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Kanva

HealingWell Forum
>
Member Profile
Display Name
Kanva
Profile Created
3/18/2017 3:19 AM
Last Seen
8/28/2019 6:16 PM
Total Posts
150

Last 50 Posts

Need some encouragement

Valli1234: I’m feeling pretty good. I’m alternating two weeks on ciprofloxacin, two weeks on vancomycin. When I’m on the ciprofloxacin, I feel amazing ... 4-5 stools a day, no burning or bleeding. I...

8/28/2019 6:07 PM

Ostomies
Need some encouragement

My appointment at the Mayo was yesterday, and it went well. It was such a relief to be treated like an intelligent, reasonable person who has legitimate questions! I definitely made the right choice...

7/3/2019 6:29 AM

Ostomies
Need some encouragement

I’m feeling pretty good. The bidet is helping with skin issues. I still have a lot of burning and urgency and am going to the bathroom more than when I was on antibiotics, but nowhere near as bad as...

6/22/2019 7:38 PM

Ostomies
Need some encouragement

Update: my C diff test was negative, so good news there. A friend who also has UC randomly reached out to check on me, and when I told him I was having a hard time finding a good GI doc, he told me...

6/16/2019 8:33 AM

Ostomies
Need some encouragement

Thanks. It makes me feel better to hear I’m not imagining things. I sometimes wonder how many GI doctors have a real understanding of what it really feels like to have chronic pain that can be hard...

6/2/2019 9:40 PM

Ostomies
Need some encouragement

My doctor hasn’t said chronic pouchitis. I’m just jumping to the worst-case scenario. The first course of ciprofloxacin helped, then things got worse. The second course helped a lot, then after a...

5/31/2019 10:18 PM

Ostomies
Need some encouragement

I could really use some encouragement. I having issues with my doctor and some health roadbumps, and I could use reassurance that I’m not pushy or imagining things or expecting too much. This is...

5/30/2019 3:33 AM

Ostomies
Do you get nervous seeing the Doctor?

I can feel myself start to shut down and tense up the minute I’m in a doctor’s office. I hated being so sick that I spent so much time there, and going back makes me remember that dark place....

5/30/2019 2:27 AM

Ostomies
Pouchitis, cuffitis, UC?

KS, thanks for the info. I’ll check out j-pouch.org. Woogy, I haven’t seen my Mayo doctor since my surgeries, so I’d have to visit again before they’d prescribe meds. I feel like it might be a...

5/3/2019 9:32 PM

Ulcerative Colitis
Pouchitis, cuffitis, UC?

KS, thanks for sharing. I read the thread you posted, and it was encouraging. I’m so scared of having another chronic disease, because my mind translates that to feeling like I did with UC. It’s...

5/2/2019 9:13 PM

Ulcerative Colitis
Pouchitis, cuffitis, UC?

My J-pouch is almost a year old, and I’m struggling with inflammation. This is going to be a long post ... sorry, but I feel like I have a lot to explain to get to my questions! I felt pretty...

5/1/2019 10:06 PM

Ulcerative Colitis
New to j-pouch, need advice about pain

These suggestions are all helpful. It’s good to know some of the OTC things I can try, and it’s also good to be able to cross fissures off my worry list. I’m not in a lot of discomfort right now, so...

7/28/2018 8:53 PM

Ulcerative Colitis
New to j-pouch, need advice about pain

I had step three (takedown) surgery six weeks ago. Overall, my recovery is going well, but I do have some itching/burning that I’m hoping for some input about. I knew that the skin around the anus...

7/25/2018 5:00 PM

Ulcerative Colitis
Saw surgeon today about failed barium test and what we do now before 3rd surgery?

Oof. Sorry to her about the complications ... hope it’s nothing to worry about....

7/25/2018 4:53 PM

Ulcerative Colitis
J pouch recovery slow

I had the three-step j-pouch process, and my last surgery was six weeks ago. Looking back, I can see a difference in each recovery, but each was/is difficult. I can see that, while my health is...

