Hi everyone! Just joined this forum, seems like a good support group and great place to ask questions! Here's my story... I am 22 years old, was diagnosed with crohns when I was 17, I was scared to talk to anyone about my symptoms at first because they were embarrassing. I had started developing hemorrhoids for a couple of years, but never said anything, but then started getting pain because of a peri-anal abscess that was developing and had broken the skin and freaked me out!
So went to a gi, there was only one Dr in my area that would see a pediatric patient for crohns even though I would turn 18 the next year. He performed a colonoscopy, took some biopsies and confirmed crohns in my small intestine and noted the hemmys. We weren't confident in his abilities but had no choice. He prescribed Asacol that I didn't take bc I hated taking pills. And also I was terrified of having to go to the doctor all the time and get rectal exams, so I lied to the Dr and my parents and said the medication was helping, so I wouldn't have to go back for awhile. My parents changed jobs so we didn't have insurance anymore, and since I was doing okay in their eyes, they didn't see a need to get insurance right away.
A couple years go by and I got pregnant at 19. I then got on Medicaid because I couldn't afford it on my own, and didn't want to ask my parents. My crohns symptoms had progressed to very severe external and internal hemmys, and the abscess would close up for a month or two, then get swollen and really painful, and open back up in a slightly different
spot (like 1/4 of a centimeter difference). Was closed pretty much my whole pregnancy, and was going to try to do natural birth, but towards the end of my pregnancy the abscess was starting to get painful, swelling up, and on my due date had no signs of labor yet, but was running a fever because of the abscess, and was in excruciating pain. It finally started draining overnight and I was so relieved, but when I went to the gyno in the morning for my appt they decided they wanted to do an emergency c-section because of the drainage.
Had my beautiful baby boy, then next day some surgeon drained the abscess and stuffed it with gauze string, and I went back every day to have it re-packed for about a month until it closed. It re-opened about a month later, so I tried to get established with a gi, but then my Medicaid was up.
So fast forward to now, went all this time without being under anyone's care or being treated.
Symptoms now are extremely severe hemmys, fistula, and I feel like another one is forming on other "cheek" Got on insurance, saw a different gi who was recommended by several people, just did a colonoscopy and endoscopy on this past Thursday August 21st (I take a high amount of ibuprofen for pain management so he was worried I may have caused damage) results were everything is completely normal for upper endoscopy (yay!) and colonoscopy found moderate crohns in colon, rectum, and anus. And they took some biopsies. He was very optimistic, thought it was going to be much worse thn what he found, and was surprised that I am not affected in my small intestine lol. He thinks it should be easy to control with medication, he's thinking humira or remicade. But I have a pelvic and abdomen CT scan on Tuesday so he wants to see results of that first before we make a treatment plan.
So right now, I'm starting to track my food and symptoms, I have always struggled with loose and frequent bms (like 5 times a day on average) and a lot of the research I'm seeing on diets for fistula is high fiber, and I don't want to be going more than I already am! Does anyone have any advice or experience they can help our with? Or just letting me know that I'm not alone, because it sure feels like it when you're struggling with something that is private and not exactly pretty. Thanks in advance!
Oh and also I am anemic, and get nauseous/dizzy if I have to stand up without really moving for more than 15 mins (makes showering difficult)
