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. 

Countdown to surgery #1

The ostomy nurse came and gave me a bunch of brochures and information on what I was about to deal with. She was very helpful and answered all my questions. Surgery was set for a few days, Feb 24, 2011. She came and helped me pick a reasonable spot for my stoma. She put a red dot on my stomach and we were all set. Because I had lost so much weight and was on so much medication, there was some nervousness about going through with surgery. My nutrition was good though so my surgeon approved me and said recovery might be a little longer just because I was so sick to begin with. 

Here comes Feb 24 and I am happy, scared, anxious, nervous...every emotion you could have, I think I was experiencing. I was so tired of being so sick that I was ready to do this but I don't think it all really set in about what was going to happen. I wish my surgery was in the morning but of course not. I had to wait in anticipation all morning and afternoon. My surgery was around 2pm I think. Can't quit remember. My parents were there and planned to be there for the 3-4 hour surgery. Surgery is not fun and very scary. They wheeled me into the operating room which is just a huge white room with a whole bunch of strange looking equipment. There had to be at least five or more people in that room running around doing things.

I laid on the operating table and they told me to hold out my arms (as if I was being checked at security in the airport). They strapped my arms to the table and put some funny things on my legs so they didn't get blood clots. Some nurse was talking to me and I told her that I was freaking out and she said she was going to give me something to calm me down through my IV. So she did, then a few minutes, she put the oxygen mask over me and I just remember being so nervous watching all the nurses walk around and fiddle with me. Then I was out.

I woke up so out of it and confused. My parents were right by my side in the recovery room. It was around 11pm or midnight..don't remember. The surgery that was supposed to take 3-4 hours took about 8!!! My dad has explained me the reason for this a million times but I always forget. The surgeon told my dad that if he was in the position I was in in the operating room, he wouldn't last a minute. Apparently I was put in all type of positions. When I finally came around, I felt like a bus had hit me and I was colon-free. 

Ileo-what??

After a few weeks in the hospital with no progress, the surgeon made his way up my floor and into my room. He came up and spoke with me alone and then with my parents and I. He was very nice and seemed very knowledgeable. Stated there was a surgery that he specializes in where he removes the colon and constructs what they call a J-pouch out of the small intestine. The pouch will act as the colon over time, absorbing nutrients and liquids. The only real difference would be that I would go to the bathroom about 6-8 times a day or more depending. He made sure he didn't make light of the surgery because it is a very serious operation and removing your large intestine is a big deal. It was a lot to deal with and digest. He let me think it through and do some research.

I immediately started googling j-pouch surgeries and found an amazing website www.j-pouch.org which has been a life saver even till this day. I talked to many people through that site and read many life stories of people who have had the surgery and how it saved their lives and how it was ten times better than dealing with colitis or crohns. At that point, I knew deep down that I would most likely go through with the surgery. I did a lot of thinking alone and aloud with my family and friends and finally came to the decision that the surgery was my only hope of getting better, leaving the hospital, and ultimately saving my life. And so the process began.

My surgeon sent up an Ostomy nurse who specializes in these surgeries as well. Without a colon, I would have a temporary ileostomy. Ileo-what is exactly what I said and had NO idea what that was. Those of you who don't know as I didn't, it's where they pull out part of your small intestine (called a stoma) so that it's literally protruding out of your stomach, on either side of your belly button. Mine is on my right side. This is where your stool and gas will come out while the j-pouch is healing. Attached to your stomach will be a special bag that you can empty whenever it gets full and you completely change the bag every 3-4 days. I could take a picture and show but I think these details are enough. Feel free to google if you need a visual :)   

A state of confusion and what ifs

I arrive at the ER with my parents in the early evening. As I'm waiting to be called, I'm sitting hunched over grabbing my stomach rocking back and forth because of the pain...it was crazy. Finally I get called and go through the whole admission process. I don't remember much after that until I'm on a stretcher in the middle of the ER hallway. It was so crowded, they were just sticking people in the hallways. Numerous doctors and nurses came to speak with me and get details of what I was feeling and blah blah. My parents were doing a good job at trying to distract me from the pain. They had me on morphine which was barely helping with the pain. I was in the ER hallway on that bed for about 28 hours. I was on one side of the hallway then they moved me to the other side of the hallway near the nurses station then I got an exam room for about 3 hours before I actually got admitted to a hospital bed.

I think I finally got to my hospital room about 9pm the following day. They had me on dilaudid IV which is stronger than morphine and that was easing the pain but only for a short amount of time. I felt like I kept asking for it every hour but they would only give it to me every couple hours. All I really remember is being in a lot of pain and constantly using the bathroom and losing a lot of blood but not enough for a transfusion which was good. I remember the pain IV being AMAZING and instantly taking the pain away and putting me in a state of relaxation which I hadn't felt in months.

I saw a few GI doctors that worked in the hospital. They came and discussed how the pain was and what medications I would be taking which I was all too familiar with. They had me on an all liquid diet which SUCKS. I was getting liquids through an IV and was only allowed to eat jello, chicken broth, and those nasty boost/ensure drinks. I went from a thin but healthy 125lbs to a scary and deathly looking 90-something pounds. I was all bones. I must say it was pretty gross and I refused to look at myself in the mirror and HATED being weighed every morning by the nurse. I don't know what difference they were expecting to see. It was the same everyday, ugh.

Days turned into weeks and there was no progress. The doctors had me on a high dose of prednisone and about a million pills treated for colitis and nothing was working. Pain was the same, felt like I was always saying 8 or 9 when the nurse asked "On a scale of 1-10 on pain, 10 being the highest, what is your level?" I hated being asked that question, it got old reallll quick but hey they're just doing their job. The doctor(s) didn't really know what to do. They were kinda confused as to why the pain was so bad and not going away like it had previous times when I had a flare up. After being in the hospital for almost a month, they decided to send up a surgeon to talk with me and this is where a life changing experience began.

Let's go back to the beginning...

I am writing this blog in hopes that it will help other people who are in or who have had similar situations realize that they are not alone. I thought I was but not anymore. This will probably be a very detailed story of what I went through but I think it'll help my recovery process. It's reality and I need to accept it and hope the rest of you will too.

It all started at age 22 during my junior year of undergraduate school. I was diagnosed with Ulcerative Colitis, a form of inflammatory bowel disease (IBD) where the body pretty much attacks the colon. Symptoms are very painful, including bloody stool and extreme lower abdomen pain. I was put on many different medications including prednisone to help the symptoms. Prednisone made my cheeks puffy (where I got the nickname cheeks lol) and my stomach puffy and just isn't a good drug to be on in general. My mom has UC so she knew what was going on and what I was going through, unfortunately. She hasn't had a flare up in over ten years, thank God. The colitis hit me hard and never eased up.

It started to get a lot worse around Christmas time of this past year (2010) and I started losing more blood and became pale and weak and just overall crappy feeling. Attending a work staff meeting, I was in the bathroom during the two hours more than I was in the meeting. I was so weak and in so much stomach pain, it was pretty unbearable. After the meeting, all my co-workers kept telling me to go to the hospital because I didn't look good at all. I kinda brushed it off and figured I'd be okay. Truth was, I was scared as hell to go to the hospital because I'd never been and didn't know what was going to happen. The drive home was HORRIBLE. I honestly don't know how I made it the 25 minute drive to my house. I was crying the entire way. As soon as I walked in the house, I told my parents who were sitting in the kitchen that I needed to go to the hospital NOW. They looked terrified and called my GI doctor and asked them what to do. They said to go to the ER, that they'd call and let the hospital know I was on my way...