Hi My name is Tony , I'm from southern Ireland , a small town called Cobh(Cove) , I am 56 and have UC since I was 22 , it got serious when I was 26 and I had to be hospitalized , medication , including sulfa drugs and steroids helps me over the next 25 or so years ,

last year I had a really bad flare which really finished off my colon , so I had a  colectomy last October  , since then I have gotten used to having my ostomy and with great support , mostly from online communitys like crohnsforum and Erics VeganOstomy I have survived the first few months and apart from a flare in my remaining stump caused by steroid taper I am doing great , #

I only wish I  had the surgery 30 years ago as my quality of life had changed so much for the better .

Going to see my surgeon tomorrow for the first time since my surgery , hopefully everything will go smoothly .

First of all.... "GREAT JOB ERIC!!"  Love your site that has saved me many growing pains of being a Colostomate! You have saved my lifestyle and quality of life!!

I'm Mark of Austin, Tx..  I am new Colostomate as of July 2016, having been a paraplegic since 1990, and have had a rough few years of various issues, chronic pain being the front most issue that wears me down.. becoming a Colostomate was a scary thing to face and caused be a neurogenic bowel, due to my level of paralysis and 15+ years in pain management that gave me chronic costipation, causing a prolapsed colon, and after years of enduring the discomfort and outright pain and suffering, I became a Colostomate. It hasn't solved all my issues, but it sure has given me a quality of life I did not expect I would ever experience again. With little help from my WOCN folks, and allot of help from Eric's website, I have found that this is not near as bad as I was expecting life to be...  thanks again Eric!

I am now recovering from a right shoulder rotator cuff repair, in rehab at the moment, and just going day to day hoping for my shoulder to heal so I can get back to life.. this has been a miserable time, not only because I am a paraplegic, but this has been a very painful surgery and a tough recover.  Surgery was March 21st and I have a long road ahead.

looking forward to being a member of this blog site, giving my opinions, help where I can be helpful, and ask for help and support when I need it as well.

Thanks for your time folks....  till next time!

Posted by: Gimparoo

I am now recovering from a right shoulder rotator cuff repair, in rehab at the moment, and just going day to day hoping for my shoulder to heal so I can get back to life.. 

Ouch! I wish you a speedy recovery! And I'm glad to see you here! 

Wow.  Reading what others have written, makes my story rather tame in comparison.  Wish the best for them.

Myself?  I am probably going to be the old fart of the group (67 yrs).  I have Crohns and since 1999 I have had an ostomy bag as a constant part of me.  I too, am a cancer survivor (twice) and have probably given up more organs while I am yet alive, than do most organ donors after they pass on.  I appreciate what you have done Eric, and am continuously learning about all this ostomy life (never too old to learn).

Railfan, thank you for sharing!

No matter what the reason, we're all in the same boat when it comes to having an ostomy. I'm sure you also have a lot to teach the rest of us =)

Well. as for knowing much, I don't know how much I can help.  But I do have a fantastic ostomy nurse who helps me, when even after all these years of having an ostomy, with new things to learn and new problems to solve.

Posted by: Railfan

 

But I do have a fantastic ostomy nurse who helps me, when even after all these years of having an ostomy, with new things to learn and new problems to solve. 

Well, if you have any tips to share, we do have a special forum for them 😊 Stoma Nurses are so amazing. 

Eric, thanks so much for this website, being active on Reddit, and just sharing in general. I'm a new ileostomate (Steve the stoma became my buddy on Valentine's Day!) and the wealth of information on here has been a complete life saver. 

My stoma is not intended to be a permanent buddy-- I was diagnosed with locally advanced colon cancer (it has decided to latch on to my bladder and uterus, but not metastasize HELL YEAH) in December, and my oncologists opted for diversion to decrease the likelihood of infections during my neoadjuvant chemoradiotherapy. If all goes well, I will be having a pelvic exenteration in June (hopefully only partial) and then a reversal for Steve after another round of chemo. 

I've been spending a lot of time adjusting and figuring things out, between treatments at Princess Margaret, and this website is my go to for general information. If Steve ends up being a buddy for life I know that I'll have a great place to turn for support and information and commiseration. Like cancer, I've found that talking about being an ostomate with someone who is in the same boat is just that much more fun, because there is an immediate and innate understanding, and also generally an ability to make more jokes about bags of poo being our constant companions. 

Thank you again, so much, for all of the time you put into making information accessible and relatable! It's greatly appreciated!

Megatron, thank you so much for sharing your stories and being a part of this site. 

I hope that your treatment goes well and that you get back on track in the near future. 

Please feel free to share more about any challenges you've had with your cancer diagnosis or treatment in the Cancer Forum. I'm sure others will be able to relate to your experience in some way. 

Finally going to push through brain fog and introduce myself - hopefully this is coherent!

