Posted 6/27/2016 5:52 PM (GMT 0)
I've been reading these boards for a few months and has found them very informative and at times very frightening! I have been trying to ignore this whole thing, but it's becoming very obvious that I can't.
Some background information:
I was diagnosed with UC in 2010 when I was 24 years old. I had been having some episodes of diarrhea on and off and then started to notice blood while wiping. I ignored it for a week or two hoping/praying it would go away, and then finally made an appointment with my doctor. I was sent to a GI and had a colonoscopy done. At that point, the GI said he suspected it was proctitis or proctosigmoiditis, but told me I should wait to see the pathology report. The pathologist noted that the histological findings were consistent with acute self-limited colitis and that infectious colitis was favored. The GI had given me a prescription for lialda, that I never started because the symptoms started to clear up after the colonoscopy.
Over the next 6 years I was mostly okay. There would be small issues that would pop up after antibiotic use, or other random times, but the symptoms never lasted more than a few days and always cleared up on their own without any interventions. I honestly never even thought much about it. It had basically no impact on my every day life, that I usually forgot to even mention it if a doctor asked me if I had any health conditions. I certainly never would have considered myself to be afflicted with a chronic illness.
Last july I found out that I was pregnant with my first child. It never even crossed my mind that colitis would be of any issue. During my first trimester, I had diarrhea for about 2 days and an episode of tenesmus and a small amount of mucous, but as usual, everything was back to normal within the next few days. Everything went smoothly until the middle of my second trimester when I started seeing blood when wiping. I initially waited a week to see if it would go away on its own, as it usually did, but it didn't go away, the amount of blood started to increase. I made an appointment with a GI doctor and had a sigmoidoscopy done. He diagnosed it at proctitis and gave me Rowasa to use. I was very hesitant to take any medication while pregnant, but I was also worried about how all the bleeding was affecting my pregnancy, so I started using the enemas. They cleared up the bleeding immediately. I used them for a few weeks, and then started using them every other day and then I completely stopped using them. This obviously was a stupid idea, but I was doing so much better, and I really wanted to limit the amount of drugs taken during pregnancy.
Then three weeks before my due date, almost out of no where, I started having diarrhea about 7-8 times a daY, with very little mucous and no blood. It really threw me for a loop because I had never experienced this before. I tried to start using the Rowasa enemas again, but they did not work as quickly as the last time, and I started getting really stressed out. If I had been further from my due date, I may have given it more time to see if the Rowasa would work, but I was terrified that I would still be having this horrible diarrhea when I went into labor. The fear of pooping on the table is nothing compared to the fear of having explosive diarrhea while in labor. At that point, I was a complete mess both mentally and physically. My GI called me in a prescription for Lialda and I started taking 4 pills a day, and my symptoms went away by the next day. I went back to going to the bathroom once a day, but the poop never went back to being completely solid. They were well formed, but still soft. I decided I obviously needed to stay on the Lialda and with the okay from my GI, OB, and pediatrician, my plan was to breast feed my daughter.
At about a month old my daughter started having mucous in her poop and my pediatrician advised me to stop taking the Lialda as she thought that may be causing the problem. I stopped taking it and was fine for about a month and a half and now I'm starting to have soft stools again and I've gone to the bathroom about 3 times this morning. It turns out she had a milk protein allergy and after cutting dairy out if my diet, she's been better. I took 2 Lialda this morning and will monitor her for any changes. If she doesn't react in the next two days I will up the dosage to 4 and will monitor again for changes. If she reacts to the Lialda, I have finally accepted that I'll have to stop breast feeding. It absolutely kills me. My plan was to try to make it a year and I feel like such a failure if I have to stop at 3 months.
I'm really hoping that my hormones have caused this to become unmanageable without medication. What are the odds that this will calm down and go back to how it had been once my hormones finally regulate? My GI seems to think it's very likely, but from reading this site and others, it appears that normally this continues to get worse as time goes by.
I'm also worried about being on the highest dosage of Lialda right now. What if I start flaring again? What other meds will I have to take?
This whole thing is overwhelming and upsetting. I feel so terrified for my future and the possibility that my daughter will inherit this from me. No one in my life seems to understand how upset I am by all of this.
I realize now that I've barely even asked a question and I've rambled and rambled. If anyone actually reads this, thank you. I guess I was just looking to get this off my chest with people who understand. My husband and my mother are trying to help, but they keep saying all the wrong things.