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!

Third Opinion

I had an appointment at Lahey Clinic in Burlington, MA in January. Last week, they called and asked if I could come in today. Perfect timing.

I saw my surgeon last week after I went to Boston. He did not recommend doing the gracilis flap surgery. He said he would CONSIDER it for a last option. He said that he would a similar surgery to the first one he did but he would go up through my vagina and try that way. My surgeon said that he was very interested in what the female surgeon at Lahey Clinic was going to say-he values her opinion greatly.

The female surgeon I met with was very nice. She had a great personality. She said she knew my surgeon and his partners and that she had respect for them and thought highly of them and their work. She went straight to work. She said she already read my chart and looked at my pouch studies. She asked me a few questions and said that she wanted to do an exam herself and see the fistula on camera.

I went into the exam room and the next 10 minutes were horrible. I won't give details but fingers and scopes were going in places I didn't want them to. It was very painful and uncomfortable but I knew it had to be done. After the exam, she spoke with my parents and I about her findings and options for surgery.

She said that she would recommend doing a trans-perineum repair of the rectovaginal fistula. It's hard to explain but she wouldn't enter through the anus or vagina. She would make an incision right on top of the fistula and repair it that way somehow. She said a 1-2 day hospital stay and about 4-6 week recovery. (Not bad). She continued to explain and draw a picture of it. It's hard to explain for others to understand. She was worried that if they did the surgery through the vagina that it would cause scar tissue and issues with sex and pregnancy later on in life. 

She said that this surgery is about a 75% success rate. She said that she would send my surgeon the paperwork and call him to discuss it. She seemed very confident in this surgery and that it would work. Of course, there is a chance it wouldn't. It was nice to hear a female perspective on these surgeries. I called my surgeon and made an appointment to see him after New Years so that we can talk about the next move and see if he does these surgeries often. 

Happy Holidays!

Second Opinion

I went to Boston on Thursday to check out a surgeon at the Brigham and Women's Hospital. He specializes in colorectal surgeries. Other than waiting an hour to see him, the appointment went very well.

He is very friendly and sociable. He read through my thick files and came to the conclusion that he wouldn't have done anything different than what my surgeon here did. That was reassuring to hear. He was able to explain everything I already had done in a way I could better understand.

There was not one thing that he would have done differently to repair the fistula. If I decided to go to him for the next surgery, he explained how he would do it. Or how the plastic surgeon would do it.

He would do a gracilis flap which requires a plastic surgeon to pretty much do the whole surgery. This is where they take muscle from my upper leg and stick it between my anus and vagina to heal the fistula that way. He did an exam on me and felt where the fistula was and agreed that it is pretty small.

He said that the plastic surgeons do one of these surgeries at least once a week if not more. They mostly do it for people who have colon cancer, but it is the same procedure.

He stated that this surgery was about 75% chance that it would work and heal the fistula. If for some reason it didn't work then they could possibly try again later on or I would have to consider having the ileostomy permanent. Not that I want to think about that right now, but it was good to hear all the options and possibilities.

There are some risks associated with doing a gracilis flap, as there is to any surgery. It is worth the risks for me. Now I meet with my surgeon here on Tuesday to see what his take on everything is and what he would do for a Plan B. I will mention what the surgeon in Boston said and figure out how many of these surgeries the plastic surgeons here do. That might be the answer to where I have my next surgery. I would ideally like to stay local but going to Boston is definitely something to consider.

Back to bad news...

So my last blog was good news and now I'm writing about bad news. I was scheduled for my takedown surgery to get the bag removed for November 21st. I had a pouch study last Thursday to confirm that the fistula had been healed.

My dad went with me to my pouch study for support. I was very nervous but pretty confident and excited that surgery was coming up. I had already taken the time off work and figured everything out. Well, as I was getting the test done, I started to have pain and realized this shouldn't be happening. Then I feel the liquid come out of my vagina. Greaaaaat. I knew right then and there that the fistula had not healed. I confirmed with the radiologist and he said that there is still an opening. I began crying and couldn't hold it in. I couldn't believe it!!

