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Date Joined Mar 2007
Total Posts : 111
Posted 4/8/2008 11:27 AM (GMT -6)
Ok, it's not like we didn't see this coming, but no doctor has ever talked about
surgery and suddenly it's as if it's a foregone conclusion and that's that. Just sort of freaked me out. Plus the nurse was talking about
a grieving process and the amazingly difficult recovery period and how there's a special nurse to get you through it. If that's how it gets presented to my son he's going to run the other direction. I know the recovery is difficult and it won't be easy, but I have to think when it's all over, his life will be more normal again. Am I looking at this through rose colored glasses??
Mother of 18 year old son
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Date Joined Feb 2006
Total Posts : 5692
Posted 4/8/2008 11:50 AM (GMT -6)
I think GIs look at UC as something they can manage. And they do quite successfully. However, they do get the occasional patient who's UC cannot be managed by medication any longer. 20-30% of us with UC will have to resort to surgery. In my case my GI had never lost a patient to surgery and he was quite affected by giving up on me. But I also think it's a wise GI to know when to say they have done all they can and refer out. Any GI who manages UC with long term prednisone use should have to take the drug themselves! Surgery is hard, recovery is long, and life post colon is different. Yet for the vast majority of us we find this a very good life and are grateful to be healthy.
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
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Date Joined Jun 2007
Total Posts : 302
Posted 4/8/2008 1:13 PM (GMT -6)
Reality is definitely hard to face. I suffered way too long with ulcerative colitis. Starting out with proctitis and “progressing” to full blown ulcerative colitis took about
twenty years of suffering with intermittent periods of remission. I was in denial about
what my doctors were telling me concerning this disease. I would rather take massive amounts of prednisone and asacol than even think about
surgery. I took prednisone practically all of my adult life. It didn’t matter that I would puff up like a giant marshmallow and bruise at the slightest bump. It didn’t matter that 6mp caused my liver enzymes to go crazy and I was too tired to take a step. I didn’t want to hear any talk about
surgery. I thought I could handle it. When I think back, I don’t know how I did handle it because I had a husband, three small daughters, and I worked full time in a very stressful profession. It finally took a diagnose of dysplasia in my colon to make me realize that surgery was the only answer. Having witnessed both my parents dying of cancer in their early fifties, I knew my denial had come to an end. I had surgery this past summer. However, because I waited too long, I was not a candidate for J-pouch surgery. My life has changed for sure, but it isn’t as bad as I thought it would be. And for once in a long, long while, I am not taking any harsh medicines that make me look and feel so horrible.
Post Edited (nene205) : 4/8/2008 1:55:58 PM (GMT-6)
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Date Joined Sep 2007
Total Posts : 113
Posted 4/8/2008 3:55 PM (GMT -6)
Lew: I'm a 23 year old guy who had UC since I was barely 19. I was able to stay in remission for almost 2 years before having an almost 2 year long flare. I must say that I fought tooth and nail to stay away from surgery. I tried all the various drug classes, and the majority of each drug in those classes. At least the ones approved for UC. It was hard choosing surgery, and ( I can say this now) I feel like I made the right choice. My initial surgery went very well, however I did have some serious complications (see previous threads by me for details) that had me back in the hospital for weeks. At that time I felt like I had made a huge mistake in having surgery, the recovery was very hard, even for someone as young and in relatively good health as myself. I'm still at my parents home today, recovering from those original complications. In this past week though I've noticed, even with the drastic changes that have taken place in my body, that I feel better than I ever did in that 2 year long flare. Most people I have talked to say they feel this way very soon after surgery. For me it was disheartening to not feel it as quickly, but now that its come I know I made the right decision. I would also consider your son's home care and insurance options if he waits until he is older and possibly on his own. I was fortunate enough to still be covered by my parents coverage and still within driving distance of their home so I was able to receive excellent care at the hospital and then at home. These are two very important factors in my opinion when it comes to younger people in their transitional years considering surgery. I hope this helps and your son finds relief in whatever he chooses.
Diagnosed Fall of 2004
(Scheduled for Stage 1 of IPAA in late February:Complete!)
