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Ulcerative Colitis
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Posted 5/21/2017 6:26 PM (GMT 0)
Great news!!

A couple thoughts on the weight of the pouch and wardrobe.

I did not buy any ostomy underwear I didn't really want the pocket. I have been wearing Warners no pinching no problem modern brief and it supports and covers the bag very well. Once I started wearing these I was able to wear a few things in my wardrobe I couldn't before. Also very reasonable price and can find at department stores or Amazon. They have a cotton/ spandex version I like best I think that one is called something slightly different, it's for muffin tops. Muffin top, ostomy, same difference smile

Also I found Hollister to be the bag where weight was the biggest issue. Convatec and Cooplast seem to have larger landing zone or different weight distribution of the bag and I don't need as much support. Did you get any samples from thirst brands? Also both of these brands have bags wear the tail tuck up into the bag so nothing touches your leg. I had the same issue. I think the Convatec one with the tail tucks in is the Natura Esteem? And the Coloplast Senura Mio is the coloplast one. These are my two favorite 2 piece options.

Thanks for the updates, I bet your family is glad to see their mom on the mend!

Post Edited (cupcakespinkgal) : 5/21/2017 12:46:46 PM (GMT-6)

Posted 5/21/2017 9:40 PM (GMT 0)
Everything sounds perfectly normal and like a good recovery. What remains of your rectum still has UC and will discharge blood, which is a little alarming at first but to be expected. As you say temporary ileo, then after the jpouch is formed it will stop.
Posted 5/22/2017 4:40 PM (GMT 0)
I had similar issues with the discharge. I actually couldn't nap or I'd relax enough to where my rectum would discharge the mucus/blood by itself and I'd have to wear diapers. It gets better over time / with the jpouch.

For the weight issue, I got a ostomy belt for the bag which was covered by my insurance for ostomy supplies. It made sure to keep the top of the bag tight to my stomach when the bag started filling up, definitely worth it.
Posted 5/22/2017 6:41 PM (GMT 0)
Curious if the rectal lining is stripped or something before the j-pouch is attached?

q
Posted 5/22/2017 8:03 PM (GMT 0)
Your update sounds like things are going OK so far 👍 continue being positive and I hope your new G.I. works out, that's very important. The special underwear sounds interesting; I must agree I didn't like the weight of my bag pulling on my stoma site all the time. I bought an Ostomy belt and wore it a couple of times but decided I didn't really like it. I wasn't a fan of the original bag they sent me home with either, it seemed rather long, so I ended up getting the Hollister Mini bag. My ostomy site was rather high, above the navel, and the Mini seemed a better fit even though I had to empty it a couple more times a day. I must admit the bloody discharge would freak me out too; hopefully it is temporary, I can't say I know anything about that. Mine was more of a green mucus and actually lasted all through out the time I had my bag, not much, just a little from time to time, enough to be annoying.
Posted 5/22/2017 8:26 PM (GMT 0)

quincy said...
Curious if the rectal lining is stripped or something before the j-pouch is attached?

q

Yes, when constructing a j-Pouch they keep only a small amount of the rectum to keep continence, strip off the top layer and attach it the small intestinal-made jpouch. Before the jpouch is constructed, there is a fair amount of rectum remaining (but detached from the digestive tract), which can need canasa suppositories to treat the inflammation from UC.
Posted 5/23/2017 12:18 AM (GMT 0)
They only strip it if you have a Mucosectomy. Some surgeons do it, others do not. It's a difficult technique, considered old-fashioned, and not that common from what I've read. I have heard if you do it, the chance of getting inflammation on that area is smaller, but the chance of incontinence after surgery increases because of possible nerve damage. Mine was stripped and I am fine. I think in the case of a j-pouch revision, you're looking at it regardless. I had discharge after step 1 too. I went to the bathroom once in the morning and emptied, then i was fine. Mine wasn't bloody, but I've heard a lot of people say their's was. I guess it depends if you're inflamed. I didn't have UC symptoms once my colon was gone. It was surprising considering my rectum was always the worst.
Posted 5/23/2017 3:58 AM (GMT 0)
Ah....makes sense. Thanks for the explanation!

q
Posted 5/24/2017 5:08 PM (GMT 0)

Cupcakespinkgirl said...
I did not buy any ostomy underwear I didn't really want the pocket. I have been wearing Warners no pinching no problem modern brief and it supports and covers the bag very well.