I was a wreck for the remainder of the day. I cried a lot and kept to myself. My parents were just as disappointed as I was and tried their best to be there for me. I immediately called my surgeon but he was on vacation and the APRN was out with the flu. So now I had none of my doctors to talk to. That just made me more mad. I wasn't able to talk to anyone until today (Tuesday). The weekend sucked because it was all I could think about. I had it set in my mind that I would be bag free for Thanksgiving and now I wasn't going to be.

So today I saw my surgeon. I left work early to meet with him. My parents met me there. My surgeon didn't have a chance to compare x-rays so he wasn't sure if it was the same fistula or a different one. He assumed it was the original one though. He was just as shocked as we were. He said that he and his partner were very confident when they did the repair surgery and he assumed it would have been healed and everything would work out. He said that it is too early to do another surgery because the tissue hasn't healed yet. He recommended that I come back in about a month to schedule another pouch test to see if it healed over time or see if we need to do another surgery.

When they repaired the fistula this time, they went up through my anus. He said that if they have to do another surgery, they might decide to go through my vagina and repair it that way and maybe have a plastic surgeon come in to move muscle around to help repair it as well. He said we would talk more about that when the time came.

My dad let him know that we were seeing a surgeon in Boston for a second opinion. My surgeon thought that was a good idea and recommended it. He said if he was in our situation, he would do the same thing. He genuinely felt sorry that this was happening to me and that there would be a solution soon. He gave us another surgeon in Boston that he recommended. He gave me her phone number to call and make an appointment.

It was nice to have the help from the surgeon and to know that he was cooperative in having second opinions. It made me feel good that he was on the same page as us and that he was willing to help in any way that he could. I am very confident in my surgeon and I don't blame him for the bump in the road. I just want answers. I mean, we all knew that this wasn't a 100% guarantee that it would heal. We were just very confident that it would because it is such a small opening.

So as of now, I just need to call the surgeon he recommended and make an appointment for the same day as the other one in Boston or at least the day after. Here is where I continue my waiting game. There is still light at the end of the tunnel, it's just a very long and windy tunnel.

Good News...Finally!

I can't ask for a better support network. I am walking in the Take Steps Be Heard walk for Crohn's and Colitis in October. Many of my friends have donated and some are even walking in the walk with me. Very exciting! My surgeon even donated. That completely made my night!

I saw my surgeon today for a follow up appointment from the surgery I had last week. He took a look at my bottom to make sure there was no infection and there wasn't. Thank God. The plan from here is to meet back with him at the end of October and make a date for a pouch study. Reminder of what a pouch study is-they stick a mini camera up your butt that fills you up with fluid to see if the j-pouch leaks and in my case, to see if the fistula has healed or not. That test will be within the first week of November. If all looks good, surgery to have the reversal again and the bag REMOVED will be before Thanksgiving.

I tried to hide my excitement because I don't want to get too excited and get my hopes up for this surgery. I'm definitely nervous because of what happened last time but this will be it for me, I hope.

I go back to work Monday part time for a little bit then back to full time. I'm excited to have a second chance at life and a second chance to live bag free.

Reccouperating

The fistula repair surgery was this morning at 7:45am. My dad took me and we arrived at the hospital at about 6:15am. Too damn early for me. Let's just say I got no sleep last night. I went through the usual procedures before the surgery. Sadly, I've become a pro at this and know what to expect.

I became a chatter box with my surgeon in the operating room. Must have been the nerves. They decided to put me out on a separate stretcher and then once I was asleep, they were going to flip me over on my stomach and put my head in this squishy foam thing. One second, I'm chatting with my surgeon stating I was getting nervous and then I was out. I woke up an hour or so later in the recovery room having a hard time breathing. I was gasping for air. The nurse put an oxygen mask over my mouth and then gave me something to help clear my throat and lungs. It was much better after that. I was so out of it at that point though. I couldn't even open my eyes...

