I am a new member and can completely understand where you are coming from. I have had Crohn's since I was 17 years old and am now 33. I had a terminal ileum resection in '94 and other than that have not had to undergo any further operations...until now. Last year I began having a perianal abcess come and go and had to have many incision and drainages at the surgeon's office. I had this done the first year I was diagnosed with Crohns but it had been "dormant" until last year... Finally, on October 12th ( a few weeks ago) and after much hesitation and fear, I had a partial fistulotomy with a Seton drain placed. And, after years of trying to avoid Remicade, I was forced to come to terms that it is my only option now to hopefully close the fistula. I have had two treatments and have done very well so far with the Remicade. They hope to see closure of the fistula after my third infusion and hope to pull the seton at that time. If it returns, then I will have to go through this again and might have to have a cutting seton. I will be honest and tell you that the surgery hurt...I would rather have had an abdominal surgery or a million c-sections over this...and I am still in pain and having to take more pain medication than I did before the surgery. I only tell you that because I wish someone had told me so that I wasn't so hard on myself. I had read so many posts that peolpe were not in pain and it made me feel awful like I had a low tolerance for pain after all these years. But, after speaking with the surgeon, he said it was a very large fistula that he had to remove and could only remove part of it to preserve my sphincter and avoid fecal incontinence. It still hurts and although the Seton is not as "noticable" I still feel it and am uncomfortable. The pain has been very bad recovering, a deeper pain like before I had the surgery and I am still not back at work. The surgeon told me this pain was to be expected because the area is so tender and as he said " I would not want to have done to me what I had to do to you". However, even after all this, I do recommend having the Seton if the abcess continues to reoccur. I have cried and wished it was out of me but I see the drainage and know that this is my only option right now. I have a 2 yr old little boy and I did have my family help me with him the first week after the surgery. Please let me know if you have any other questions and I can try to just be there to listen to you if you need that. Good Luck with your new doctor. I trust mine with all of my heart and it is the one thing that reassures me when things get bad...
I want to welcome you to the Forum! I am so sorry you have to deal with this! I am sure having a high level of anxiety makes it more difficult. I know from personal experience how scary and disturbing it is to have a large incision down there and the drainage. It can take a long time - months to heal is if ti large. Everyone's situation and healing time is different, and please keep this in mind when you read the posts on this Forum.
Drainage is quite normal and goes on for a long time. It is your body's way of flusing our the bad stuff from your tissues. Remember the abscess was a big infection and your body needs time to flush it out, replace all the damaged tissue, and heal the incision. Staying on anitbiotics is necessary for some people but not all. It just depends on how much infection your doctor sees. FLuxuations in temperature are also a normal part of the healing process. But call your doctor if you spike a fever for more than a day. Sitz baths really promote healing (and calm the nerves). Sit down in a tub full of hot water 3 - 4 times a day for at least 10 - 15 minutes. The hot water gets your blood flowing to the damaged tissue which helps heal. I use a hand held shower sprayer to keep the area clean. I strongly recommend using one!
I understand the reluctants to use drugs. Unfortunately, if you have Crohn's Disease (CD) your incision and abscess area will heal more slowly without drugs. Fistulas make things worse too. CD causes inflammation in the body and healing is hard when tissue is inflammed. You have to way the risks of taking the drugs with the benefits of taking them. It is a personal choice. Many peopledo very well on Remicade, Humira, or 6 MP.
I also suggest you check out the other HealingWell Forum on Anxiety. Having an rectal abscess means you are in the healing process for the long haul and honestly we all need to learn patience and how to keep our anxiety under control. It is very difficult! I am pray for your swift healing, and peace for your mind and body!