Has anyone experienced Crohn's symptoms after having an ileostomy? How was it diagnosed and how did they treat it?
rosebud621
Aug 01, 2012 2:25 am
WOUNDED DOE
Aug 03, 2012 4:59 am
Hi.... Yeah, unfortunately I am one of many who still suffers from Crohn's even after the ileostomy. I was given my ostomy at age ten, and I am soon to be age 46. I have had 6 surgeries due to my Crohn's and each time they reverse my ostomy to the opposite side. Treatment for Crohn's is not simple. There are, however, many more promising trials with meds these days than ever before, and many of us with Crohn's have different symptoms and different treatments we try, though there is no cure for that Crohn's monster. Some people can eat only certain foods, others of us can eat anything. Some are treated with over-the-counter meds and some try IV treatments like Remicade or injections like Humira. It seems different things work for different people to help put into remission or alleviate symptoms a bit. That is the difficult thing about a disease like Crohn's, there is no cure, only trial and error in finding what works best for the individual. Crohn's can return after getting an ileo, BUT having an ostomy (trust this old lady) does make life easier in SO many ways. I had a reversal surgery when I was 13 and that did not work out and I will never try again. My life is much better with the ostomy.
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Immarsh
Hi All, If you have an " old" or recent ostomy, this is the place for you. I think I've been a member for more than 15 years, but I have had my surgery, since I was a kid of 15 ( do the math-that's more than 60 years ago). As a teen, with a new ostomy ( for Ulcerative colitis) my parents dragged me off to my first ostomy association meeting. I wasn't happy, but in the long run, it's the best thing that happened to me. I met others, older, and teens like me, adjusting to the changes. A group of us started a Young adult group, and helped each other, and even visited kids who were new to the world of ostomies. But soon I married, and moved out of state, and although made some connections with other NJ ostomates, I became pretty much isolated. Until I discovered MaO. By then, I was having a myriad of other medical issues, and my aging stoma " wasn't doing well". I received a lot of help and support from members! I was pleased that I was also back to supporting others. I met a gal on line (from Papua New Guinea) who was trying to help ostomates in her country. There is a scarcity of supplies in some other countries, and unlike the US, insurance to pay for supplies isn't available. When my son followed his "love" twenty years ago, and moved to Australia I took advantage of an opportunity to help other ostomates. On one of my first visits to Oz, I brought a suitcase full of Ostomy supplies, handed them off to an Ostomy assoc. On the Gold Coast, who then had a friend take them to PNG. They were grateful for the help, and Janet and I still write.. This is the place to be, if you need help, and it also gives you the opportunity to provide help and support to others. Feel free to write, if you'd like to chat, about things ostomy, or life in general. Best REgards to all.. Marsha
frizbeekid
Aug 03, 2012 6:38 am
You were very young when this all began, and as you put it yourself, an old lady now. I did not know someone could still have Crohn's after an ileostomy. Do you still take meds for Crohn's? If you don't mind me asking.
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mooza
Aug 03, 2012 11:19 pm
Well said WD - ..I have tried all the IVS Humira injections. Found Remicade helped me, but 3 infusions seemed to get a bit tougher. The first Remicade lasted a lovely 3 months, the next 2 were 6 weeks. But I have also had reversals. But I'm pretty sure I don't have Crohn's anymore. Hoping, but I think I'm pretty good since this Ileo. I was 23, so youngish but not as young as WD. Wow, anybody as a child, my heart goes out to you MOOZA.
WOUNDED DOE
Aug 04, 2012 7:23 am
Hi frizbeekid....lol yup, I'm an 'old Crohnie' hehe....Crohn's is something that only goes into remission and sort of lurks in the shadows. However, I did make it 18 years in remission before my last surgery, which was last November. Oh, and you can ask me whatever you like, no problem. .....The meds I've been on over the years have been many...everything from Prednisone to Remicade and Flagyl, and some things that this very tired old mind isn't recalling at the moment. But each treatment, for me, did not work as it made things worse with bad side effects :/ BUT some people do very well, especially those with milder cases of Crohn's....In fact, I knew a gent who lived in my same town who had Crohn's at a very early age and lived to be 87 and swore by the fact that keeping stress out of his life, eating lots of garlic, fish, and tons of fresh fruit kept him in better health. He required mild sedatives for sleep and anxiety and rarely drank anything except his own fresh well water and swore by that as well lol....Who knows....I currently am on no meds at all because they haven't found anything I don't have bad reactions to. One thing I have learned over the many years and especially now knowing so many others with Crohn's is that most of us agree that upheavals in stress in our lives do bring on attacks of our Crohn's and symptoms become much worse. Fish oil capsules seem to help me.
Stories of Living Life to the Fullest from Ostomy Advocates I Hollister
WOUNDED DOE
Aug 04, 2012 7:26 am
Hiya Mooza! Awww, you are so sweet..... Yeah, living with Crohn's is not fun and certainly not easy, but I try not to let most of my experiences in life be negative from the Crohn's..... So instead, I try to get more fun into my life despite my Crohn's........ I try to stay ahead of that monster and not let it rule my life........