I saw my surgeon shortly after. He was blurry along with everything else; I was still waking up from the anesthesia. They really put me out this time, breathing tube and all. My throat was sore and I was just so out of it. My surgeon explained to me that everything went well and he was very pleased. He said that we'd wait about 2 months before having another pouch study. Then we can go from there to see about the reversal surgery again. So if things went well, I could have the reversal before Christmas.

Once I finally came back to reality, I was in so much pain. The surgery was done through my anus and I have a huge gauze shoved up there covered in tape to keep it in place. Feels like I'm wearing a gigantic diaper. I was in the recovery room till about noon then I was able to be discharged. I was hungry, in a lot of pain and still quite out of it. I felt sick to my stomach and my throat was killing me.

Now I'm home and obviously "with it" now to be writing in my blog. My butt is in bad shape. I have to keep it taped up until tomorrow. So painful. I can't lay on my back because it hurts to bad so I'm laying on my sides but then my hips are starting to really hurt and my legs feel tingly...fun fun. Stupid pain medication isn't working and I'm waddling around the house like a freaking penguin.

At least I'm starting to see the light at the end of the tunnel. What a great Christmas present it would be to get this bag off me and get this all behind me...

Fistula finding

Well I just had my fourth procedure on Thursday. I had a rectal exam under anesthia. My surgeon wanted to take a look and find the fistula and see how big or small it is before he does surgery. The procedure took about an hour and he told me that the pouch and everything look healed. He found the fistula and said that it was small. He put in a drain to find the fistula when he does surgery. Not exactly sure when that will be. I feel okay besides my butt being sore. I'm meeting with my surgeon on Tuesday to discuss what surgery will entail and hopefully set a date.

Surgery number five here we come...

Results are in!

Well my gut feeling was correct unfortunately. My fistula has not healed...at all. It's about an inch wide. The doctor who performed the test said he didn't see much of a difference since the previous test. He also said he didn't think waiting two more months or however long would make a difference.

I pretty much knew deep down that it hadn't healed, my body was pretty clear about this...but I didn't want to admit it to myself until I saw the actual proof. Hearing the doctor say that the liquid was coming out of my vagina and feeling the pain of it filling up with the liquid hit me like a ton of bricks. I started crying and the doctor attempted to "console" me with kind words and reassurance that it can be easily fixed. I don't care if it can be easily fixed, I'm pissed off and can't believe that this stupid thing hasn't healed yet.

I leave and meet my mom in the waiting room and she already knows the answer by seeing my tears. I didn't give a shit that other people were looking at me. Nothing else was around me at that moment. My mom and I decide that there's no point in continuing this waiting game and that I should call my surgeon and set up a surgery date to get this fixed.

My mom treated me to a lovely lunch to which she calls the "make Caitlin happy afternoon"...she's the best. I decided to call my doctor when I notice a missed call from my doctor's office. I call my surgeon and speak to the APRN who has been just as involved as the surgeon. We talk and she says she got the results of the study and her and my surgeon are disappointed as well at the results. I tell her of my discussion with my mom and that I just want them to make an appointment for the surgery to get this over with. She agrees to do so but says that I need to talk to my surgeon anyway in advance.

My doctor calls me later and says that she spoke to my surgeon and he is not going to set a date before talking to me first. We have an appointment the 18th and we will discuss everything then, holding off on a surgery date. Fine, whatever. The day goes by and I succeed in keeping myself busy but the results are lingering in the back of my head.

Today I was busy all day at work and now I'm in a funk. Now I'm really thinking about all my past surgeries and the fact that I'll need AT LEAST two more. I've already had 3, damn. I just want to be left alone right now and not talk to anyone. You know, sometimes I feel guilty that I feel this way. I feel that maybe I'm overreacting and that I shouldn't feel sorry for myself when so many other people are struggling more than I am. I feel like I need approval from family and friends to feel pissed off and sad about this. Weird, I know.

Fact is that I am pissed off and sad. I'm scared to have another surgery. I'm scared that it won't heal or that it'll come back. I'm scared I won't be able to get rid of the bag. I'm scared of not feeling 100% again or gaining all my weight back. I'm scared that I'll be scared forever. I'm scared my body will never recover from so many surgeries in such a short amount of time, but I feel like I'm in a rush. A rush to get rid of this bag and to get my life back to normal, the normal I once felt. I feel as though my life is on hold...in every aspect, relationships, school, career...LIFE. And I'm not referring to the bag putting me on hold. I've learned to deal with it and it becomes a routine. I am referring to these upcoming surgeries as this hold.