Thanks for the clothing advice! I did get samples from coloplast that I am trying now, and having the tail tucked up makes a big difference. I think the pocket seems a lot less critical with this option. The less specialized stuff I have to buy, the better!
Posted 5/24/2017 5:20 PM (GMT 0)
An update on the new GI specialist:
He was friendly and personable, and I felt like he listened to me and took the time to answer my questions. He also seemed genuinely interested in UC, which was nice. I think I was less combative than with my last specialist, though, because I'm not at defcon-5 sickness anymore, so probably several factors at work there! blush
I took my husband with me for a second human opinion, and my husband thought he passed the test too.
I had to call the office twice the day after my visit, and I was able to be through to a human both times and get help easily. That's huge for me, since a major factor in leaving my last specialist was the difficulty getting a real human being.
They seem very ready to work with my Mayo doctors.
The only downside was that I had bloodwork drawn and still haven't heard the results, almost 48 hours later. I know the Mayo has spoiled me in that respect: I'm used to seeing results posted to my account as soon as they are processed. I know 48 hours isn't that long, but I love getting results ASAP. I know that the doctors need to review, and I want their interpretations, but at the same time, I know the main values I am tracking and just want the numbers!
I'm relieved to have found an office where they will treat me like a human being ... Glad to not be on the search anymore.
Posted 5/25/2017 2:29 AM (GMT 0)
You should try the coloplast mio set up. They make a midi size bag that's shorter. I always wanted ot use their stuff, but they didn't make a convex in the mio at the time, and the other wafers seemed to stiff to me. I guess all their wafers are on the stiff side. I always loved the hollister wafer but I hated that the pouch was so long. Then they have a mini pouch, but it's TOO small. They need to make one that's like 2 inches shorter for shorter people. Of course I put in the suggestion to them, but I am sure they don't care what i want. The closed end pouch is a better length but you can't empty it. I had some samples of those and I used them here and there. Happy to hear you found a new GI that seems like a better match. I never see mine anymoe. I actually haven't since I had surgery. I never went back to a GI. I did got to my surgeon for follow up throughout the first year, but i haven't been back since.
Posted 6/17/2017 3:22 PM (GMT 0)
Notsosicklygirl: Thanks for the advice on the underwear ... It's perfect! Also, I have tried out the Coloplast Mio, and I like the two piece click system quite a bit. Definitely a better summer option than the Hollister ones I had, which got damp in the humid heat.
A general update: it's been six weeks since surgery, and I am getting back to life as usual. I feel about 70-80 percent normal, which is a huge improvement over pre-surgery. The ostomy has been easy to manage, and I've been able to eat anything, including salads. My body is so happy to have fresh fruit and veggies again! I'm tapering off of prednisone, which is easier when I don't have to worry about it starting flares. I'm at 5mg now and will be off by the end of June.
Now that I don't have the weight-lifting restriction, I'm trying to figure out how to regain some muscle tone, especially in my abdomen and upper arms.
Posted 6/17/2017 11:13 PM (GMT 0)
Awesome, glad you're doing well!
Posted 6/18/2017 2:29 AM (GMT 0)
Great to hear the new GI passed the test 😊
q
Posted 6/18/2017 2:47 PM (GMT 0)
Glad to hear things are still going so well!

The exercises that helped me most with the core post surgery were yoga and the Coloplast Core 4 exercises to start. It was a program for the UK but if you google Coloplast Core 4 UK there is a video and pictures. It helped me start engaging and strengthening my core so I felt more comfortable starting more exercise.
Posted 6/19/2017 2:53 PM (GMT 0)
Be careful on ab exercises early on since you don't want to tear anything. Yoga as recommended is probably a good start as well as overall core exercises more so than ab specific workouts.
Posted 6/20/2017 2:57 AM (GMT 0)
Congrats Kanva! Your results are very encouraging! Getting off prednisone and feeling 70-80% "normal" sounds awesome to me! Rock on!
Posted 7/3/2017 4:28 PM (GMT 0)
I'm done with prednisone! I finished my taper on Friday, and it's amazing how much easier it is when you don't have active disease. Yay yay yay!
Posted 7/3/2017 4:47 PM (GMT 0)
Congrats! Getting off of pred is an enormous victory! Hooray!
Posted 7/3/2017 4:51 PM (GMT 0)
👏🖒😆
Posted 7/5/2017 4:11 AM (GMT 0)

Kanva said...
I'm done with prednisone! I finished my taper on Friday, and it's amazing how much easier it is when you don't have active disease. Yay yay yay!

Woot! So envious of you! I'm stuck at 35mg until something (Stelara) works or I have the surgery.
Posted 7/16/2017 4:38 PM (GMT 0)
This week I scheduled my second surgery for October 13. It's a lot easier to wrap my head around this surgery, because I know the clinic, know th surgeon, what to expect checking in, in the hospital, etc.
Now my big goal is to keep regaining muscle and cardio strength until then!!
Plucky, I'm keeping my finger crossed for you, hoping Stelara helps!
Posted 1/15/2018 11:17 PM (GMT 0)
Time for an update:
I didn't get to have my surgery in October, because I had a blood clot in my mesenteric vein in July. I had to take blood thinners for three months, and then the clot was gone. Now I have surgery scheduled for January 24 at the Mayo Clinic. I’m having a hard time getting myself excited about this surgery, because I feel so normal right now. I don’t want to go back to being “sick” or having to recover again. That said, I know I want to get it over with so I can just get back to life as normal.
Posted 1/16/2018 3:07 AM (GMT 0)
Wow, January 24th is right around the corner. I am happy for you. After that step, you're just 8 weeks to reconnection. I can't wait to see you on the other side smile
Posted 1/24/2018 9:30 AM (GMT 0)
Here we go! I head to the hospital in a few hours, and I’m ready to get on with it!
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