Prednisone (5mg taper)
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Date Joined Feb 2007
Total Posts : 420
Posted 4/8/2008 4:58 PM (GMT -6)
Like others, I also did not commit to surgery until it was not a choice anymore - it was either die, or have surgery. So, out went the colon. I will say, my recovery was hard. Physically, I had a couple very minor setbacks, but I did okay. Mentally was the toughest for me. I am normally a very upbeat happy person. I have dealt with this disease since 1999 and always did it with a smile. My GI always said I had the best attitude out of all of his patients. So, I wrongly assumed that the physical recovery was all that I would have to overcome.
Well, not so. There IS a grieving process. I, personally, believe it is important to let the grieving happen. Trying to bottle up, like I did at first made things so much worse. I wanted to be "tough", and my refusal to admit I was having a hard time made my physical healing tougher. This surgery is life changing, losing your colon and pooping into a bag is not something that comes naturally! However, once I began the grieving process, and allowed myself to grieve properly, I got better.
So, yes, this surgery is tough emotionally. But, it is a proces, and once it's over, LIFE IS GOOD! I wish I had done this suregery years and years ago. My life may not be normal, per se, but it is now normal for me, and sooooo much better.
If at first you do not succeed, then skydiving is surely not meant for you.
Jo - UC, total colectomy and ileostomy on August 24, 2008.
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Date Joined Dec 2007
Total Posts : 739
Posted 4/8/2008 5:22 PM (GMT -6)
my surgery was a last resort too. I'm 26 so my confidence and body image got shot after the surgery. But my recovery wasnt bad at all. Rather quick actually. However, i do have crohns and not uc, and i still have my colon. Also my surgery was done laproscopically, i dont know if thats an option for him.
I have decided tho, that this was the right decision, im in way less pain, finally liking the weight ive been able gain back. It takes getting used to, but mental was much more difficult than physical healing for me. im still working on it, but im pretty close
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Worst year ever!
"For God has not given us the spirit of fear....."
Where does mine come from?!
Temp Ileostomy performed 1/29/08
Healingwell.com has been my Godsend...Thank you
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Date Joined Aug 2006
Total Posts : 6571
Posted 4/8/2008 8:09 PM (GMT -6)
well i replied in the UC thread, cause i didn't see this first, lol.
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Date Joined Feb 2006
Total Posts : 625
Posted 4/11/2008 9:15 PM (GMT -6)
if i wouldhave known how good life is postop, i woulda had this done long ago. i was 25 at surgery, 26 now. i'm doing things now i haven't done in 15yrs because of UC/crohns..my body image is shot i have to admit..it's hard with the hunnies! but hey, being pain free and being able to do anything anytime is pretty cool =D
Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis
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Date Joined Feb 2008
Total Posts : 79
Posted 4/12/2008 2:41 AM (GMT -6)
Sorry in advance for the long post, but hopefully it is helpful. This was my experience with my first of 2 or 3 surgeries. I tried to be as detailed as possible.
For me, surgery was my only rational option I was ready for it after 3 months after experiencing the full effects of UC and I believed the long term effects from the medicines for UC are worse than the disease itself. I was at a point where I figured death was better than just existing on a couch watching TV and sleeping 14+ hours a day and living in constant pain, tired, and in the bathroom 20 times a day and night. I barely managed to work last year. I have a government office job (had many leave hours saved up over my 8 years of working there) and missed almost 40 days of work last year and a very understanding group...they all knew I had UC. I didn't keep it a secret because really there was no way of hiding it. If I was in the private sector, I know I would have lost my job due to all the time I missed.
Anyway the clincher for the surgery for me was when my original GI doctor told me that even when in "remission" my colon cells may look normal during a colonoscopy and you may feel "normal", however your colon cells themselves are constantly inflamed...being attacked by your body. Your body wants to kill that organ and it will never stop as long as it is in there. Since these cells are constantly inflamed, they have a high chance of mutation 20, 30, 40+ years later. This is why the colon cancer risk is up to 32 times that of a normal person 20 years after the initial UC diagnosis. So my reasoning was, even if I find the magic combo of drugs/foods to avoid/natural herbs/vitamins etc, to put me into temporary remissions, my colon is never truly healed/normal and I may lose it anyway 30 to 40 years down the road because of colon cancer. I thought, why should I take these multiple drugs that damage my otherwise healthy organs/systems in order to try to salvage a defective organ that I can live perfectly fine without. So this is what made me decide to go the surgery route.