How many more will I need? Will my surgeon agree to surgically fix the fistula? Will it come back? Will the surgery be soon or in a few more months? UGH I can't move on when I don't have the answers.

Guess all I can do is continue this waiting game and continue to live my life as best as I can right now and continue to gain my strength and confidence back.

Pouch Study Nerves!

So my second pouch study is this Thursday, August 4th. Nerves are starting to kick in now. My brother read my blog and laughed at me saying that vagina is a medical term so I can stop using "female area" or whatever I was writing before, so okay. My test is at 10am and my mom is going with me for support. She told me the other night that either my surgeon will want me to wait a few more months to see if the fistula heals or he'll want to do surgery on it...either way I'll have to deal with it. I really don't want another surgery because that will prolong this wait even more. I just want the bag off dammit.

I am hoping that the fistula is healed but I have been having some leakage from somewhere "down there" and my paranoid self is thinking the fistula is still there and that the leaking is coming from my vagina. I'm trying to stay positive and think that it will all be peachy but my gut is telling me otherwise. Deep down I know it's not the end of the world but it feels like it sometimes. I still feel "why me" sometimes and have been feeling more anxious lately.

Just a little update. I saw my primary physician the other day and I have low blood pressure and I'm only 97.2 lbs!!!! I almost died when I read the scale. My stupid scale at home had been saying 100lbs..what a bummer that was. So I've only gained 2 pounds since I left the hospital in March?!?! Unbelievable. I guess the good thing is that people have been saying I look healthier and don't look dead anymore, lol. Actually, it's really not funny because I did look dead. But hopefully they're being truthful that I do look healthier.

I'm sure I'll be on here over the weekend at some point either venting that the fistula didn't heal or jumping in excitement that it did...

Feeling the suspense?? I sure am.

A new light

Because I lost so much weight, I'm very self conscious about how I look. I was very comfortable with my weight before, now I look too skinny. It sucks but I'm slowly just accepting it and knowing that I'll gain it all back...eventually. It does seem to get easier day by day. My bag is a part of me now and I have a routine. It's just become a part of my day and my life. I have my days where I cry and feel sad but I'm learning to not dwell on it or continue to feel sorry for myself..it could be a lot worse.

So I'm just living my life working full time and spending time with my family and close friends. I don't go out really, not that I ever did before I got sick...but I'm definitely a homebody now. I like to read and spend time at home. Doesn't help that I don't have much energy to do anything anyway. I have been out a few times to the movies and out to dinner and things like that but no partying in my near future. Don't mind though :) ...it'll soon get better. 

Let's try this again

Alright...Let's try this one more time. As soon as I woke up from surgery, I could already feel NO pain in my butt. It was amazing. I was pissed I had the bag but happy as a clam I didn't have that pain or any stool coming out either end. This time I was only in the hospital for a few days. Recovery process was still tough once I got home but didn't have to take my pain meds as often which was a blessing in itself. 

I'm trying to remember when I went back to work...June 20th on a part time basis again. Body was still weak and still had my "hunchback"...fun fun. I was already used to the bag and had a routine of emptying it and changing it so it wasn't new to me. That was the only upside to this whole thing. 

Fast forward a little bit, today is July 22 and I just worked my regular 8 hour shift today. I went back full time the second week in July..can't remember the exact date. It was hard again to go back full time and do all that running around but my job was understanding again and told me to go back slow and to let them know if I was having trouble and needed to stop and relax. I'm no longer taking any pain meds and have no pain at all. I take vitamins and Imodium to thicken the output in my bag so I don't have to empty as often. I'm also on anti-anxiety medication that helps me sleep like a log at night :) I wasn't sleeping at all in the hospital or when I got home.

