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Ulcerative Colitis
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Posted 4/14/2015 12:37 PM (GMT 0)
Hi people! Today is my 1 year anniversary of my surgery- amazing! It's been a really good year- the ostomy is fine, no problems ever- seriously, I've had 2 very minor leaks. A little skin irritation here & there, easily remedied with lotion. Healing was long- took a good 4-6 months before I'd say I was totally healed. The butt wound took forever, but it just kept doing it's thing, slowly. No infection, no complication. For so many, many years I did everything to avoid surgery. Like everyone else, now I think "huh?"... I can't say I wish I did it sooner, but I can say that I am 100% happier & healthier post-op. It's such a relief to be on zero meds- some nights I find myself thinking "Gotta take my meds!" out of old habit- then it's like "ha!!! not anymore!". No worries about the biologics, insurance, copays... I've gained about 15 lbs. since then, & eat anything & everything. Tons of salads, veggies, things that would have caused me major problems with UC. Since surgery, I've gone boating, hiking, biking, early AM outings, even dining out... things that I literally could not do before surgery. My sex life in 100% better- no abdominal pain, no worries about accidents. So anyway- hope all of you are doing ok- I have no advice, really... only that it's not as scary or major as you think, the whole surgery route. I feel great, I look great, I've had zero complications. Sort of loving life these days! tongue
Posted 4/14/2015 12:39 PM (GMT 0)
Congrats it's so good to hear you are happy!
Posted 4/14/2015 12:43 PM (GMT 0)
Congrats!!! It is awesome to hear such good news!!
Posted 4/14/2015 12:45 PM (GMT 0)
Thanks for sharing your story. Continued good life to you.
Posted 4/14/2015 2:12 PM (GMT 0)
I'm so happy for you Eva!!!! So glad you updated here with such fantastic news and I wish you nothing but the best with your health and life. (((HUGS)))
Posted 4/14/2015 2:18 PM (GMT 0)
I'm surprised you can eat so much fibre with an ileostomy. To be honest, if I was doing as well as you, I probably wouldn't consider reversal surgery. Personally I know that my digestive system will never return to how it was pre-Crohn's. I have problems with abdominal pain (not severe), occasional partial obstructions, cramps, and so on. Even in the first 5 years of Crohn's disease, I had a better digestive system than this.

I don't regret surgery, in the sense that it was pretty much necessary. But I don't consider it to have restored me to full health. And I hate everything to do with ostomy supplies: ordering them, storing them, using them. I don't think reversal surgery will make me any healthier, but at least I'll be free of having to have ostomy supplies, and to me that will be a weight off my mind.

It's different for each and every person, I guess. For me, I can sum surgery up by saying: it could have been worse; it could have been better.
Posted 4/14/2015 7:01 PM (GMT 0)
(sorry if this is a double post... I guess I tried to post two messages too close together and there is an anti-spam filter that prevents that?? That was new to me).

Anyway, I was just saying that I can't believe it's been a year already since your surgery! I remember well how long you would talk about scheduling it and then canceling... I decided you were never going to have it done and then you proved me wrong, lol. I am glad you are doing well and sound so happy now.
Posted 4/14/2015 7:11 PM (GMT 0)
I am so happy to hear you say it Eva - I remember how much you fought against the surgery. It's nice to know that no matter how scary it sounds, it can be a solution. I am so happy for you :)

I remember Christine fought hard too and she's 100% happy post-surgery with her ileo. I guess it really depends on the person but I see a lot of people here first-hand who are happy and only a few who are unhappy. embersglow is happy too.
Posted 4/14/2015 7:23 PM (GMT 0)
Speaking of fighting it....we did too. It was a hard to wrap my head around the idea that all that fighting was for naught...still a colon seized.
But, my girl is also doing pretty well. Surgical post op visit yesterday after takedown. They are quite pleased, no pain, no accidents, and she is moving on. Taking an out of town internship,and back to school in Aug. The brave people before us served as inspiration-you, Eva Lou and others above. Thanks and continued healing of body and spirit.
Posted 4/15/2015 5:36 AM (GMT 0)
Thanks mucho for updating us, Eva! So glad to hear you can really enjoy life now. I think you were very brave dealing with all the past treatment disappointments + confronting the permanent ostomy issue head-on. It does seem like UCers who had several Rx treatments fail them also tend to experience continuing problems from a j-pouch surgical process; in light of those situations reported here on the forum, you definitely chose your option with wisdom. I hope you'll still drop in here from time to time to keep in touch. How was winter on the Cape? / Old Hat (34 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 4/15/2015 12:14 PM (GMT 0)
thanks for the well-wishes, everyone! It's funny, I truly feel blessed nowadays- seriously, I was pretty wretched before, for sooo long. For me, the choice of the perm ileo was a no-brainer.... I suppose every now & then I look at my body & think "huh?". But not often. I looked much much worse before surgery, in all ways. Everyone on the forum (both UC & Ostomy) has been so supportive, & that made a huge difference. I only chose surgery, in the end, because I had to, there were no other options & my colon was becoming totally blocked from scar tissue. So, it wound up being a relief. And I do eat everything! Pepperoni pizza, salads, tons of cruciferous veggies, beer, wine, candy... good stuff too, stir-fries, sushi, tofu, cheese.... No blockages ever. I have been very lucky to find myself with zero surgical complications- every possible problem I thought of just never came about. And god, the biggest relief?? No longer having the surgery hanging over my head. So freeing- it's done. Old- Hat- winter on Cape Cod was a nightmare, frozen nightmare.. but it's in the 50's today! Gotta love Spring. My UC now is a bad memory, I can't believe I allowed my colon to take up so much of my time & thoughts. 12 years.... how stupid!
Posted 4/15/2015 12:30 PM (GMT 0)
I'm so glad to hear that you are doing well :-) I hope you have many years (and forever) of being problem free!
Posted 4/15/2015 3:55 PM (GMT 0)
Eva, it wasn't stupid to wait 12 years to have surgery, surgery is a very big deal and scary and you didn't know how your UC was going to behave...but thankfully that is all behind you now and you never have to look back if you don't want to...you also have gained wisdom from your experience that you can share with others that need it so there's one positive aspect.

Just so glad you're so happy and feeling so good and still taking care of your health...enjoy your life!!
Posted 4/15/2015 6:06 PM (GMT 0)
Congrats Eva! You sound so happy:)

I have to ask...how do you have sex with the bag? Do you just wear lingerie to "hide" it? Does it get in the way? Sorry to be personal, but you mentioned sex and I've been wondering....although I'm still fighting to keep mine, surgery is more at the forefront of my mind these days. I believe you are married...but us single people, I wouldn't know how to approach this.

Thank you:)
Posted 4/15/2015 11:23 PM (GMT 0)
Hooray!
Posted 4/16/2015 12:14 PM (GMT 0)
hey rbartolo1 I've been thinking about you- the bag doesn't get in the way during sex, I sort of flop it upwards & usually wear a wife-beater, or tank top. Some people wear tube tops, just around the bag. You could wear a lacy teddy thing too. Some poeple are totally naked, it's strictly personal preference. I imagine in a year or so, totally naked will be routine- just not yet, for me. The actual stoma is about 2 inches to the left of my belly button, & maybe 1 inch below the belly button line. so it's really not that close to the genitals. I am married, & my husband is just glad to have "me" back. Also, the fact that I'm in the mood so much more frequently.... Hope you're doing ok- I am happy, it's just nice to be so free of worry.
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