The woman behind the picture - Part 4: Noelle Grant

I was never an athletic child. I hated gym class, never participated in sports, and was always the last person to be picked for a team…justifiably so.  As a young adult I joined a couple different gyms and would do different aerobics, step or weights classes that were offered. I really enjoyed this and I started to get a sense of my abilities in a more active way that I never knew were there before. I was 26 years old when I ran my first 5 km race. I didn’t love it but I loved the way I felt afterwards. The sense of accomplishment I got from finishing, and the feeling those endorphins gave me was amazing. From there I signed myself up for a couple more 5 km races and some 10 km races. When I was 28 years old I started training for my first half marathon. By this time I enjoyed running much more than I did when I ran my first race. I had built up my cardiovascular tolerance and I was able to go for much longer distances. As many runners are aware, people often get what’s referred to as “the runners trots” when running for long durations. I was no exception to that rule. On the morning of the race I took 2 Immodium in an effort to prevent my need to stop part way through the race, wait in line for a stinky port-a-potty, and lose a significant amount of time off my race as a result. Well, the race went great! I did really well for my first half marathon and I was soaring high running through my head what would be the next half marathon I would sign up for.

From the moment I finished the race continuing through the entire next week I was unable to have a bowel movement. I figured I really bunged myself up by taking those 2 Immodium. I felt like I NEEDED to go, I just couldn’t. That lasted a week and then the floods came. Not only was I able to “go” but my stools were entirely liquid and filled with blood. I didn’t know what was going on and I didn’t tell anybody as I figured it was a result of the Immodium and would fix itself with time. Well, it never did. The liquid bloody stools continued and increased in frequency. In addition to having increased stools, I also had false urges to go. You know the feeling when you just HAVE to go NOW! Take that feeling and multiply it by 100. There were times I felt I had to pass gas and ended up messing my pants. I had lost all control over my bowels. I was afraid to go for long walks or too far in the car for fear that I would need to go and wouldn’t have access to a bathroom. With all those trips to the bathroom I had a VERY sore tush. An additional symptom I struggled with was having severe abdominal pains that I couldn’t explain or pinpoint as to why, and I would simply hold my stomach and apply pressure in attempt to alleviate some of that pain.

Eventually, after about a month and a half of this craziness I went to the hospital emergency room and had the on-call Gastroenterologist (GI specialist) do a colonoscopy on me. The results of that test showed that my entire large intestine was covered in ulcers and I was diagnosed with an Inflammatory Bowel Disease, Crohn’s Disease, which is a chronic illness and an autoimmune disease. I spent 11 days in the hospital that first time as they tried to figure out what drugs would alleviate my symptoms and get me healthy enough to be released. I was super dehydrated from all the fluids I had been losing and they were pumping me full of fluids so fast I couldn’t keep up…I was on the toilet every 5 minutes peeing it out but I wasn’t getting rid of it quick enough. I blew up like a balloon…literally. I was so full of fluids that I couldn’t bend my legs. Eventually I was discharged but I was only home for 5 days before returning to the hospital with horrible symptoms at which time I was again admitted and kept for 17 days this time. Things in my intestines had deteriorated significantly.  Eventually I had to take a heavy drug called Remicaid. This drug is EXPENSIVE and comes with the risk of many very undesirable side effects. That being said, I needed SOMETHING so figured I’d give it a go.  It began to work almost immediately. I went from having close to 20 bowel movements a day down to about 10 instantly.

I was eventually discharged from the hospital and was able to see the bright side of things. I returned to work, returned to the gym, and started running again. I went with friends to Vegas to run the Rock & Roll Las Vegas Half Marathon with proceeds benefiting Crohn’s and Colitis research. I also signed myself up to train for a full marathon. I was so pumped. Yes I had Crohn’s and wasn’t really all that healthy but I was healthy enough to be active again and I was flying high. Part way through this training program I went to Mexico with my husband and some friends. When this was approaching I could feel a flare up coming on (I was having to use the restroom more and more frequently) and as such I made sure to go for my Remicaid infusion before we left for the trip. On Day 3 in Mexico my flare up took hold and I was running back and forth to the washroom from the pool and beach. The rest of the trip I spent the majority of my time in the hotel room bathroom, steering clear from pretty much all food. My trip was ruined, I was in pain, I was shackled to the toilet again and I was devastated that my miracle drug had stopped working for me.

