hoping it would be her again. Jen is her name and she doesn't look much older than me. We always seem to have the same color nail polish on for each surgery. Weird, I know. All of a sudden, I hear a shriek and Jen comes running over giving me a huge hug. She is so happy for me that this will finally be the end. She doesn't bother going over everything because I know the routine already. And once again, our nails are matching (with no nail polish on). 

Jen gets me one of those flattering operating caps and wheels me down. We chit chat on the way down there and the fun begins all over again. A million people are in the operating room, running around like always. I ask to see my surgeon before they put me under. They have me go from the gurney to the operating table and adjust my gown. They strap my arms down again and put the oxygen mask over my mouth. I hold my surgeons hand for a feeling of safety and slowly I'm out. 

A few hours later, I wake up in the recovery room with my parents. Surgery was a success with no issues. Woohoo! From this point on, I don't remember much. They must have taken me up to my usual spot in Hartford Hospital, Bliss 8. I know all the nurses by heart now. Not really a good thing. Well Stan is gone. 

 In replace of him are 8 staples on the right side of my abdomen. Painful staples. I don't remember in being too much pain because of all the pain medication. My surgery was on a Wednesday and I left on a Tuesday, almost a week later. I was slowly incorporating soft foods into my diet. I was going to the bathroom out of my butt again! Weird feeling. It was pretty much diarrhea but I can deal with that. Doctors will tell you to where a pad at night after takedown because when we relax our muscles, people usually end up having a bowel movement. This happens because we haven't been using our sphincter muscles for a certain amount of time. This only happened to me once and that was in the hospital and it wasn't a lot. It hasn't happened since (keeping my fingers crossed).


Recovery at home is where the fun begins. The first couple days were rough. I was very sore and having a hard time eating foods. A week after I came home, on June 12, I went to see my surgeon so he could remove the staples. That sucked. Of course I'm a baby and was freaking out about it. It hurt. It felt like a sharp pinch and a tug. The APRN took out all 8 right there. I was not a happy camper. The next few days drastically went down hill. I kept my diet simple but I started having these incredibly painful cramping in my stomach. So painful I was taking 2-3 pills of my pain medication at once to subside it. Didn't work very well. The cramping got so bad, I was barely eating anything and couldn't even get out of bed. Laying down was the only time I felt okay. 

Well a day or so later, that all changed too and the cramps got even worse to the point where it was painful laying in bed too. The cramps would come about every 3-5 minutes and last only a few seconds but they were so painful. I thought I was dying. I felt like this is what I would picture contractions feeling like when a woman is pregnant. It was insane. I called my surgeon's office and they set up an appointment on June 18th to take a look. The APRN sent me down to radiology to get an xray done. The xray showed bloating and dilation in my abdomen. She said I looked about 6 months pregnant. She thought it was probably gas and that I should come by the next morning to get a CAT-SCAN to see if it's anything more serious. 

Having a CAT-SCAN sucks. I had to drink this nasty liquid to help things show better. I felt awful on the drive to the hospital to get the test. I was in so much pain. They put an IV in my left hand in a tiny vein (since that was the only one they could find) and pumped me with some stuff that makes you tingly and makes you feel like you're peeing your pants. It was so weird. It made me feel kind of sick too. Not fun. Hope I never have to get one of those again. The APRN wanted to see me after and go over the results. As I'm waiting for her with my brother (who kindly took me to this appointment), I was in excruciating pain. I was crying and the nurse came in the waiting area and told me to go lay down in one of their rooms. So I lay down and the pain is pretty unbearable at this point. The APRN finally comes in and takes one look at me and says "We're admitting you". She said if I'm in this much pain and crying then something is going on and I need to be admitted. I started crying hysterically at this point. I had a feeling this might happen but I DIDN'T want to go back in the hospital. She also said something about an NG tube going in my nose if I don't get better. Well that freaked me out even more. Hell if they're going to stick some tube down my nose while I'm awake. She called Bliss 8 and they had one room left. She gave me a big hug and got me a wheelchair and I was off. My brother wheeled me and made me laugh a good part of the way there. He's awesome. 

I get in the room with a roommate (bummer) and refuse to get out of the wheelchair. Sitting in the bed made it real for me and I didn't want to get out of the wheelchair. Finally, my brother talked me into it. My mom came not too long after and we waited for an IV nurse to come up so I could get pain meds. The nurses couldn't find a good vein to put the IV in so they called in the experts. My brother left to go to work and my mom stayed with me. The IV nurse finally came and I got some pain meds. I soon felt pretty good. The cramping had subsided for the time being. 

The next few hours pretty much sucked. My doctors came by and said that the CAT-SCAN showed that I was distended and extremely "bloated". They put me on a no food no liquid diet until things calmed down. I couldn't even sip anything. They didn't want me swallowing anything. I was on complete bowel rest. I was able to suck on the sponges to keep my mouth wet but that was it. I was getting liquids and nutrition through the IV and an antibiotic just in case. I was hungry but didn't feel too bad. Doctors came in to push on my belly. They think I suffered a partial obstruction caused from the scar tissue from my FIRST ileostomy. The scar tissue gets in the way of food passing through the small intestine and therefore causes a partial obstruction.They kept asking me if I felt nauseous and/or if I had been throwing up at all. If I do then that's when the NG tube would have to go down my nose into my chest to suck everything out. Thank God I never had any issues with throwing up. 

I did dry heave twice but I think that was from my pain medication. As soon as they pumped me through the IV, not even ten minutes later, I was dry heaving and then I would feel fine. Definitely scared me though. I did not want that tube. The doctors didn't seem concerned about it. I did a lot of walking the halls to keep my bowels moving. It was hard at first but got easier. I was in the hospital for 4 days this time. By the second/third day, I felt great. I had no cramping and I was walking upright again. The doctors wanted to get me a pouch test to check my  pouch and the fistula and see how my small intestine looked. Everything looked great. The fistula was still gone, the pouch has no leaks, and there was no sign of a partial obstruction anymore. Good News.

Now I was allowed to slowly eat soft solid foods to see how my body handled it. I had some initial cramping at first but not too bad. I was still going to the bathroom as I was before. No issues there. I was being released on Friday morning. I was told to stick to a low residue low fiber diet and if the cramping returned then immediately stop eating and push liquids. If I get to the point where I can't handle the liquids then I need to go to the hospital immediately. There is nothing to prevent a partial obstruction and I didn't do anything wrong. These things just happen apparently. Now I'm pretty terrified that it'll happen at home again.

It has been a week since I came out of the hospital. I returned to work on Wednesday for 4 hours a day. Exhausting. I'm still getting cramping. I notice they are more severe when I feel hungry. So weird. My doctor said having cramps like this aren't that common but I'm hoping it's just my body getting used to everything and that it will soon go away. At night it has been the worst. Not sure why. I'm finally passing gas. I wasn't able to do that in the hospital unless I went to the bathroom and had a BM. My stomach bothers me during the day and work has been a tough adjustment. I'm just taking it day by day and praying that the pain goes away. I frequently massage my stomach in case something small gets stuck. 

I'm tired emotionally, physically, mentally. This should have been my final surgery and I hope I don't have anymore complications. This will be something I'll have to pay attention to my whole life and make sure I'm eating the right things. Now I just have to gain about 25 more pounds. Lost 10 more pounds through the takedown surgery and hospital stay after. I'm all skin and bones again. I know it'll come back but it needs to hurry up. :)