If considering surgery...do your research and find a good hospital and surgeons that have experience with j-pouch surgeries. I had/having my surgeries done at the Cleveland Clinic, where I should have gone in the first place after my initial UC diagnosis. You learn as you go!!! They first wanted to make sure I didn't have Crohn's before doing the J-pouch surgery (Dr. Shen was my GI doc). I had another colonoscopy (2nd and last one ever) and swallowed a small pill camera that took pictures of my stomach and small intestines every so many seconds and transmitted them wirelessly to a small computer that I wore around my stomach for 9 hours. I then sent the computer back to the CC via UPS. The pill camera eventually made it to the toilet and was flushed - you do not need to retrieve it!!! That was pretty cool. They did some blood work also. All tests eventual came back negative for Crohn's and I only have UC as far as they know and I was cleared for the j-pouch surgery.
My surgeon (Dr. Remzi) initially told me I would more than likely have the 2-stage j-pouch surgery. Surgery #1 being colon removal, j-pouch formation and loop ileostomy creation. I also had a very good chance they would do it lapriscopically, meaning no big incision and quicker recovery time. Surgery #2 being ileostomy reversal, but he added the famous words...I won't know what I'll do until I see what is going on inside of you. I should have thought...so I should be prepared for something different...but I didn't!!!
Anyway, the morning of surgery #1, I was so drained and didn't have any emotions about
the surgery. I just wanted it done and was in a state of limbo, emotionally numb, and very tired from the bowel prep. They put me under and 4 hours later I was done with the surgery. I don't remember anything from that day other than some pain in my abdomen and waking up in my hospital room.
The Cleveland Clinic has a 0 - 10 pain scale that they constantly use...10 being the worst pain ever and 0 having no pain at all. My worst pain I've ever experienced was when I broke 3 bones in my foot slipping on ice. I was in solid pain for almost a week and that was my 10 that I used as a reference. I was in bed on a morphine pump after surgery and for the following two days, and on an IV for fluids and antibiotics etc. for all the days in the hospital.
My pain right after surgery was an 8 at the incision site. Morphine is good stuff and I felt buzzed but never sick. I don't remember much when on it. I tried watching TV, however reading the ticker or words on the screen made me sick...so I avoided watching it and listened to it instead. The day after and the 2nd day after surgery my pain was about
a 6. They had me sit in a chair for a few minutes and walk short distances in order to wake up my organs. I figured out the button on the morphine pump and pressed it whenever I thought of it, whether I need it or not...it's set so you won't overdose. I also had these socks that would inflate and deflate constantly...it avoided blood clots forming in the legs. A nurse took them off the second night after surgery. My legs itched so badly from them for some reason but I was too doped up to know why (might have been made out of wool-just remember them as being hot and sweaty). I began eating soft foods like jello, and drinking juices.
Day 3 - I was off the morphine pump and on Percocet. 2 pills every 4 hours religiously. The pain was 3-4 with pills, 6-7 when they began wearing off. I began eating normal soft foods like eggs, bread, soups, and drinking more juices. The also removed the urinary catheter...that was an experience. Now, I had to walk to the bathroom,...which forced me to walk several times during the day. I also asked my mom for a summary of what happened during the surgery and past days since my mind had cleared somewhat. She said all they could do was remove the colon and make the end ileostomy and stop to operation. They also had to do the 10" long incision...
open colectomy instead of the lapriscopic route. The surgeon said my internal organs were too soft from the year of prednisone and they couldn't hold staples or stitches...and that's why he couldn't do the j-pouch out of the small intestine or the surgery lapriscopically at that time. He said it actually does more trauma on the body going lapriscopically then
opening me up at that point. I looked at the clear bag and stoma and didn't really have any feelings about
it yet...still recovering. My incision was still covered with bandages at that point but removed later in the day - and
open the rest of the time. That's when I saw the incision and all of the staples in it. It ran about
an inch above the belly button all the way down to my favorite organ. I'm glad they went lower rather than higher as I've seen what other
open surgery scars looked like.
