My UC/Crohn’s Journey
|Next to my twin sister you can see how sick I was.
|Here I am healthy, happy and Ostomy Proud!
Disclaimer* There are parts of my life that are not nice and not pretty. Some of those will be shared here. I decided to be raw about it because I wanted to tell the truth. I hope to show that even though life isn’t fabulous all the time- it can still go forward in a positive way. And I understand the value of finally knowing there is someone else out there who has gone through the same thing. Perhaps my honesty can help someone.
When taking health history your doctor always asks, “When did you first start experiencing symptoms?” For me, I was about thirteen. It was during the summer between my seventh and eighth grade years in school. I went from being on the track team and super healthy to tired and run down. It was painful to eat, and I had blood in my stool. A lot of it. I did not grow up in a home where sharing inconveniences was encouraged. So I ignored my symptoms as best as I could and kept going.
By the time I was fourteen the problem could not be ignored. My stool no longer resembled stool but blood clots. I had become the ninety eight pound weakling; listless and hollow. Nurses were giving me blood transfusions and z-tracking iron into my butt. However, I was being treated like a hypochondriac at home. I somehow made it all up for attention. Because of abuse issues in our family, my birth mother took me to herbalists who would not look too closely at bruises, but would peer into my eyes with a magnifying glass and give me handfuls of capsules to take each day that only irritated my already devastated guts. The bleeding worsened. I became so sick that I began to sleep continuously because I did not have the strength to do anything else. I began to get transfusions to keep up with the blood loss. I could only eat a few ounces of pureed food at a time. It occurred to me that I very well might die. I needed actual medical help.
When I was fifteen my birth mother finally had enough of me being sick and showed me exactly her level of distain in a disposingly cruel way that made it quite clear it was time to leave. I moved into my grandparents house and was immediately admitted into the hospital. I had pneumonia and was diagnosed with Ulcerative Colitis. I was given blood transfusions, lots of medications, and IVs. I was slowly given food until I could tolerate it again. Once home my grandmother fed me in the attempt to fatten me up and my grandpa made me laugh. That meant the world to me. I recovered from the pneumonia but not the Ulcerative Colitis.
By the time I was seventeen my Ulcerative Colitis progressed to the point where I needed to have my colon removed and I was given my first temporary ileostomy while my new j-pouch healed. My temp ileostomy was Amazing! Before the surgery I had no life. I stayed as under the radar as possible. I was too sick to participate like a normal teen. Now I was able to go to school, attend dances, travel to the beach with friends, and graduate high school. I did not get to keep my temp ileostomy for that long before it was time to reverse and become a j-pouch girl. The whole process seemed magical. After being so sick for so long I was eager to learn, and adapted easily.
Although I was largely happy with my j-pouch, I would commonly get pouchitis, a painful infection in the j-pouch that causes cramping, diarrhea, and loss of appetite. To help myself, I kept watch out for the symptoms and remembered Flagyl as the go to medicine each time. It became routine. I figured if this was the worst of it, I was pretty lucky, and continued on with my normal life.
Twelve years had passed with me as a j-pouch girl.
I had been married for nine years and I was thirty years old.
Then our daughter came along.
During the last trimester I developed anal skin tags that were dismissed as hemorrhoids.
I also had a burning discomfort and difficulty in passing stool.
All of these were treated as normal third trimester pregnancy issues.
Because of past surgery, my doctor wanted to be very careful to avoid a vertical tear that would injure my anus.
That sounded like a great plan to me.
The birth was exciting and effective.
Our daughter emerged pink and healthy.
However, I didn’t feel so great.
I couldn’t poo very well and lost weight very rapidly after birth.
I still had that burning feeling too.
I became consumed with breast feeding and told myself this must all be normal.
After all, I just passed a human out a very small opening.
I should hurt for a while.
Then it happened. Diarrhea came out my vagina. The first time it happened I did not know what it was. I had been having intense pain and all of a sudden I felt a warm gush. Between the color and smell I thought that I must have a horrible infection. But I did not have a fever. I went to the doctor immediately. No infection. I came home baffled and frustrated. Something was wrong. It kept happening. It was so frequent that I walked around with wash cloths in my panties. I could not leave the house for long, and when I tried I would often have to rush home before even getting to my destination. (Not what I envisioned as a new mother.) I had figured out it was poo. I was in pain. I was getting acid burns from the stool ~ no colon = higher stomach acid content in output. It was coming out my vagina!! I was no longer able to poo out my rectum. Stool had found a horrible new exit. I went to my doctor. When I told him he looked at me like I was crazy and said, “Girls just don’t work that way.” And then he prescribed me diaper cream. I got in the car, sat in the parking lot of the pharmacy, and cried. I was devastated. I felt hopeless. I was in pain. I smelled like poo. I was shitting out my vagina! And my doctor did not believe me!! Then I got pissed. I went home with my cream, got the mirror, and WATCHED IT happen. With a determined, “Damn it! I knew I was right!” I cleaned myself up, applied that damned diaper cream and another wash cloth. I was not going to be talked out of the truth again. I went back to the doctor, told him what was happening, and he referred me to the surgeon that treated me when I was seventeen.