Unfortunately, it's a little scary to be on them because when I ran out about a week ago and went "cold turkey", I felt more anxious than ever. I didn't sleep that night and had horrible nightmares. My doctor said it's not good to just stop anti-anxiety meds, you need to ween off of them. When you just stop taking them, it can have a worse affect on you than how you felt before. It did just that. I felt like I was in a whirlwind. I was so anxious and hyper-feeling. It was a bad feeling and immediately got a re-fill. Now I'm weening off of them and plan to see my physician to see what we can do to make sure I get sleep at night. I never take the pills during the day. I get anxious in the morning but not enough to take them. I'm usually fine at work and don't worry too much. I'm usually too busy to think about the bag or anything else anyway. 

I've only had one bag leaking experience and that was a few days ago. In the summer the adhesive becomes very itchy and I remember scratching the crap out of it that night but I couldn't scratch where I wanted which was right underneath the wafer, the skin next to my stoma. I guess I scratched so hard that I popped the seal because I woke up at 5:30am with shit all over my bed and arm (sorry for the image)...It was disgusting. I shot up out of bed and grabbed a shirt to stop it from leaking everywhere. It was a mess, literally. Clean up wasn't bad though, just threw the clothing in the trash, changed my bag and showered and I was good to go. Not as traumatizing as I thought it would be. If it had happened in public or at someone's house, it would have been a different reaction of course. Now I'm extra careful with scratching and now I have anti-itch powder that should help. 

I see a personal trainer who is helping me get my strength back. We've only been working on stretching because that's really all I can do and we have to start from the bottom up. I have really bad back and neck problems from being in odd surgery positions and laying down so much. I'm still pretty weak and get very tired easily so we're taking baby steps. My posture has been better, I don't hunch over as often. But standing up straight causes me a lot of back pain so that hunch always comes back. She's also trying to help me gain weight by suggesting high calorie foods. I've only gained 5lbs since I was hospitalized in February. I left the hospital at 95lbs and now I weight 100lbs..just hit the triple digits the other day, was pretty exciting. Only 25 more pounds to go!! (with a hint of sarcasm and a sigh...) It's a work in progress. 

Emotionally, I have a hard time some days. I still cry here and there sometimes just for no reason. Was told my anti-anxiety medicine can mess with you that way as well. Great...I've been to a support group and will be going this coming Thursday for my second time. Hopefully, I'll get the support and insight I need. I made an appointment for my second pouch study to see if I still have the fistula..I'm praying it healed so I can get this bag removed but we'll see. I try not to think about it because it stresses me out...even though it's not the end of the world and plenty of people live with an ileostomy for the rest of their lives...but to be honest, I don't want to be one of those people. I hate it and feel restricted.

Waiting Game

I continued to wait for my bottom end to heal. I went back to my doctor every 2 weeks and he would check it. It needed to be healed enough to endure a "pouch study". It's pretty much a colonoscopy but you're wide awake. It doesn't take long. What they do is stick a long tube with liquid in it and a camera attached up your butt and into the inner pouch that they made. They fill it up with the liquid to see if it leaks out of the pouch. If there are leaks, then you have to wait longer, meaning it's not healed yet. Fortunately, mine didn't have any leaks!!! But something else happened, the liquid came out my butt but my female end as well which was an odd sign. If my pouch didn't leak, I could set my date for TAKEDOWN. Just a fancy word for the reconnection of the stoma to my new pouch. Then I would no longer have the bag and that was very exciting. 

May 12th was my date for takedown. I was so anxious and just waiting for it to all be over. The day before my surgery, my surgeon called me and told me that my pouch looked good but I may have a possible fistula (when the liquid came out my female area). He said he wouldn't know for sure until he went in because it looked so small on the x-ray. My parents and I got to the hospital bright and early for my surgery. I was ready with all my butt creams and extra soft toilet paper. Anxiety took over of possibly waking up with the bag still on and the anxiety of being under anesthesia again and just the simple fact of starting the healing process all over again.

I was told the healing time would be less, approximately 2 weeks. I had taken off work for about 3 weeks just in case and had that all taken care of. Round 2 surgery and a few hours later I woke up. NO BAG!!! I remember being in a lot of pain in my butt. My pouch was working right away and I was pooping normally again. Lol. So that was good news. I got home and it went downhill from there. 