I called my specialist from my hotel room and advised him of what was going on. I was directed to go directly to the hospital upon my return home and he would have me admitted. When I arrived at the hospital he did different tests and at my request we did another Remicaid infusion…this time a double dose. It didn’t work. I was out of options at this point as Remicaid was the heaviest and most effective drug to treat my symptoms and it was failing me. I was now faced with the decision to have surgery. Surgery involved having my large intestine and rectum removed, creating an ileostomy, and creating a j-pouch. An ileostomy is a piece of the small intestine that is brought to the surface of the stomach which is where I would then have my bowel movements from and I would have a poo bag attached to my stomach to catch the poo. There are no muscles to be able to control this so I would be incontinent and pooing basically all day long with no control. A j-pouch is also a piece of the small intestine that is brought down to the anus and acts as a reservoir or a manmade rectum. Surgery went well but I came out with staples going up my entire abdomen. I feared I’d lost my belly button, I was itchy from the anesthetic, I couldn’t move my lower body from the epidural, and I was really groggy. Oh, and I’d woken up with a poo bag attached to me that wasn’t there when I went into the OR. This was a lot to take in. For anyone who has had severe abdominal surgery they know that one of the things that must take place before being allowed to go home is you need to be passing gas and having bowel movements. Well, my bowel movements were completely different. For one, they were now coming out of my stomach and for two, well, the bowels get incredibly sluggish after surgery like that and mine just didn’t want to work. Same thing with passing gas. I now had no control over this bodily function and didn’t know if I was or I wasn’t (this also happens out of the ileostomy on the stomach). Eventually I started to hear gas being passed. It sounds basically the same as it does for a regular person. I was so excited. This was something that is celebrated on the colorectal unit at the hospital. It’s a milestone. Unfortunately it was never enough to please the nurses. I was stuck there still, waiting, willing my body to start doing its job. Well it didn’t. Days turned into weeks.

 I was having complications and becoming very sick. I started vomiting a horrible slimy forest green bile and was forced to have an NG tube put in. This involves having a nurse feed a tube up my nose that is supposed to rest in the stomach area. The idea is that all that bile comes out through my nose tube and goes into a container that is sitting on the wall. This was a horribly traumatic experience for me. I was so sick, in so much pain and discomfort and this was not going well. The tube going in was making me puke even more. I was filling 2-3 wash basins full of this green slime. The second attempt something went amiss and the tube went in my nose and out my mouth. I was gagging and panicking asking them to “help me” as I grabbed the tube from my mouth and pulled and pulled and pulled until it was out. A new nurse had to try as I had completely shot the confidence of the first nurse and her failed attempts. I hated this but to be honest, I felt soooo much better once that tube was finally in! Over time, eventually things started to work for me. I was passing gas and stool and was finally allowed to go home. The day I was to go home however nothing was coming into the bag…no gas and no stool. I had been in the hospital for weeks at this point and didn’t want to stay longer so I didn’t tell anyone that this was happening.

When I got home I started to feel really ill. My stomach was starting to distend and it was as though something was alive inside there. It sounded and felt like violent sloshing around of liquid. So loud in fact that my husband could hear it from across the house. But still, nothing was coming through into the bag. I was in agony and as much as I hated it I knew what I had to do. Back to the hospital I went. I was admitted right away but I’d lost my awesome bed with a view. More tests were done and it was learned that I had an infected abcess. I had to get a drain put in that connected through my butt cheek. Sitting was uncomfortable, laying was uncomfortable, rolling over was uncomfortable. This sucked. After a couple days, things with the bag began working again and I was feeling healthy and ready to go home. But I still had that darn infection and drain in that was keeping me at the hospital. I was dying in there. I had withered down to around 90lbs and was just a pile of bones sticking out everywhere. I wanted to go home and eat normal food and get back to exercising to gain some of my muscle back. I begged and pleaded with my doctor to discharge me but no luck for weeks. The infection was such that only a certain stream of antibiotics could kill it and they had to be administered daily via IV. I continued to beg to take out the drain and let me return to the hospital daily for my iv antibiotics. After a 6 week stay in the hospital my surgeon agreed with my plan. I was finally discharged. I had to keep my IV line in and it was with me everywhere I went which sucked. I was so frail that stepping onto the curb took my breath away and made me lose my balance. I couldn’t walk up the front steps or a flight of stairs without pulling myself up by the railing. This was awful and I needed to gain some strength. I set out to get me some xxx mass building protein powder and I started doing P90X in my basement. I was pathetic. I could hardly lift my own foot let alone a weight, but each day I got a little stronger and then a little more. Eventually I was going back to the gym and meeting with a personal trainer on a daily basis. I was strong again. I was gaining control of my health in ways I was fearful I never could again, and I was so happy. The only thing holding me back was that darn bag. I was dying to have that reversal done.

