Hi everyone. I have never posted here before and don’t know if anyone can offer any advice or help but I am feeling pretty down and very frustrated. If you aren’t in the situation or have not been before, try as you may, you really can’t truly appreciate the number active crohn’s does on your body and your mind. My husband tries but how can he really understand. He sees me hurting and doesn’t know how to help me or what to do.
Anyway, in March of 2009, out of the blue I ended up with hemorrhoids….worse than I’d ever had. I went to my regular doc who referred me to a Colon and Rectal specialist because of how severe they were and the amount of pain I was in. I had never had an issue with them before except for when I was pregnant with my daughter in 2001/2002. Anyway, he said they were bad and would operate the following day. He operated and removed them and explained that it’s a painful recovery but to follow his directions and I should heal in several weeks. During this time, he saw me regularly to check my progress. He was pleased with the way I was caring for the wound and said it was clean, etc. but was still concerned at my serious pain level, the swelling back there and the lack of healing evidence. Well, about 3 weeks passed and I still was in lots of pain and not healing but had begun having severe pain and swelling on the right side of my bottom and was running a fever of close to 104 off and on. I went back in and they did a CT to see if I had an abscess and nothing showed up but the same surgeon suspected I did have one they just couldn’t see. So, he scheduled me for exploratory surgery the following day and stated he would drain it if he found one. They did surgery and did find a large abscess. Well, the healing this time was no better. It drained and such and I kept it wonderfully clean but it didn’t heal. After a few return post-op visits, the surgeon asked if I had ever been diagnosed with Crohn’s or if it runs in my family. I explained no on both counts. He said that if we could get my bottom to heal up enough, he would like to do a colonoscopy because he suspected I might have Crohn’s evidenced by the fact I was struggling so badly to heal. In addition, I had evidence of Erythema Nodosum on my legs horribly and was beginning to get stiff in my knee and ankle joints and the joints in my hands….to the point I was struggling to walk. (Mind you, I was only 34 at the time!!!) Well, in June of the ’09, he did a Colonoscopy and found evidence of Crohn’s in my ascending Colon, diagnosing me with Crohn’s Colitis. They did an upper GI and Endoscopy as well and found nothing. I have inflammation in the rectum as well. He referred me a GI doc and I began a high dosage of Prednisone, 6 MP, Flagyl, Colazal, and Calcium supplements, and Probiotics. After about 3-4 months, the abscess wound did finally heal up and I slowly got better but the meds EXHAUSTED me and made me sick to my stomach. I did wean off the prednisone and was only taking the 6MP and Colazal. Well, due to differences with the GI doc, I shopped for a new doctor and found a good one. He switched me over to Lialda and advised since I was in remission that I could come off the 6MP since it made me so sick but that I may end up back on it in time or another form of treatment. So, I had no trouble other than the occasional belly ache or run of diarrhea every once in a while until…….
July 2011 – I began getting the worst mouth ulcers I’ve ever had. …to the point I could barely eat. They continued to get worse and my belly was “iffy” at best. So, I made a GI doc appointment. My regular doc could not see me but I saw his partner who put me back on Prednisone at a lower dosage and did a stool test and blood work. My CRP and Sed rate were slightly elevated but he didn’t seem too concerned. Well, the mouth ulcers came and went and then about 2 weeks later, I began having a pain in my bottom similar to the abscess I had before and in a matter of a day and a half it had come back in the same spot and was more painful than ever and I called the nurse back. They prescribed Flagyl and Cipro and made me an appointment again with the surgeon. So, I went to see him and he scheduled me again for an abscess drainage. Well, by the time surgery rolled around the following day, I could not sit at all and was in the worst pain I’ve ever known. After the surgery, the surgeon spoke with my husband and told him not only did I have the abscess he knew about but he found another large one behind the muscle wall in the rectum that he did not cut into for fear I would lose bowel function. Instead, he put a drain in to try and save my bowel functionality (THANK GOD!) and also put a seton in place as he found a fistula had formed. He said the seton and drain could be in indefinitely. Well, I have now had 2 post op visits and during the first week could not hold my bowels at all and that made for a really bad mindset on my part. I took lots of hot baths and have kept it very clean. Spoke with my GI doctor who is now working with my surgeon to determine when the wound is healed enough to begin Remicade or Humira to try and put me in remission and deal with the fistula and recurring abscesses. I’m not in the amount of pain I was, but it has been 21 days since my drainage surgery. When I have a bowel movement, I am doing better holding it to make it to a bathroom but it sets me back quite a bit pain-wise. I’m still exhausted and not wanting to eat much at all. I went back for my 2nd follow up with the surgeon yesterday and he said it looks extremely clean and is still draining which is what he wants to see but he said I was not healing well and he expected that due to the Crohn’s. Anyway, he said he wants to see me back in another 2 weeks and will determine if he can give me the go ahead or not for the Remicade or Humira. When I asked him about when he gives the go ahead would I have to be concerned about the meds blowing up the infection and he said “All I can tell you in 100% certainty is I hope not, I really do, but we can’t guarantee it.”
I’m frustrated at what lies ahead. I’m young….36 years old with a new husband, a nine year old daughter and 2 step sons. I want to be healthy and still be my active self and enjoy life, which I have not been able to throughout this. I’m frustrated. He did put me back on Flagyl just as a precaution until he sees me again in 2 weeks. Anyway, I know that my husband must be growing weary of listening to my concerns and hearing me cry at times when I am in the bathroom. My daughter tries so hard to understand but she doesn’t really grasp it. I don’t want to stay like this. Is there any hope for healing? Any advice on what I can do differently? I want my life back!
Thanks.
Nicole