I can't describe the type of pain I was having once home from the hospital. It hurt so bad to take a normal bowel movement. It was sharp excruciating pain right around my butt hole. The skin around it was red and very irritated. I really can't describe the pain. I couldn't sit, stand, walk, poop, anything. Laying down on my side was about all and that hurt like hell too. I had no idea what was going on or why I was in so much pain. It wasn't making sense. On top of that, I had stool coming out of my female part, which was the fistula my surgeon had told me about. He said it was so small, he figured it would heal on its own. That was extremely painful to that area too. I wanted to shoot myself (not literally) but I was beside myself. 

I thought about going to the ER a few nights because the pain was so bad and my pain meds weren't working which was a surprise. So surgery was May 12th and I went and saw my doctor May 23rd for a check up. I told them how much pain I was in and I was practically in tears. My surgeon took one look at my bottom and told me I need to have surgery to put the bag back on asap. So I had surgery May 24th and had the bag put back on. I was crying while waiting because I was in so much pain and then pissed that I was in pain and pissed that I had to have the bag back on..ughhhhh. It sucked so bad.   

Slowly but surely

Day by day things seemed to get better according to my family. To me, things still seemed on hold. March 30th I went to work on a part time basis. No more than 4 hours a day. I was limited to lifting no more than 5lbs, not that my job required much lifting anyway. We have an office within the building that someone always has to be in in case of a crisis or whatnot. Luckily, I was given office time for those 4 hours because getting around was still very difficult. I was exhausted after 4 hours. I did part time for a few weeks then finally went back full time which was a slap in the face. I hadn't been to work since the beginning of February and now it's April and I'm just starting to do 8 hour days. It was tough but got easier.

Work was very accommodating and definitely made the adjustment back a lot easier than I had expected. I stopped the visiting nurse once I went back to work and saw my surgeon every 2 weeks. Doctor visits were routine. I would see the APRN first. She helped me through all the adjustments of the bag and helped me through the whole process. She is the sweetest woman ever and I appreciate everything she has done for me. I would see her and she would change my bag for me herself and check all my stitches...checking I mean, sticking a long cotton swab in my incision and cleaning it out...made me nauseous and hurt like hell! But it had to be done. I could never watch her do it...ick!! Then I would see my surgeon who is just as great. He would check my incisions as well and check how I was eating and feeling and all that. 

They would check my butthole where they closed me up so nothing would be coming out. It was very sore and they were waiting for that to heal before they attempted to "hook" me back up again. The body is a weird thing let me tell you. Even though I had stool coming out my stomach, I still had some liquid coming out of my bottom end, just clear. Doctor said it was normal, so okay. At first, it would leak on its own and it sucked but then it got easier and would only happen when I went to use the bathroom. Now I just had to wait. 

Still Recovering

The recovery process after my first surgery was nothing I had ever expected. Here I am at 24 years old not being able to dress myself or take a shower without someone checking in every few minutes. My mom borrowed a shower chair from the senior center so that I could sit in the shower. I was too weak to hold myself up and the heat would make me dizzy sometimes. I looked like I was on the verge of death when I came home. I was just bones, my face was sunken in and my eyes looked huge. 

Walking around my house was a chore in itself. I walked very slow and even needed help getting from room to room. It was hard to sit as well because the stitches hurt so bad. My mom would help me get dressed most of the time because I could barely bend to put pants on or socks or shoes. I felt like a zombie because I was on pain medicine at all times. Doctors told me to take one as soon as I could to beat the pain, so I was taking them every few hours. I was on a million antibiotics as well which sucked considering I am a horrible pill taker and these pills were gigantic! 

Getting used to having a "poop bag" hanging from your stomach is not easy. Don't get me wrong, I am very grateful because it saved my life but it was hard to get used to. Everything I ate came out exactly how it went down. Didn't help that my bag was clear so I could see everything and it became somewhat of an obsession. I was amazed with it and hated it at the same time. It took over my life. It was all I talked about with my parents, constantly telling them and showing them which I'm sure they hated.