Day 4 - the pain was down to 1-2 while on the pills, 4-5 when they wore off. I ate more soft foods without any nausea and my stoma woke up and began farting when my best friend from college was visiting me. That was funny...and I really didn't care because my mental ability was still a bit hazy. I learned to empty the pouch in the bathroom later on that day. My energy levels were extremely low. Walking to the bathroom in the next room was exhausting. Also, when I walked, I was hunched over like an old lady because you cannot stand straight up from the pain in the stomach area. This last about
3 to 4 weeks before you begin to straighten up again.
Day 5 - I went home from the hospital (normally
open surgeries are 5-10 days in the hospital, 3-5 days laproscopically). I timed my departure when the painkillers kicked in since we lived an hour away from the hospital. I was in total agony for the car ride. Every bump in the road, every pothole and every bridge joint hurt. I got home and slept almost 20 hours continuously.
Day 6 - the pain subsided so much that I could tell the pain I had originally from UC was gone (UC pain all last year was a constant 3) and I just had a 1-2 pain at the incision site. Still taking 2 pills every 4 hours and stayed in bed sleeping on my back.
Day 7 - the pain subsided some more...almost 0-1 when pain pills were working, jump up to a 4 when they began wearing off.
Day 8 - the staples were removed from the visiting home nurse. It hurt some but was over in 5 minutes...pings and tings she called it. The incision
opened up a little in spots (about
an hour later)...so use surgical tape to hold the incision together after they remove the staples. I'll remember this next time. The nurse also gave me some free ostomy samples...which was great...oh, and you'll get a ton of the ostomy supply companies calling you at this point. Ask for free samples from all of them...they want your business and your insurance money. I think I got 2 months worth out of them.
The second week after surgery, I was using pain pills just at night (sometimes 2 pills...sometimes 1 pill). I would wake up usually in the middle of the night due to pain and have to take 2 more pills. During the third week, I was down to one pill at night and none during the day. Pain from the incision was almost gone. I then discovered a new pain and much more milder one. My whole abdomen was sore, like a large bruise, but only hurt when something rubbed on it or if I had my waistband from my sweatpants over it. By this time the incision was almost completely healed and scabs were gone. All of this time I'm sleeping on my back...never on the sides yet. I began taking showers at this point...I'm sure I smelled good. Baths started at week 3, hot tub at week 4.
Week 3 to week 7, the mild pain in the abdomen is still there but diminishes much more slowly than the incision pain did during the first two weeks. I was off all pain medicines at this point. I had to taper off prednisone over 4 weeks...20 mg, 10 mg, 5 mg, then 5 mg every other day. The stoma site itches and sometimes hurts during this period...and you may experience some phantom pain..random short stabbing internal pains that go away in a few seconds and lasted a couple of weeks. The weight of the stuff in the full bag will hurt your belly when walking to the bathroom. This goes away around week 5 or 6. Energy levels are the slowest to return. Also at week 6 is usually the post op visit. At this point you can start eating regular foods, introducing them slowly. Before this, they recommend only eating items that you can cut or mash with a fork and avoid all raw fruits and vegetables and things with skins to avoid blockages at your stoma. I was off work for a total of 8 weeks. Also at this time you can start sleeping on your sides very comfortably and even on your belly, but I didn't do that before the surgery.
For my ileostomy, it took only 2 times to the bathroom to master the drainable pouch. The wafer took about
5 changes before I mastered that and had a system down to 10 minutes. Change them in the morning before eating or drinking anything or you'll have a disaster if it is spewing stuff. I made that mistake once and never again. Also using the shower to wash everything off before a wafer change works great and I let the stoma hang over the sink while doing all the prep stuff. I don't use adhesive remover, just slowly pull it off and I think the new wafer sticks better if old residue is still there. I use paste to seal around the stoma...cut the
opening slightly larger than the stoma and the paste should fill in the gap...use powder if it doesn't cover everything. The stoma will shrink until about
6 to 8 weeks post op so measure it during those times. A wafer lasts a week for me and the bags I change out every 2 days because the filters stop working and they begin to balloon up from gas. That's always fun burping them at night and when I wake up in the morning. The stench isn't as bad as everyone claims...at least for me. I think it is much milder than my original brew I had up to a few years ago.
