Introduction to Kevin:
35 yr old Male, diagnosed with Ulcerative Colitis in January 2012. Under control with presdisone and asacol until October 2012. Was in 6 month flare that got progressively worse in April. Had surgery to remove colon May 3rd.
Some more about me:
Married father of four, love outdoor sports
My pre-surgery symptoms were pretty standard, multiple loose BMs x day with bleeding, abdominal pain, joint pain (prob due to being on prednisone for 6 months).
BMs were worst at night and morning. Can’t seem to make it through the night without a few (like clockwork at 2 and 4 a.m.). Usually 3-5 events before I leave in the morning.
Shouldn’t I Feel Happy After Surgery?
So my last story (April 17, 2013 – “New to this Disease…Tired of it Already“) was about my inability to gain control of my UC and my frustration even though it had only been a year since diagnosis and I know so many of you have lived with it so much longer. My frustration led to my decision to have surgery to remove my colon on May 3rd. It has now been a week and I have a number or questions, thoughts, etc. that I am looking for some input on from the group. It is probably easiest to put them in list form. Feel free to answer any or all:
1. Did others who had the surgery second guess themselves afterward and think maybe they made the decision to0 quickly (again I only had the disease for a year)? I tried 6MP, Remicade, and all the other drugs. Should I have tried fecal transplant first?
2. Is depression normal after surgery? I can’t put a finger on the feeling other than to say it is a “funk” that I can’t shake. It is by no means to the level of wanting to do harm or anything like that, but sometimes i want to just sit and cry for no reason. If others have experienced, how long does it last? Does it go away and then come back after the second surgery?
3. What did people do to keep themselves occupied while they were off work recovering from surgery? I think part of my depression is that I am so used to being busy during the day that now I can’t find enough to keep myself occupied and my mind just wanders.
4. One week out from the surgery I have had different physical effects such as chills, cold sweats, etc. Did anyone else have similar or other symptoms that were not described prior to leaving the hospital? I think part of it is that I may have tapered my prednisone too quick. What has been your experience with the prednisone taper? I have read than going from 40mg to 20mg can be done about 5 mg per week but from 20mg to 0 takes much longer, perhaps 2.5mg per week. I am at 20mg right now.
5. Speaking of the hospital, was anyone else not provided sufficient information prior to leaving the hospital. For instance, I had no idea I would still be passing anything through my rectum, I thought that was closed off for all intents and purposes. However, almost everytime I urinate, I pass something. I was able to go online and find out that it is normal but it would have been nice of them to tell me.
6. How long did most people spend around the house before they felt confident going out in public for extneded periods of time? I am not talking about confidence with the appliance. I have no issues with the bag, I can dump that thing with the best of them, anywhere, anytime. I am more talking about feeling strong enough to go to the mall, hang out at others’ houses, etc. I feel like maybe I am pushing myself by trying to do too much too soon but I hate sitting around the house (see prior point).
7. I am having a 2 stage surgery, how long was the time between the first and second surgery for most people? I have a follow up appointment soon and would like to know what to expect.
I alslo have a lot of questions about the second surgery but right now I am just trying to make it that long. It seems like I have more questions that answers and that is not how I prefer to operate. Any insight you can provide into your experiences would be greatly appreciated.
I tried them all and opted for surgery. Hopefully it was the right decision.
written by Kevin
submitted in the colitis venting area