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Having a consult for a ileostomy

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Posted 9/22/2009 2:37 AM (GMT 0)
Hi everyone!

  I have ulcerative colitis and have had it since 2005. It has gotten to the point where even steroids have a hard time keeping me in remission. My Doctor has put in a prescription for Humira and I'm still waiting for my insurance company to let me know if it's approved or denied, but my GI has also scheduled me a consult with a colorectal surgeon to discuss removing my colon and having an ileostomy.  I was wondering what it's like, how difficult the surgery is and all the usual questions for someone who is kinda whimpy like me...  I'm not concerned about living life with a bag, I'm more concerned about the actual surgery... how hard is it to recover, are there any risks in the future by having a bag like blockages and stuff like that??

    I am having such a hard time on these steroids... and I'm praying that the Humira get's me into remisson and I don't have to really consider surgery at this point, but I'm afraid that I will someday and am just curious what life is like...  And who knows.. I might just decide to have it instead of throwing a bunch of chemicals into my body for years and years...

  One thing I should mention.... I am a very active person, an AVID horseback rider.. (competetion type riding) and I think that's my main concern.. will I still be able to ride my horse and compete in high energy type competetions?  (cutting, reining, working cowhorse type riding)...  I don't know if I could give that up....

  Thanks everyone for reading my post and I appreciate any input..  I'm just praying that it's mostly positive!!!  I'm such a big baby lately... probably the pred working on my emotions... lol....

 

Posted 9/22/2009 3:31 AM (GMT 0)
The idea of surgery is scary, but if i had known how much better life is, i would have done it the mminute i saw blood!
Yes its hard, and yes its painful. Im not gonna lie to you and tell you its not.
BUT that only lasts for a few weeks, while UC pain lasts FOREVER.
Plus those chemicals are hard on your body and can do lots of damage over the long run.

When you wake up from surgery, you will be amazed that you feel better, i felt clean. BUT i also hurt, lol. But they have drugs for that,lol. I was in the hosptial for 6 days, had my morphine for about 3 days. then after that pain pills.
Then when i got home, i used the pills for about 3 days.
It took me about 5 or 6 weeks to get back to feeling like did before surgery and then about 4 months to get all my energy back. But then it was great!
There are risks of blockages, but that is low. And you can help lessen those risks by chewing your food reallly will and drinking lots also.
As for horse riding, i dont see why you cant, probably would have to wait a few months though. i dont much think you should get up there the day after, lol.
I dont think your bag woudl be a problem, just empty it before hand, and maybe wear a band to keep it from bouncing, if it would bother you

There really isnt anything you CANT do with a bag!!! I have yet to find something it has kept me from doing!
Posted 9/22/2009 7:28 PM (GMT 0)
susiebuddy--sorry to hear you are having such a terrible flair...unfortunatley, Prednisone manages your disease, it cannot put it into remission, so while you are taking it, the disease continues...

Has your doctor mentioned a j-pouch? Patients with UC usually have good luck with them...they are an internal pouch...instead of an external ileostomy. I would suggest finding a ColoRectal Specialist (teaching hospitals are great)...don't skimp on finding the best...it will make a HUGE difference in your surgery/recovery. It isn't a walk in the park, but it beats being sick. I'd do it all over again if I had too!!!!

Personally, I am a Crohn's patient, and have had a proctocolectomy with end ileostomy. I have a wonderful quality of life, med free, and I ride in the Hunters. I had to put off riding for a little while, about 6 months, but everyone is different! Either of the options shouldn't keep you from doing anything...in addition to riding I workout, swim, bikeride, travel, kayak and many other activities. I haven't found any limitations :-)
Posted 9/22/2009 7:37 PM (GMT 0)
I'm sure after living with UC for 4 years you aren't the average wimp!

I had the same problem and took the first dose of Humira and it was NOT FUN! I screamed out when my doctor friend injected the four doses... I went into the hospital that weekend and had my colon removed by chance. I was in such a bad flare that it was our last option and I haven't regretted it yet!

I haven't had my reversal yet and have been feeling sick for a few days now- could be a blockage but not nearly as bad as UC pain.

Because I was in such bad shape, it took a while to recover but that was recovering from the bad flare also. If you get the surgery done before you get really bad, You'll recover faster, especially if you are active. I'm somewhat young and not really active and have had no major problems. I love swimming and once I got past my bag slung over my suit bottoms, I was fine with the pool and beach trips. You may need to change your appliance more often because of sweat but I hear people maintain their activity level afterward.

Good Luck and feel free to email me if you have anymore questions I can help with. You can also check out my blog to see the stuff I deal with day-to-day.

