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New to the Site and Feeling Down. Looking for support from people who understand

Hi fellow IBD suffers,

Mine is a story of CD, fissures, and fistulas. This post is a little long so thank you for those who stick it out and read my story because I could really use some support from people who really understand.

I was diagnoised with Crohn's in May 2010 when I was 20, but I had been suffering from symptoms for about a year before. I knew there was a good chance of either CD or UC, because my gradmother has CD and my grandfather had UC (he had his colon removed).

At first my case wasn't too terrible. My first colonoscopy indicated that I had a mild form of Crohn's Colitis. My doctor put me on 4 tabs of Lialda SID and 40 mg of pred. that I was tapered off of over a period of 3 months. After this treatment I was feeling pretty good for about 6 months, but then started having problems again. I knew something wasn't right when I would get 102 degree fevers and have to sleep all day to feel better for weeks at a time.

Still I didn't go back to the GI right away. It wasn't until I was driving to a zoo where I volunteer and couldn't get off of the express way in the city and had an accident (boy did that feel like a low point) that I decide that it was bad enough to go back. (By the good grace of God, I happed to be leaving for a trip right after my shift at the zoo so I had an extra pair of clothes and always carry wet wipes with me.)

I went for my second scope in Sept. 2011, and found out my case had gone from mild to severe. Ever since life has been pretty miserable. I was put on 40mg of pred again as well as 100 mg of Imuran. Still by Feb 2012, things were not going well so I was upped to 150 mg of Imuran and suggested to go on Humira. Unfortunately, after fighting with the insurance company for months, they still won't cover Humira so around the end of March I was put on Cimzia.

The Cimzia has partially helped some of my Crohn's symptoms, but in Feb. before I started the medications, I had developed a fissure. I thought it was just problems with hemorrhoids. Even though I complained about intense pain at the rectal level while having a BM, my doctor didn't seem too concerned about it. He won't even look at it in the office, he just said that as the cimzia helped me heal the pain would go away. Finally after landing myself in the ER in March because the pain was so bad nothing made it feel better, the fissure was identified. My GI gave me some diltzam cream with lidocaine that was supposed to heal it, but no dice. The pain kept getting worse too.

Finally in June, I called my GI and told him that the pain was too much, I've had this fissure since Feb. and I wanted it gone. We set up an appointment to get botox injected into it. Cleaning out for this procedure was the worst pain of my life. Anyhow, during this procedure, it was found that I have a fistula as well, and that was what was causing the intense pain. Not to mention, I had absolutely no energy becasue the infection is causing me fatigue.

Because my fistula had not tunnelled all the way to the surface of the skin yet, my GI suggested treating it with antibiotics. Those didn't work so then he referred me to a surgeon to get it lanced. By the time the surgeon saw me, it had made its way to the skin. The surgeon set up an appointment to do a fisulotomy. Even though I was very nervous for the procedure, I was also excited because I was ready to be done with the pain. It hurts to walk, it hurts to sit, it hurts to laugh, sneeze, cough, fart, poop, and bend. Laying in bed in the only time I don't have pain. This is not a normal life for a 22 yr old to have! Also, I am starting Veterinary School in August and I wanted to be well on the way to recovery before I have to leave for school.

Yesterday, I went in for an exam under anesthesia to figure out the way the fistula tract lays and the fistulotomy to correct it. After I woke up from surgery, the surgeon came in and told me that because of the way my tract lays, they couldn't do surgery. It was located in such a way that they would have to cut my anal sphincter and I would be permanently incontinent. So basically I have to live with the pain for the rest of my life. He suggested going on remicade to try to keep the fistula at bay.

Even though CD is terribly inconvenient, I rarely feel down because of my disease. But I feel so hopeless right now. It just seems like one thing after the other. First it's CD, then it's a fissure, then its a fistula, and now it's a fistula that is never going to go away. I don't know how I am going to make it through Vet School feeling like this. The pain makes it hard to concentrate and I feel fatigued all the time. I don't want to put my dreams on hold because of this stupid disease. My spirits are so low right now.

I know there are people who probably have it worse than I do, but right now, I can't help but feel depressed :(
Welcome! What your suffering with would cause anybody to feel hopeless and I'm glad you've reached out. Although I don't have a fistula, suffering with fatigue, pain and the thought of a lifetime of this... can be very depressing. But we can cope and hope for the best! You're not alone and although it might take you a while longer to get through school, you can do it! Think positive and know that you're not alone.


Naples, Florida
Hi there and welcome to the community :) Thank you for sharing your story but I am so sorry to hear of all your troubles :(

You DO NOT have to live with that pain the rest of your life. If I was in your position, I would go on Remicade AND at the same time do total enteral nutrition. The two combined would have a pretty good chance of closing the fistula. Research enteral nutrition then discuss the idea with your doctor if it intrigues you.

Oh, and with that fatigue, I have to ask if you've had your vitamin D and vitamin B12 levels tested. People with Crohn's Disease are commonly deficient and deficiency can contribute significantly to fatigue.

We're here for you!
Hi, I'm so sorry to hear about what you're going through! I feel your pain! I had a fistula when I was a teenager, and it was awful. Thank God, I had it surgically removed and been ok ever since. Maybe you should try a different type of medication or even alternative treatments. Chinese medicine doctors are worth checking out. I hate drugs because they don't always work and they have side effects. I hope things get better for you. You are definitely not alone and you don't have to give up your dream because of this awful disease. Stay strong.
Welcome to the forum. I'm with David, you DO NOT have to live with the pain for life. I've had as many as 3 at a time, leaking, stinky, painful, itchy little &#%? A combination of metrozonidole/ciprofloxin or longer, higher dosage of just metrozonidole if you have infection, witch hazel on tp for wiping and soothing, diet modification(whatever works-enteral nutrition, soft foods(cook everything to death), ginger/ mint teas for soothing the gut and soul, alternate your sitting, standing, walking routine during the day -think halfhour intervals and Remicade or Humira (which works for me, yipee, only one fistula in 1 1/2 yrs) It WILL get better. Have a good cry or scream and start fresh. We're here for ya.