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. :)

A little ranting and raving

Being out on medical leave has given me a lot of time to think. To think about a lot of things. I had surgery February 13. It was an outpatient procedure. I was scheduled for 2pm and didn't go in until 4pm.  My surgeon had another procedure to attend to before he did mine. Other than being starving and impatient, the wait wasn't too bad, having both my parents with me to keep me company. It was the regular procedure of poking and prodding, trying to find an easy entry way for the IV. That's usually the worst part. 

Finally, they take me down and I talk to both surgeons, eager to get this done with. They put me under a nice heated blanket and wheel me down. I was a little disappointed because I had previously requested an anesthesiologist I have had previous times and formed somewhat of a friendship with her. Unfortunately, she wasn't working this day. The man I had though was welcoming and just as kind. Again, I went through the same procedure of propping myself on the operating table and adjusting my gown so they can get easier access to my body. I say hello to my surgeon again and chat it up with the numerous people that are running around the room. I like to make small talk and even a few jokes to keep the air light. It makes me feel better to, sort of a distraction. They lay my arms out as if I'm about to take flight and insert some medicine in my IV. They tell me I'll be relaxed real soon. I remember talking and then slowing down and everything turning fuzzy really quickly. Next thing I know, I'm waking up in the recovery room. 

Recovery right when I wake up isn't as bad as I remember the last one being. I was in immediate pain last time and I don't feel much of anything now. My surgeon comes over to talk to me to make sure I'm feeling okay. I remember grabbing his hand to hold on to. Not sure if I was scared or nervous but I know I wasn't quite "out of it" yet. He reassures me that everything went great during surgery. My parents soon come down and being to nurse me back to help. I sip on some ginger ale and eat some saltines, however the nurses don't let me eat a lot in fear of getting sick from the anesthesia. 

I arrive home around 7pm with my parents. They immediately help me to my room and my recuperation begins. My brother comes home later to keep me company. My dog knows instantly that I'm in pain and huddles up in my armpit. This is the only time she ever snuggles with me. Weird. The pain still isn't too bad. They did dose me up with a bunch of pain medication before I left so maybe that's why I wasn't in any pain. Regardless, I didn't feel as bad as I thought I would. The next few days are pretty much the same. I'm taking the pain medication every few hours to keep up with the pain but then I only take it when I absolutely need it which isn't too often. I was more sore than in actual pain. 

Not much changes within the next week. I gradually start getting out of the house and moving around. I decide to start taking walks to keep my blood pumping. Sitting down and being comfortable is still an obstacle. I constantly have a pillow with me. I realized I should have bough a doughnut to sit in but the pillow works just fine. I made follow up appointments with both surgeons in the middle to end of March.

During this time off, I obviously have a lot of time to think and over-analyze things in my case. I am a firm believe of not dwelling on the past and letting it be what it is but I have a hard time when it comes to the last year. I relive the hospital stay and the pain and the ultimate surgery decision I had to make. It feels so fresh in my memory and it's hard to push it out. To get it out of my head, I quickly think of where I am today which is pain free and healthy. It still sticks in my head what a hard year my family and I have had and what hard adjustment I have had to make and still making. 

There's a woman about my age who advocates for the awareness of people with ostomies and living with one. I envy her because she continues life like nothing happened and she sees it as a blessing. Don't get me wrong, I believe that it was a blessing for me to or else I may not be here or I might be worse off than I was but I had a hard time embracing this ostomy thing like she has. Her story is different than mine and she had her ostomy much longer than I have and she didn't have a choice in the matter but it still bothers me. I feel guilty of the way I feel sometimes, that I should suck it up and stop fussing over it. 

Someone asked me the other day, "If this surgery fails, will you consider keeping the ostomy forever?" The question hit me like a ton of bricks. I have considered the answer to this many times before but never for long. I usually quickly block it out of my head and think of something else. I do this because I don't want to have to think about it. I don't want it to be an option or something that I'd have to consider at some point. If this surgery fails, I have two more possible surgeries. If they both fail, then I will most likely have my ostomy forever, not by choice though. For over a year now, I have been told that having an ostomy will be temporary and I am still being told the same answer. Nothing has changed. My doctors and surgeons believe that something will work and I will be able to have the reversal surgery. 