It was over a month before I could get in to see her. All told it would be three months in total from my first mysterious vagina poo until I got to see my surgeon. I saw her on a Tuesday. She immediately diagnosed me as having an anal vaginal fistula. (Where the body makes an opening between the bowel and the vagina, spilling poo into the vagina.) I was also told that anal skin tags and the burning sensation are red flags for Crohn’s Disease. Difficulty passing stool in someone with no colon is a sign of stricture. She scheduled me for surgery that very Friday. Three days later I had my second temporary ileostomy to allow the fistula to heal. My temp ileostomy also came with a diagnosis of Crohn’s Disease.
This time healing was harder because I was so sick. I was severely underweight when I went into surgery. It was a hard recovery because I developed a deep wound due to malnutrition. Because I was only to have the temp ileostomy for a year, I was given a loop ileostomy which retains the entire bowel by diverting stool through a stoma allowing the fistula to heal. This allowed my bowel to keep twisting over on itself causing painful blockages. I never knew when I would have to go into the hospital and there was no way to avoid it by eating, behaving or doing anything differently. It was painful, frustrating, stressful on our family and very expensive. In my daughters first year of life I was in the hospital approximately eight times.
My goal on the hard days was to mother my baby. That was it. If I was able to do more than that, it was a major success. I breast fed her in my hospital bed and her daddy would teach her to walk in the halls of our local hospital. We put her first. After recovering from hospital stays I took my daughter to mom n’ tot swim class, played with her at the park, and kept going with our happy life. We did our best to continue forward with the good parts and not dwell on the ambushing nature of it all. I kept telling myself this was only a phase. I just needed to be strong enough to get through this tough part and it would be all worth it.
After a year I was very glad to have my reversal. But things would never be the same again. The stricture that had formed around my rectum could not be removed due to lack of tissue, but it was able to be opened a bit. So every three days I would manually open the stricture. A teeth gritting, breathtakingly painful endeavor. If I did not do it, the stricture closed up further making it harder to poo, and more difficult to open. For those who don’t know; a stricture feels like cartilage that is in your ear or tip of your nose. It is a rigid ring of tissue that grows closing off the natural exit. When you have one around your rectum and it keeps closing in, it needs to be broken open to allow stool to exit. It hurts. A LOT.
I became used to the schedule. I took care of my business in the evening after everyone was in bed and did not let it get in the way of my regular life. I needed to be a wife to my husband and mother my daughter and young son. I had a regular life to lead. However, despite my best efforts, about once a year I would have to go in for surgery to have the stricture opened. It got to the point where that stopped working. Then the lining of the inside of my j-pouch kept getting caught in the stricture. I ended up with necrotic tissue that needed to be removed and the area repaired.
Eventually we could see the end coming. At this point I had spent five years opening my anal stricture manually and surgically. No matter what I did my guts were still failing me. The last year had been blindingly excruciating. Stool that could not leave my body built up in my j-pouch painfully expanding as it filled with unevacuated poo.
I was to the point where I wasn’t sleeping because of pain. I couldn’t play with my kids like I wanted to. I felt disconnected from my family and the life I should be leading. I was tired of pretending to be well for everyone else when I really wanted to live in wellness. And there were times where my dearest hubby was on Red Alert- certain I was going to call ‘mercy’ and beg to be taken to the ER. That just wasn’t fair to him. My soul was weary of it all.
Life is not a contest of the strongest, but my last year with a j-pouch certainly felt like one.
With all the not sleeping that was going on I had plenty of time to think things out. I couldn’t live like this. I wanted my life back. I wanted my husband to be less stressed and worried. I wanted my kids to grow up with a healthy mom in their life. I wanted them to grow up with happy memories of me interacting with them versus always being too sick to play. It was time to give up on the j-pouch.
I met with my surgeon and asked to have a permanent ileostomy. She agreed that it was the best choice. Three weeks later I went in on a Friday, and came out the following Monday a permanent ileostomate.
It was like my body was waiting for me to make the decision. My surgery went perfectly. My scars were beautiful. I was given a perfect, perky little stoma. My mean rectum was gone and I felt brand new. Standing there in the hospital shower after surgery I looked down at myself and laughed because I realized I could not poo myself anymore. It was that joyful, lifting feeling you get when you fall in love. But I was re falling in love with me. I felt like twirling but resisted because I was wet, naked and soapy. I think with all that pain I had, the vision I carried of myself was scary. Now that painful, scary view was gone. I was in no more pain. I got out on the fourth day because I really was feeling that good. (My surgeon proudly called it ‘scandalously early’ and credited all my walking, low use of pain meds, and good spirits to my early release.) And why not? I had great support at home to recover in my own comfortable environment. I also was familiar with how an ostomy worked. (I was quite excited to see how much ostomy gear had improved since the last time I needed them and knew everything was going to work out just right.) Plus it was hard to play with my kids in the hospital. I did not intend to miss any more time with them than I had to. And I am still doing that today. I am a devoted wife, stay-at-home mom to a 3yo and 6yo, assistant organizer of my play group, mom n’ tot swim class, home schooling, not afraid to get dirty, camping, playing with kids on the floor, awesome gardener, stack the wood and rake the leaves, super active, healthy person.
Crohn’s really kicked my butt. But I won!
I share because I know there are others out there going through the same issues. It is not always easy, but it does get better. Now I advocate. There is no place for shame after the battle that I have been through. Each one of us has a story that is detailed and inspiring.
I advocate so you don’t feel alone.