Sleeping became almost impossible at night. I was used to being up every hour in the hospital that once I was home, I couldn't fall asleep or would wake up every hour or so. My pain pills took away the pain but made me feel funny and I wasn't a fan. I was so out of it and loopy half the time. I wasn't allowed to drive for obvious reasons so my parents drove me around if I had a doctor appointment or just to take a scenic drive to get my ass out of the house. God Bless them because I don't know what I would do without them. 

Emotionally, I was a mess. Physically, I was a mess. Mornings seemed to be the worst time of day for me because I'd wake up completely out of it and in pain. Then to top it off, I cried for about an hour or more every morning. I cried because of pain, because I felt sorry for myself, because I hated the bag, because life sucked at that moment. Let's just say I cried A LOT. I was miserable. 

I would try and take a small walk, as recommended by my doctor, and it wasn't a pretty site. I made it to my driveway pretty much and felt like I was going to collapse. My lungs felt so tight and I was breathing heavily. I had what I call "the hunchback". It was very hard for me stand up straight and still is because I was laying down so much in the hospital that my lungs were constricted and my body was pretty much caving in to itself. Once a week or so, I'd try to go a little further on my walks each time and eventually made it halfway down the street. Not too shabby. 

Recovery Process

So now I have no colon and this bag attached to my stomach...great. The last 10 days I was in the hospital this time around is very fuzzy and I don't remember much. I do remember being in a lot of pain. Thank God I had a private room this time around. It was such a blessing to just deal with all this without a stranger beside me. My parents and/or brother were always there with me except for at night of course. 

My brother was a huge blessing. He's 5 years older than me and we're really close. But what he did to help me in the hospital was amazing. He was studying to be a nurse and is a CNA...he helped me change my bag and clean the stoma because I hated doing it. He would stay late with me and watch tv and just make me laugh to keep my mind off of everything else. He continues to be there for me and don't know what I'd do without him.

Leaving the hospital was probably one of the hardest things to do. I was scared to go home because of all the pain I was having and the fact that it's like a security blanket. You're in there for so long, becoming dependent on nurses to help take care of you...now you're home depending on yourself and family members. I was happy to be home and in my own bed but it was quiet, too quiet. I was used to people coming in and out taking blood or checking my vitals. I barely slept at night during my stay. It was no different once I got home. 

The pain is again indescribable...different pain than what I had originally but pain nonetheless. I had a long incision right below my bellow button and above my pelvic area. Of course it had to get infected and become even more painful. This infection required a visiting nurse to come everyday to clean it and stuff it with gauze to stop the puss. That was an extremely painful process in itself. The nurses were also there to guide me in changing my bag to make sure I was doing it right and that I was comfortable doing it. I didn't do it myself for the first few times. I had the nurses do it because it was gross.

I'll never forget my first experience with the visiting nurse. My parents will probably wonder why I mentioned this if they ever read it :) I was waiting for my nurse to come and I was using the bathroom. Well all of a sudden, I'm peeing and everything gets white and I get really dizzy and extremely hot. I start freaking out because I can't see squat and I feel like I'm going to faint. I hear the nurse come in and I hear my dad and brother talking to her. I start yelling for my dad or brother. They all come in the bathroom and there I am, sitting on the toilet leaning against the wall with my eyes closed moaning that I feel sick and can't see anything. My brother rushed and got me some water and the nurse came in and sat on the floor and began talking and taking vitals. This was our introduction...bet she wasn't expecting that. Haha, never saw her again after that day. 

I was dehydrated. One thing you MUST be careful with when you are living without a colon is your electrolytes and potassium and all that good stuff. I never drank enough water or anything when I was healthy and now I was being forced to drink A LOT throughout the day, which I was clearly having a hard time with. Fluids, fluids, fluids are most important. Water, Gatorade, V8 juices...anything with a good amount of potassium in it will do just fine. I try to drink enough but I know I'm not. I've only have one other incident like this one and it was about a week ago...hey, I'm trying.