Life with a poo bag is not a glamorous one to say the least. I had to figure out what clothes I could wear that would hide the bag as it filled up, which was constantly. I had to empty the bag numerous times a day. With the fan on and the bathroom door closed we could leave the house for an hour and come home and still smell it. Sometimes it created a great deal of pain and discomfort as it was working to pump out stools. There were times when I would be out and I would have a major leakage and have to rush home to change the dressing. Speaking of the dressing, that would only last for 3-5 days before I needed to change it again. Each time seemed to be a little worse as the stool would erode the paste that made it stick to my skin allowing the stool to sit on my skin and burn through it with the acid. It was red, raw, stingy and painful, but I couldn’t allow it to heal because I was always pooping. And then there was the sleepless nights. Going from being a stomach sleeper to a back sleeper was not an easy one. I wanted to try to sleep on my side but was afraid I would roll all the way over onto my stomach and squish or burst the bag. And then I would be up numerous times in the night to empty the bag. You would think that when you go all night long without eating or drinking that the output would slow down but alas, it did not.

I was so excited the day I got a call from the surgeons office saying my surgery to have the reversal was booked. The only downfall was that my daily gym routine was going to have to be interrupted, yet again, and I would lose ground that I had gained. The surgery went well. I recovered much quicker from this surgery than I had from the first. The day after surgery they had already taken me off the IV and I was in the stairwell doing stairs in attempt to keep up with some form of fitness. Turns out however that life without the bag, being connected to the j-pouch and pooing out my bum again was not all it was cracked up to be. I felt like I was in a flare up again prior to my Remicaid days. I was on the toilet ALL THE TIME!  I guess when you have no rectum you don’t have the muscles to hold things in quite the way you once could. My surgeons advice was to hold it for as long as I possibly could and when I felt like I couldn’t hold it any longer, to hold it some more. I was laying in bed clenching my butt cheeks 24 hours a day and still going to the bathroom about 15 times daily on average.

Eventually I ventured out to get back into the gym but my workouts were constantly interrupted by the need to run to the bathroom. Life was constantly being interrupted and I was starting to think I should just camp out in the bathroom and never leave it. My bum was raw and in pain and I was hating life. One day I noticed some pain in my “lady area” while wiping after going to the washroom. I didn’t think much of it but that pain started to get stronger and stronger and I started to notice a lump growing. It got to the point where I was taking Tylenol 3’s with codene to manage the pain and even that wasn’t doing the trick. My husband called the ambulance and away I went to the hospital. After hours in the waiting room I was seen by the ER doc and then an OBGYN. It was determined that I had a Barthelone Cyst on my labia and I was scheduled to go into the operating room that night to have the cyst drained. When I awoke I was told that there was feces coming out of the cyst and was sent home. I begged the surgeon not to send me home as I could feel the cyst filling again and the pain was returning. He sent me home anyways, but I returned that same night. I was then seen by a different general surgeon who determined that I did not have a barthelone cyst, but instead I had a fistula. A fistula is an unnatural tunnel like connection between two parts of the body. Mine was an vaginal fistula meaning that a tunnel was created from where my poo was going and connected to my labia resulting in my labia filling with feces. I was taken back to the operating room and a seton drain was put in to allow for constant drainage and prevent the buildup of feces. This was great for relieving the pressure and pain down there, but it meant that I had feces dripping from my labia uncontrollably all day and all night.

Eventually I was sent home with the drain still in, still leaking feces uncontrollably from my lady bits. This was probably the most difficult time for me out of everything I had gone through up to this point. What was happening to my body was taking a toll on me emotionally. I couldn’t wrap my head around how the body can create a fistula and I couldn’t come to terms with the fact that I was pooing out of the wrong parts. I couldn’t walk the dog, I couldn’t go to the gym, I couldn’t go to the grocery store, I was house bound. I often would be lying in bed watching tv and would start to smell myself knowing it was time to go change my pad as it had filled with feces. I was a wreck and I started to become highly depressed. I would lay in my bed staring at the wall for hours, sometimes with tears streaming down my face, sometimes with no emotion or expression at all, and ALWAYS wishing I would just die. I would beg my husband, mom friends and doctor to just kill me. I thought if only we lived in a place where euthanasia was legal. Life was not worth living at this point for me and I would have sold my soul to the devil to have my life taken from me.