My ostomy saved my life. It made me healthier again and pain free. I am forever grateful for having the surgery but would I choose to have this for the rest of my life? The answer is no. I don't like having an ostomy. I'm sure many people who do agree with me but don't have a choice. The fact that I have a choice and have been told this entire time that it won't be forever, I haven't allowed myself to accept it. I am fairly used to it by now but I'm not happy with it. I don't feel myself. Many people with ostomies live a completely normal life, eat what they want, do what they want, and wear what they want. Unfortunately, I'm not there yet. I avoid many foods that are gassy or cause more liquid output. I eat a lot of bananas to thicken the output so I don't have to go to the bathroom and empty as often. I paid a lot of attention to food when I had colitis and I still do. I know what bothers me and what doesn't. 

As for doing what I want and wearing what I want, I don't. I don't go out as much because I feel like I'm always going to the bathroom or checking my bag on it's fullness. I don't want it protruding from my clothing when it gets full. It feels like an obsession almost. I'm constantly touching the bag, making sure I don't leak or checking the fullness. I can't leave it alone. My family is beyond annoyed with me at this point. They look at me or tell me to leave it alone. I understand where they're coming from but I can't help it. They don't know what it's like. I don't touch it and fuss with it in public or anything. It's only at home, in the comfort of my own space. Clothes are such a pain in the ass. I have so many pairs of jeans that I don't wear. A lot still has to do with my weight. I still have 20 more pounds to go and it's frustrating that the weight isn't coming on fast enough. It's already been a year. I started mixing in whey protein with milk and drinking it everyday to get muscle at least. 

My hair broke and fell out from all the medications that my hair is still growing back and getting back to normal. I got sidetracked. Back to the clothes. If I go out somewhere nice or with friends, I'll wear jeans and I'll wear spandex shorts or something underneath to fold the bag in so you can't see it but then if it gets full, it looks like a big tumor on the top of my thigh. I just don't feel comfortable like that. If I'm not touching it, I am thinking about it whether I want to or not. Sounds sick, I agree. But it's gotten a lot better trust me when I say that. I'm usually okay at work because I wear loose drawstring pants that aren't restricting. 

So I'm rambling and doing the poor me routine. Think I can afford to do it once awhile. I make having an ostomy seem horrible. It's really not. It's completely manageable and you DO get used to it over time. I have the option of hopefully getting it removed and I look forward to that day. 

I go back to work Monday. I'm nervous like always after being out for a few weeks on medical leave. It's always strange getting back into the swing of things but hopefully I'll get back in it soon enough.

Oh yeah, I am forcing myself to go to the gym tomorrow to sign up and get a tour. I need to start exercising. Obviously not to lose weight but to gain my strength back. My body has gone through hell this past year and the fun isn't over yet so I need to gain some strength and energy back. Wish me luck!

Losing tracks of surgery numbers

Okay well tomorrow will be my one year anniversary of going to the ER. I remember this day like it was yesterday. Last year it was a Tuesday and I was off from work except for a 2 hour staff meeting. I remember being really sick Sunday at work and on my day off on Monday. I went to my staff meeting feeling really sick and in a lot of stomach pain. I was in the bathroom more than in the meeting. My co-workers encouraged me to go to the ER because I didn't feel good nor did I look all that great either. I went home and my parents drove me right away.

So I spent the next 3 weeks in the hospital and finally had the surgery that saved my life. I can't believe it's already been a year. I feel like it was just yesterday that I was making life changing decisions. I am preparing for my 6th surgery this upcoming Monday to attempt to fix the fistula AGAIN. I have requested a urogynocologist to come in and assist my surgeon. Between the two of them, they better get this thing fixed. 

Goodbye 2011, Hello New Life

It's been almost a year since I went to the ER. When I look back at the past year, I am thankful that I am alive. I was fighting for my life and now I have a second chance. This time last year I was so sick, more so than I thought. I was on many medications that would have caused my body more damage long term. I was in constant stomach pain. Everything I ate caused me severe pain and I was becoming weak on a daily basis. 

I strongly believe that everything happens for a reason and we only go through things that we can handle. It has been a very long road. I have had major surgeries. They haven't all been successful and I never thought I'd be going on my sixth surgery knowing there's even more to come. If you had asked me a year ago where I'd be, I wouldn't have thought this. Although it's been tough, I am happy to be here and to be HEALTHY!