Living with an Ileostomy and Crohn's: Introducing Myself

Hello everyone,
I am a new member (about 3 weeks), and have had an ileostomy since 2001. I also have Crohn's disease. I was diagnosed with Crohn's in 1976 and had my first surgery in 1980. Believe it or not, the ileostomy was required due to scar tissue from the first surgery which caused a hernia. However, my doctor thought the hernia was a flare up of my Crohn's disease. By the time we found out differently, the hernia became strangulated and burst and caused sepsis before they opened me up. The doctor tried to take out the bad and sew together but that didn't work either, so back to surgery 2 days later. At the time, it was quite a surprise to find out that I was left with an ileostomy. The surgeon had hopes of reconnecting me so left me an extra stoma. As it turns out, they removed about 145cm and 2/3 of my large. My gastroenterologist says reconnecting would not be advisable, so I have 2 stomas (they do not want to send me into surgery to get rid of the other, I guess I don't do too well with surgeries). Anyways, I could continue but I think you get the idea. I have been reading about others that are here and am glad to have found a place where there are people who understand what it is like. My wife and family have been great throughout everything, especially my wife who has been through so much (I was in a 2-month coma after the last surgery), but as understanding and supportive as they have been, they do not understand what it is like living with it. Even after 8 years, I still am cautious about being away from home, I still have blowouts (especially at the most inopportune times), and even though the flanges are supposed to hold if wet, mine do not (something to do with my skin and the oils I produce, so I have been told). On a more personal note, I have been married for 23 years and have 2 daughters, our oldest just graduated from college and our youngest is in 5th grade. After my surgery in 2001, I graduated with my second master's degree in 2003 and am teaching Biology at a local University. That is all for now, I have a class to teach, but I would like to say that it is great that I have found a place where there are other people my age with the same hurdles to overcome, and I appreciate finding a place where I can talk to them. Thanks for putting up with my rambling.
Jeff

Welcome aboard, I'm new as well. Great place to express what we go through.

Hi Jeff, I'm recently new to this. I have an ileostomy and I have also found this website useful. If you're having trouble with blowouts, try and get your stoma nurse to prescribe you gel pouches, which are about the size of a sugar tab, and turn the output to gel. I have found these useful as I work in care and find that you can't leave to use the toilet whenever you like, which I suppose is the same for you being a teacher.

Hi Jeff:

I've had my stoma for nearly 2 years. I didn't know what a blow-out was until the evening we were celebrating my mother-in-law's 91st birthday. Thank God---it was outside and it was evening. I had to literally run back to the house, not once but twice, to do a complete repair and clean up the horrific messes. I now use a bag liner and keep spares with me at all times, even at home working around the house or at the computer.

I was getting chemo at the time and that particular chemo is noteworthy for the diarrhea effect it produces. Just pretty awful. Then my oncologist prescribed liquid morphine to take every day morning and evening and it helped a lot.

I had surgery this week on my 2nd metastases to my lung (the original is colorectal cancer) and this doc gave me soooo much pain medication I am now taking pills to help "Jake" (my colostomy) get busy and get going.

This stuff is pretty unbelievable, isn't it?

I've gotten used to the fact that "Jake" has no manners, is totally uncouth and does not care a fig about who is around when he chooses to make weird noises. I generally just smile if anyone notices and say sweetly "that's Jake for you". That comment makes the noticer believe I'm completely wacky which is probably true living with this colostomy.

Baglady/

Hi all newcomers, welcome. I'm the Aussie with the Osty... So nice to see so many finding this site at long last. I'm an ileostomate of almost 5 years due to Crohn's Disease. Had Crohn's all my life but they only found it when it was almost too late... But as the saying goes, "You can't put a good woman down". I was ever so grateful when I first came across this site. I hadn't even met another ostomate, let alone talk to one. The beginning was the hardest thing I think I have ever had to do... So it became a bit of a lifeline for me. Made some great friends, put in some really cool jokes to let people see that it isn't all doom and gloom when you get one, that it's okay to laugh... even if it is at ourselves occasionally... Always a good day if I can make someone laugh or even get a grin... And the best part would be to be able to share with someone that has or is going through the exact same things... That was the clincher for me... Any subject could be spoken about to do with an ostomy... You don't feel silly asking a question... like when you go to a doctor... Mine had to check his answer in a medical book... Anyway, hope you get what I have and many others have from this site. A connection. A sense of belonging... If that's not too mushy... Take care everyone and stay happy and healthy... Tara

Welcome, Jeff. I know you'll find this to be a good source of tips, advice, and general support. The forums have certainly helped me get through some tough spots. I wish you all the best.

I love this site!!!!! Just finished changing after the second overnight blowout in a few days. How do you clean the mattress? I'm convinced that a pair of pj's are cursed. My stoma is Oscar. Just the other day my 21 yr old daughter said, "Boy Mom, your stomach sure does make strange sounds." I said, "Yep, and have absolutely no control over it. But it happened yesterday at a funeral-ugh! Oh well, to know me is to love me!

Hello Jeff,

Welcome also, but;
Sit back, hold on tight, and buckle up!
This could be a most educational experience!
But all in all you will meet a bunch of nice people.

Hello Jeff, I hope you get what you want from here as it is a very good place to find out information, relax, joke, and meet interesting people with similar issues.

Welcome Jeff. There's a great bunch of folks on this site ready to give you benefit from their experiences. I hope you get as much out of the site as I do. Have a great day. Bob

Hiya from a fellow Michigander and Ostomate..=) And a very warm welcome to all the other new people on the site!!! There are so many amazing and wonderful people here to chat with.. Good luck and welcome!!! Glad you're here..=)

~hugs~
J.J

Martha, I love the picture, "We Hold The Light In Our Hands".

Welcome Jeff, I guess you really been through the ropes, sorry to hear that but you seem like you're handling yourself well. It going to be nice having a biology teacher on board, we'll try not to overwork you, Ed

Jeff Hucko?? Would like to know more about the name.

Welcome, ... warning ... some of us love to get into discussions about physiology, psychology, and all the ologies - dreams and more. Of course, biology will probably be an ongoing talk area with many questions. I already have lots - one current interest is about neurons, synapses, neurotransmitters in the gut. But I will hold for a time to let you get settled.

I taught psychology at a Navajo college for 14 years. Tsaile, Arizona - "Love that Place".
Carol / Dawneagle

Jacksprat, we must have been in different threads lately.    I thought I might have to track you down.    Miss you, everything okay in your life?          Carol (dawneagle)

Carol,

I have had a lot on my mind lately and to top it all off, I had cataract surgery on my right eye this morning. Can't stand these dark glasses. But you know what? I just realized I never heard a blind person complaining about cataracts! I am lucky!

Jack

Good thought, Jack. One more thing to be grateful for.