Even now at week 9, it is still a little difficult to make it through my work day due to the lack of energy, but I'm stronger today (Friday) than I was on Monday...so the improvement is still noticeable. I've read it takes about
3-5 months before you have all of your energy back. The funny thing about
the ileostomy is that I couldn't figure out how to wear my pants over it or under it when I returned. I was in sweatpants up to the day I returned. I just let the wasteband of my pants cross over the bag (below the stoma) and it still fills up fine. I tried wearing my pants higher above the stoma and it just irritated the heck out of it. There is a slight bulge visible under my tucked in shirt, but not that bad and I don't care. I'm 31 and do not feel self conscious...I'm just glad to feel normal again. I didn't have to buy any new clothes, and I wear a belt on the next notch over (larger) than I use to before. To me, the ileostomy and bag thing wasn't a problem since my past year of UC made me immune to any gross out factor. Plus, I never had any leaks yet, and seem to have a good pouch/wafer system that seems to be working great.
I do not have any regrets about
the surgery and facing 1 to 2 more additional surgeries later this year. I feel almost normal again and know I can live fine with a permanent ileostomy if the j-pouch fails later in life (only 5-10% chance). I would do this surgery over again in a heartbeat and I wish I did the surgery 6 months sooner. It is like I've been switched back to the healthy state that I was in 2 years ago before UC. I cannot even tell my colon is missing other than seeing the scar and bag when I lift up my shirt. I do get thirsty a little more often and drink more water and juices than before. But that is better than dealing with the constant pain, taking multiple pills throughout the day, and not being able to travel and constantly being worried about
what to eat or drink. All of that is gone now...so now my life is back to as close to normal as I can get and I don't think of UC anymore!!! So even mentally I'm better off. If the j-pouch works, maybe I'll even get a little more closer to normal. Bills for this surgery and testing were around $55,000. After insurance played their game with them, they got it down to $28,000, and I wound up paying around $630 out of pocket. That's how the system works with insurance in the U.S. It's not as broken as the media will lead you to believe.
My surgeon told me that he may do the j-pouch and reverse the ileostomy at the same time for surgery #2...whether it happens that way or not, I don't know. I'll just keep my fingers crossed.
Hope this info helps anyone looking at the surgery option.
Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays
Oct. 2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Pancolitis (entire colon involved)
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all
10/12/2007 - Steroid Induced Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily Iron Pills
open Subtotal Colectomy with Temporary Ileostomy Surgery
Off all meds except Actonel and feel normal again
Aug. 2008 - J-Pouch Surgery and possible Ileo Reversal Surgery Scheduled
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Date Joined Mar 2008
Total Posts : 3115
Posted 4/12/2008 7:45 AM (GMT -6)
Wow, GISGUY, ditto. I had my proctocolectomy 2/8/08 at the Cleveland Clinic (I bet we passed in the halls on our walks!!) and was in for 9 days, but what happened in the time frames was just about
what I went through.
I have Crohn's and although I could not have a J-pouch, I have had an ileo for more than 6 years, and wish I had done it sooner.
Lew1201-I have a family member who, at your son's age, had surgery and has lived the last 40 or so years with an ileo. He has never let it stop him, has climbed BIG mountains, sailed on the ocean for months at a time and is a father. He was always
it. It is an adjustment, both mentally and physically, but it is easier to understand once you get your life back. It might be a good idea to ask your doctor if they have any volunteers at your hospital that are willing to talk to patients who have to consider surgery. They may even have younger ones that can share their experience with your son and you.
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Date Joined Aug 2006
Total Posts : 6571
Posted 4/12/2008 8:15 PM (GMT -6)
wow gisguy, that was very detailed! i could never have remembered all that!
here are a few random good things that come out of the surgery that noone thinks of. Your toilet paper bill goes down, you use less and you can buy the really cheap stuff! Also, you have a built in weapon, someone starts messing with you, reach down rip that bag off and sling it at them, i bet they will leave!
here is something to remember also, for the first few months after srugery, especially if you have your butt sewn up, when you go over railroad tracks or speed bumps or pot holes in the car, raise your butt up off the seat first!
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