I'm Zee. I've had IBD since my early 20s in the early 1990s, with a diagnosis of ulcerative proctitis, corrected to ulcerative colitis/pancolitis in about 1992 I guess? At that point I'd been bleeding from my rectum for years but it took me quite a while to actually tell anyone. I went through pretty much all the drugs that were available back then, including prednisone, salofalk, 5-ASA, methotrexate, flagyl, cipro (there were no biologics back then) but ultimately failed everything except prednisone (which weirdly gave me swelling/arthropathy in my knees so bad that I couldn't lie down for more than a few hours a day). Ultimately in 1996 I opted to get a J-pouch with temporary loop ileostomy. I ended up with adhesions and a bowel twist/blockage which I had to suffer through for several months before they opened me up and fixed it. A very traumatic experience overall, not just because of the pain but because doctors thought my chronic vomiting was anorexia/bulemia rather than involuntary vomiting. Ugh.

The good news is that after that, my J-pouch was basically perfect for about 12 years, and the ileostomy was reversed after only about 6-7 months. I have to say, having a J-pouch back then, in the early days of the surgery in Canada was tough, because there really wasn't a lot of information out there, so I had to muddle through a bit on my own - no one told me to take vitamin supplements, and no one told me to have a C-section when I was pregnant (which I guess is the standard now).

In the meantime, since of course I still technically had IBD I continued to develop other extra-intestinal issues, like developing ankylosing spondylitis one year after my surgery.

In 2008, I developed fistulas - the worse being a rectovaginal fistula, with repeated infections and pouchitis. So my diagnosis was changed to Crohn's. In the past 8 years I've tried various of the new drugs available, none of which worked for me (I've tried 3 biologics) - Imuran gave me pancreatitis, and repeated courses of Flagyl and Cipro are probably why I now have neuropathy and have had tendon issues.

No one wanted to remove my fistulas because the prognosis with Crohn's isn't good, and I didn't feel like setons sounded awesome either, so in January of this year I opted for ileostomy surgery. The doctors suggested I do it in two stages, so right now it's a loop ileostomy, but my plan is to get my proctectomy and removal of the J-pouch next year.

Oh - and while I was waiting for my surgery date I developed metastatic vaginal Crohn's - so THAT's a thing I now know exists (did you know there is a case on the books of a dude with Crohn's in his EAR? Ack.). Luckily one round of Flagyl seemed to clear that up because I caught it early, but it's a bit scary feeling like your body is a time bomb. Hopefully with non-active fistulas this won't happen again.

Sorry if this is a bit long - I skipped a bunch of autoimmune diagnoses in the middle in the interest of brevity though!

Rebelle, thank you so much for sharing your story! 

Sounds like you and meds don't seem to get along very well :o 

I really appreciate your openness and I hope that your ostomy finally brings you long-term relief. 

I know several ladies who have rectovaginal fistulas and they also describe it as a nightmare. 

Have fun on the forums :) 

I have a loop colostomy, active crohn's perianal fistulas is the reason to divert stool from the bad fistuals I have around my anal area that have seton's placed to allow them to drain.  I still have crohn's symptoms, e.g. diarrhea, flushed, weak, hard to maintain weight, etc.  Just wondering since most of my disease is in two major areas, the anus/rectum, and the small intestine, Eric, do you still have any symptoms of the disease, or was your disease confined to the colon/rectum?  Thanks

Reggie

Hey Reggie. Welcome to the forums!

My disease was confined to my colon and rectum, but I had quite a few "extraintestinal manifestations" that were quite problematic: mouth sores, joint pains, skin lesions, etc. 

I don't have any Crohn's symptoms, but my perianal area still hasn't healed 100% and is still a bit of a bother - I'll have to get a follow up with my surgeon to see what options come next. 

Fistulas are terrible and I do hope that you find some relief soon!

Thanks Eric, here's wishing you some help that will continue to heal the rectal area.  I had sepsis caused by server infection from the fistulas and almost died, emergency doctor saved my life.  I was 2 hours away from not being here anymore back in the summer of 2014, blood pressure 60/40, temp 104!  They treated the sepsis, and were thinking of removing my colon, working on the fistulas, and giving me a ostomy.  But the surgeon believed I would not have survived a rectum removal so just did the loop colostomy on July 8, 2014.   I still have had a couple episodes of crohn's flares that caused a blockage but I knew what to do, get to ER and basically prove I had knowledge of what to do, solumedrol (IV prednisone), pain killers, and off I went after a few hours.  But the fistulas still remain, not quite as bad as before, but a constant threat of infectious sepsis again, so I monitor BP/temp regularly.  I may be headed down the road for a end ileostomy and rectum removal in the future.  Thanks for your website,  I have learned much from your experience and reviews!

Hi Reggie,

Sepsis is so bad. I know several people who've had it and it's always an emergency - I'm glad you had good care at the time!

For me, removing the rectum was the solution for my fistulas. Even when I had my ostomy for a few months before my rectum removal, my fistulas were "active" and I don't believe it would have resolved itself on its own.