I was diagnosed 6 years ago with UC and it has been a roller-coaster since that time, to say the least. I have had at least 4 colonoscopies during this time, with my most recent in December, 2013 (which showed “life-threatening inflammation” in which they could not find any “normal tissue” in my colon). I am currently facing a dilemma in which I must choose another (potentially dangerous) maintenance med, or get a FULL colectomy due to the consistent inflammation throughout the ENTIRE colon each time I flare (it is never just a small section; it always covers the entire length of the bowel).
Some more about me:
I am a 27 year old Kentucky man (boy at heart) that loves the outdoors (hunting/fishing), crossfit, running, golfing and basically anything I can do outside that involves toys :) or physical activity. I have a Master’s Degree in Public Administration and currently work as a freight broker. I don’t like to let anything slow me down; and I am not going to start now when I am just beginning my professional and adult life (I want children, money, toys, activities…the whole 9 yards)!!
Blood/cramping/pain/nausea/fatigue/constant “urge to go”/multiple (up to 20) BMs a day (when not controlled by pred)
Surgery for a Young, Active Guy?
I will try to keep this short and sweet, and hit the “high notes” throughout my 6 year battle with UC and finish with a few questions for you experienced and new UC’ers out there, as well as offer my help/support for those recently diagnosed.
I was diagnosed 6 years ago during my last year of undergraduate work at the University of Kentucky. I didn’t think much of it at the time, because honestly, I just didn’t care all that much. I was too stubborn to realize the long-term impact this disease would have on my life, and I was even hesitant to call it a disease at first. I took pred to get my initial flare under control, continued with my life of partying, drinking (not too much, but just enough for a good college student :) ) and planning my future and started on a 5ASA as a maintenance med. This helped for a while, but then I was diagnosed with extremely painful pancreatitis (my first of 4 bouts, currently). I was not drinking or eating bad at the time, so they believed it to be linked with this medication, but couldn’t tie the two directly together.
As I got this flare under control, got the pancreatitis taken care of and continued to live my life (start a career and grad school) I then switched to Imuran which worked for about 3 months until, again, I got a terrible bout of pancreatitis which was directly linked to this drug (they tested this during my hospital stay and confirmed the link).
After this I was switched to Remicade (very reluctantly at first), and I hated it, but it worked. I don’t know about those of you who have had these (insanely expensive) treatments, but I felt rundown, tired, especially fatigued a few days after the infusion and it eventually stopped working. I went to the Cleveland Clinic following this failure and went on pred yet again, as I was fast approaching my wedding and honeymoon. The pred did the trick, as it usually does, but with all the annoying, painful and irritating side-effects.
Eventually I decided to try a mild anti-anxiety medication because I had heard these were effective in calming down the nervous system, hence calming down the stomach irritation that comes with stress and anxiety. This is important to note as I and others consider myself a nervous person, generally, so I really think stress is a factor (that is downplayed by GI doctors, as there is no “scientific evidence” to fully back this theory (yet)) and needs to be monitored closely. These meds, and no GI meds whatsoever during this time kept me symptom free for almost two years! That was until my wife and I decided to move and I completely changed my career course, and I have no doubt that this stress started my most recent flare (and the most serious to date).
All of this (obviously a very shortened version) has led me to the dilemma I currently face: I am on 20mg of pred currently, and I hate it but it is buying me time to choose between the only two options I really have left to control my symptoms. These options are Humira and full colectomy. I have kicked this around with my wife and family, and it is a very scary situation. I really don’t know whether I want to go down the road of Humira facing potentially dangerous side-effects, huge costs, missing work intermittently (as I just started a new career and have already been out over 30 days in less than 90 days of employment due to a 17 day hospital stay a few weeks ago), and the good possibility that the med will stop working at some point anyway thus facing pred again, more work missed due to another hospitalization and multiple doctor visits, etc. (**I do try to be positive, but every med I have taken to this point has stopped working or made me very sick**).
This is why I am seriously considering the surgery as I currently do not yet have children, do not have my own accounts to manage/babysit/improve at work yet as I am still training, I am not in school and my responsibilities are probably more limited now then they are going to be in the future. I am concerned about the issues of surgery itself, those normally associated with major surgery such as impotency, the fact that I may have to use a bag forever if the J-pouch fails, dangers of the surgery, recovery time, multiple BM’s a day, etc. but after reading many helpful posts on this site it seems people really are enjoying life again following recovery/surgery.
So what do you all think?
My most recent hospital visit (just got out about 3 weeks ago) left me battling pancreatitis (again), c-diff and a MAJOR flare of my UC (in which a colonoscopy showed “life-threatening” inflammation) and the only thing stopping me going back into a flare is the pred (which I hate more than anything!) Did I mention that I tried apriso (another mesalimine) and that is what caused my pancreatitis which sent me to the hospital and managed to also contract c-diff during that time? The docs now believe that something in these medications cause an allergic reaction (essentially), hence cutting down my options of meds to choose from, greatly. I am leaning towards the surgery, and meet with a highly-regarded co-rectal surgeon in just over a week. My medication options are limited to say the least, and I feel like even if I have to keep the bag and something goes wrong with the internal pouch it still may be a better choice in the long-run for m any reasons.
My experiences with UC have taught me some amazing life lessons at a very early age, and I really haven’t let it slow me down at all (until the most recent bout, probably due to the severity and the fact that it came on with two other major problems at the same time). Problems at work, stress from bosses, etc. are nothing/small potatoes when I have faced life-threatening problems created by UC and have lived with/currently live with the pain and problems caused by this disease (points the normal BS of life into a good prospective). I no longer drink (I stopped pretty quickly after the initial diagnoses and after getting out the college atmosphere) and I have started eating gluten free as well to see if it helps, even though I do not technically have Celiac’s Disease. I would be happy to share my experiences to anyone who wants to listen/looking for some support as I have been through the ringer multiple times with this disease (way too much to keep typing about i n this story), and I hope that someone can tell me about their experience with surgery as I am just starting life, still want to have children, still want to remain extremely active (cross-fitter (not recently), runner (not recently), broker (fun, but stressful), hunter and fisherman) and would hate to be slowed down!
Pred :( (currently, and I hate it, but it works when your life is on the line, so to say)
Pain meds as needed (also hate them, but they help when you need them)
(I have tried EVERY 5ASA/mesalamine available and Imuran (all of which gave me pancreatitis!!). I also flared on Remicade within a year)
I have used every drug available to treat UC (including some anti-anxiety meds (which really helped for a long period of time, and I still believe them to be useful!), with the exception of Humira and I am not sure that I want to start down that road again
written by Jake
submitted in the colitis venting area