No, I don't regret it. No more drugs. I don't know what surgery you are choosing but if it's a j-pouch go to www.j-pouch.org
Just wanted to add my two cents here. I have had an ileostomy now for 26 years. I have NEVER regretted having the surgery. After being as sick as I was and knowing where every bathroom was from here to timbucktoo, surgery was a BLESSING! I have never felt so freed, so happy to have the chance to get on with my life. I was also on that dreaded prednisome, nasty stuff. Also the side effects were so bad....I really had no choice but to have the surgery as my colon perforated on the operating table after an exploratory to see exactly what was happening in there. Doctors suspected UC but they needed to know just how bad it was so off I went. I ended up with a colostomy at first, spent about a month in hospital building my body back up, then had my permanent ileostomy performed. In total I was in for 3 months, but please don't think this will happen to you. I had many complications that led to my long stay. It takes awhile to get back on your feet again but always remember this...keep moving. As much as it will kill you to get out of that bed, get up and walk. I thought to myself when the surgeon came in the day after my 10 hr surgery and nearly pulled me out of bed...."MY GOD, what is this guy thinking" I can't move and sure enough I was up, albeit a bit bent over from the sutures. Everyday, I got out of that bed and walked a few steps. A few steps led to a few strides and got to the point where I was wearing the rug out in the hallway of the hospital! Moving is so essential to getting yourself better. You won't regret having surgery believe me, at first you probably will think, "oh why did I choose this" but in the end it is SO WORTH WHILE! It now takes me less than 10 minutes to change my appliance and that is usually only once a week. Don't get me wrong, I do have occasional accidents when I have to change more but basically that is all I do. I have been given a new life so to speak. My ostomy is now a part of me now and I thank God it is there and it saved my life.
As far as the Remicade is concerned. My son also has UC. He has been the gambit of drugs and his last resort was Remicade. He had a very difficult time with it. He says it seemed to make it worse so he went off it. He is back on the only thing that does help and that is the dreaded Prednisome. He only takes it every other day and its a small dose. He finds that he doesn't get the side effects if he takes it every other day.
So with that, I hope I helped you some. If you would like to chat more, you can reach me at firstname.lastname@example.org and I would be more than happy to help you out.
WOW! What a shocker....I am so sorry your husband has decided to end your marriage.May I ask how long you have been married? It never ceases to amaze me how many husbands or wives for that matter just up and walk out the door. Mine was having an affair with my next door neighbor while I lay dying in the hospital...nice guy. But all aside its rough, not only do you have to deal with the emotions of your surgeries and sickness but now you also have to deal with the fact that he's leaving. Well I will be blunt here and say GOOODDD RIDDENS! If someone can't love you through sickness and health then something is wrong with THEM not you. Don't get yourself into a state where you are thinking that no one will want you because it isn't true. I call a person like that a coward, one who can face the reality that you love a person for who they are, not for what surgery or medical issues they are going through. If you love someone so much, you would be there for them through anything...period. Sorry for the rant, but it just irks me to death when this happens. I survived, it wasnt easy as I had a two yr old to raise at the time. Put your chin up there g/f, you will be fine and it will be his lose.
Well I have had an ileostomy for 28 yrs now with no problem. It was a blessing to have the surgery, believe me. I have had a couple of blockages thru the years, but they were my own fault(ate an apple WITH the peel) which caused a blockage. As far as the joint pain, well I have just recently been diagnosed with Osteoarthritis in my shoulder and arm. It hurts like heck most of the time but it all goes along with having the UC. Its autoimmune they tell me. I was on Celebrex for about a month and it didn't ease the pain. I am now on Ultram for the pain, and will have to see how it goes. I am a bit older than you though so I think having this diagnosis at my age of 53 is something I will just have to deal with. Its another hurtle to jump over, but I have come this far and have a good outlook on life now. Having the surgery like I said is so worth it. Not having to find every single bathroom from here to eternity is such a blessing. You feel so much better afterwards. Good luck.
Hi again Nursy,
Well I am so sorry to hear that HE has used your ileostomy as an excuse to end your marriage. Like my ex did, he told me and I quote, "you are not the same girl I married" HA! I haven't changed one bit other than having surgery so why does that make me different? I will never understand that one! If he's been fooling around for all this time then he deserves what he gets....and I hope someday he realizes what he lost. Mine did, he told my son recently that he wished he never left me! Too late now, he married that woman he was having the affair with and is still married to her, they also have a daughter together. I think now that he is getting older he is realizing what he lost, not only me, but his only son. He never had a relationship with my son really, just when he had "time" to see him and that is very very sad. Like I said before, its HIS LOSE! Good luck, I am so glad that you have found this site. I have just recently found it myself and there are alot of good people here to help you with whatever you are dealing with.
Thank you everyone for your input. It's always helpful. I had my colonoscopy last week and the doctor didn't think things looked all that bad. Last 20 cms were roughed up, but other than the scar-tissue everywhere else and the pseudo-polyps, he didn't seem alarmed. Instructions: keep weaning off the prednisone, keep using the canasa and we'll see what the biopsy results are. He didn't expect anything out of the norm though. I'm finally getting some relief so I guess we'll keep on the current treatment methods and hope I don't flare again soon. If I do, then we'll begin having more talks about the options; medicines and surgery.
Regarding the joint pains from prednisone, I get knee aching while on this medicine, and I can say, that after I get off it, the aching does go away. I find that drinking lots of water, watching the salts and taking potassium/calcium helps for me. I also get horrible cramping in my feet and legs, but I do take a leg cramping/quinine tablet and that does seem to help. My eyes feel puffy all the time, but I think that's just part of the "mooning" thing, heart racing and emotions running wild, but I'm lucky, once off the prenisone, all these things go away!
Thank you everyone, and good luck to all!