Four months of this house bound, depressive, labia pooing torture went by before my surgeon agreed to perform another surgery, this time to close up the fistula. I was ecstatic! He warned me that this surgery does not always work but I didn’t care, I thought if it doesn’t work I’m no worse off than I am now and at least there was a chance it could work. Well it looked like the surgery took. One day passed with nothing coming out of the stitched up fistula, then another. I was almost in the clear to go home when things burst and I had feces pouring out of my fistula like niagra falls. This was worse than the previous 4 months had been in terms of flow, I could barely keep on top of it. I was devastated. I did not want to go back living the way I had for the last 4 months. I couldn’t! There was no quality of life in that and I was seriously toying with ways to have my life ended without actually killing myself. I made the decision to have my surgeon give me my ileostomy back. I hated that darn poo bag for the 5 months I’d had it before. I hated dealing with the noises in public, finding clothes that would hide it, managing the awful smell while emptying it, the sleepless nights to empty it, the constant filling of the bag, and the pain it caused when having to change it and tear my skin off layer by layer. With all that being said, I at least had a quality of life during those 5 months. I could walk the dog, go on a plane, go to the gym, and live a normal life (in comparison with what I had just been doing for the previous 4 months with the fistula). So, I had yet another surgery, got my ileostomy back and I have had it ever since (coming up on 11 months now). As much as I hated it the first time around, I had the opportunity to experience life without it and I realized how lucky I was to have this back. I now love my ileostomy. There are days where I’m in excruciating pain, discomfort, irritation, inconvenience, etc. but I have my life back.

To take back my life I began eating healthy and started doing my P90X videos again. I needed to re-build my strength and get rid of the awful anorexic look I had yet again from yet another interruption in my fitness for my health and surgeries. I really wanted to get back to the gym but I felt completely lost. I began looking around online to find a program that I could follow. I knew I didn’t need a trainer, I just needed a program so I wasn’t wandering around aimlessly in the gym getting in peoples way who actually knew what they were doing. I stumbled across Jamie Eason’s 12 week trainer on bodybuilding.com. This program provided me with workouts, nutrition, and supplements. It was exactly what I needed and I was hooked. Once the program finished I started it again. I have had people in the gym come up to me on multiple occasions and ask me if I’m training to compete. I tell them I’m not and they are surprised that I work so hard. They then ask what I am training for. I tell them I’m training to be healthy and strong. I have posted pictures on my facebook wall and had people tell me I am an inspiration to them and have motivated them to get healthy again. People message me all the time asking me for tips or advice on how to eat properly, where do I get my motivation from, can I help them get started, etc. I’m always happy to help and do every time in whatever way I can.

So where has my motivation come from? I have had my health stolen from me. Not just once, but time and time again. And will continue to do so for the rest of my life. I have a chronic illness. There is no cure. This isn’t going away for me. There are areas within my body and health that I have absolutely no control over. They can sweep in and take control of my health at any given moment. Rather than laying back and accepting that I’m “sick” and tell myself I can’t, I choose to take a stand and take control of my health in every way that is within my control. I CAN! There are lots of people in similar situations as mine who are afraid to try, who make excuses why they can’t or shouldn’t, who accept that this just the way it is, it’s the cards they were dealt, and they use it as an excuse. They have beliefs that they hold on to that are crippling them, making them sicker than they need to be. I refuse to follow that path. This is MY body. It’s the only body I’ve got. It may let me down from time to time but I have the power to show it who’s boss. Yes, the reality is my training will be interrupted again due to illness and I’ll have to start all over from scratch time and time again. Is this incredibly frustrating? Absolutely it is. But it makes me that much more motivated and determined to kick Crohn’s ass the next time I can get back up on my feet again, every time striving to do better than the time before. I am not sick, my body is. But it is also incredibly healthy and strong thanks to the time, effort, dedication and hard work that I put towards it. My health is my number one priority. Am I training to compete? Yes I am, I’m training to compete with myself. To be better than I was yesterday and overcome my illness in every way that is within my power. My only hope and biggest dream is to get my story out there for the world to read. I want to help others. To inspire those who are in similar situations as my own and show them that it CAN be done.