:)
Posted 9/23/2009 3:02 AM (GMT 0)
Hello;

My husband also rides reiners, and he wants to be able to do that again. He has a lovely 4 year old filly by Custom Crome that he is so eager to be on. He has an ileostomy, though his situation is a bit different from yours, he had to have emergency surgery last Nov and the complications are still with him. He is having surgery next month to address the final two problems. One of with is an insisional hernia. After that though he want to ride and ride competively. I do not see why you could not do this, there is an ostomy belt that is available, that we think will make riding easier, he bought it but there is still too much scar tissue to use it. Clothing is a bit of a problem, the stoma is right at belt line and tight jeans arent so good but with some alternations we should be able to get that sorted out. His UC came on all of a sudden and was wicked, he had no choice, the bag takes some getting used to but it does give you control which is not possible with UC. He said the rest will be easy once he gets this abscess and scar tissue hernis fixed.

take care and please share horse stuff expecially reining and cowhorse, where are you located and what do you ride?
Posted 9/23/2009 11:43 AM (GMT 0)
Nice to hear the encouragement huh? I am still in the recovery stage and not loving it. I did go on a bike ride this week and my bum didn't hurt at the end.(Of ride that is). Abs are still in tender stage but I too am looking forward to some good riding when feeling up to it. The up and down would be a problem right now. I am 7 weeks post op and trying to be patient. I don't compete just ride for fun.
Posted 9/23/2009 3:32 PM (GMT 0)
Thank you evereyone!

My latest horse horse is a finished cutting horse.. although I havent' competed on him yet in an actual cutting event, I have done some team penning on him and let me tell you.. that cutting training definately helps you get good times!! He's a 12 year old APHA, although he is mostly sorrel, doesn't look anything like a paint horse..lol... just has enough white to qualify wtih APHA.. I have a freind who is getting some cattle at the end of this month, so I'll be able to get in some practice sessions and maybe compete in some local events. For now, I mostly trail ride him, he seems to love it compared to being an arena horse for so many years...

I'm still having trouble keeping my flare at bay... even at 40mg of prednisone I still have some breakthrough bleeding... so I'm praying I hear from my insurance company soon as far as getting on Humira.. I've gained so much weight and have this HORRID hunchback from the pred.. it's so annoying.... and the moonface and neck.. sometimes it feels like it's strangling me... I'm not used to having all this weight around my neck and face...

Anyhow... off to the barn I go for my morning chores.. Have a good day everyone!
Posted 9/23/2009 9:12 PM (GMT 0)
Susie,

I was on pred for 2 straight years and it never helped eliminate the bleeding. If your other symptoms are in check it might be working but isn't 100% effective nor, as you know, should it be used as a maintenance drug.

Sue
Posted 9/24/2009 12:44 AM (GMT 0)
Hey Suebear,

Actually, since you mentioned it... my other symptoms do seem to be in check, I haven't had too much cramping or anything really.... just mostly the bleeding.. but that seems to freak me out the most for some reason. It's actually better today, I am going to start my taper again tomorrow down to 35mg and so on.. Hopefully I'll hear from the medical "whoever" this week about the Humira if I get approved or not... My GI is pretty confident that it will get approved... So now it's just a wait and see type of thing...

Another thing. I am a hay broker for a living and wonder if lifting all these hevy bales is a good thing or not.. I am thinking of taking some time off to get my head together and try to heal my body...

   EDIT:::  OH.. forgot to add.. I'm starting Wellbutrin tomorow.. 150mg to help me with my "depression"..... Just till I can get on Humira hopefully and get OFF this evil Prednisone... it's making me depressed and maybe the wellbutrin will help till I can get this all sorted out...

Posted 9/24/2009 2:43 AM (GMT 0)
welli dont know how much a hay bale weighs, for the first 6 weeks you arent supposed to lift more than 10lbs, then after thatyou just work up
i was going to the gym and doing 60 lb arm lifts
and then of course i lift my son heis 35lbs and my friends kids, they are 60lbs with no problems.
Posted 9/24/2009 1:19 PM (GMT 0)
Susie,

Lifting hay shouldn't be causing you problems. The bleeding is the disease and I sure understand about being freaked out about it. Honestly, I bled for 2 years straight before becoming anemic and having lost all my B-12. I don't recommend it but if you're still able to work it sounds as if the pred is working. Good luck with the Humira and the addition of wellbutrin. I didn't address my depression until after surgery, big mistake. However, I was up to 22 UC pills per day and couldn't stomach one more medication.

Sue
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