7/25/2018 2:53 PM

Ulcerative Colitis
My surgery journey

I feel so much better than I did a few days ago! I stuck with a liquid diet and rested for two days, which wasn’t quite as bad as I had feared. I had some bone broth (finally found some that didn’t...

6/15/2018 9:09 AM

Ulcerative Colitis
Another J pouch Question

I had three-step j-pouch surgery and had the third and final surgery five days ago. Recovery after step one was a long haul for me because my body had been so depleted by ulcerative colitis. I don’t...

6/13/2018 5:12 PM

Ulcerative Colitis
My surgery journey

No nausea meds, but I haven’t asked either. They sent zofran with me for the drive home, but I think it sometimes makes me feel a little weird, so I haven’t taken it. I had a vomit-free night, so I’m...

6/13/2018 5:12 AM

Ulcerative Colitis
My surgery journey

Oof.... dealing with a lot of nausea, which is no fun. My doctor and I believe my intestines are slow to wake up (ileus), which I know is a common issue. I was surprised by it because I would feel...

6/12/2018 8:17 PM

Ulcerative Colitis
My surgery journey

Turns out that having my intestines wake up has given me some negative flashbacks to pre-surgery. The gurgling, some cramping, needing to restrict my diet, and increase in urgency ... It's nowhere...

6/11/2018 10:23 AM

Ulcerative Colitis
My surgery journey

Well, my third surgery is in the books. Takedown was Friday afternoon, and I was discharged today (Sunday). Pretty quick turnaround, but I felt so much less fuzzy and painful than I did with the...

6/10/2018 5:46 PM

Ulcerative Colitis
Takedown surgery was a success HELLO J POUCH!

This is a very timely thread for me, since I'm having takedown surgery on Friday. Thanks for the details on how it’s going ... it helps me mentally prepare! I also find all the information...

6/3/2018 3:33 PM

Ulcerative Colitis
My surgery journey

NSSG: I’m definitely a little nervous about the after-surgery adjustements. Its hard to imagine what it will be like to have a digestive system again. But knowing that I’m healthy going into it...

6/3/2018 3:25 PM

Ulcerative Colitis
My surgery journey

I'm headed to my third and last surgery next week at the Mayo Clinic (takedown of the j-pouch). It's hard to believe that I'll be done with ostomy supplies after this (fingers crossed). I'm dreading...

6/2/2018 10:30 AM

Ulcerative Colitis
Should I be worried?

Plucky, It sounds like a permanent ostomy is a good choice for you, and I’m glad you’ve found something you can be at peace with! I have my last j-pouch surgery in June, and then I’ll be ready to get...

4/9/2018 7:20 PM

Ulcerative Colitis
Should I be worried?

YES!!! This is fabulous to hear, Plucky! Like you, I've been busy living my life, and it's wonderful to be aware of what's around me again, sad to have missed it in the first place. You have earned...

4/9/2018 10:13 AM

Ulcerative Colitis
Surgery scheduled - Moving on!

RunJerRun - My surgery schedule has been more drawn out than I would like. I was supposed to have Surgery 2 in October, but I got a blood clot three months after the first surgery. Bleh. Luckily, it...

3/16/2018 9:17 AM

Ulcerative Colitis
Surgery scheduled - Moving on!

I’m glad your first surgery and recovery went well. I had Surgery 1 at the Mayo in May 2017, Surgery 2 in January, and will have Surgery 3 sometime May-June. Tapering off the prednisone after the...

3/14/2018 2:06 AM

Ulcerative Colitis
Update

I’m glad you have the problem figured out and that you’re healing well. Hope you don’t even have to use the cipro much!...

3/14/2018 1:54 AM

Ulcerative Colitis
My surgery journey

Thanks, everyone. I survived my first week back at work, but not too well. I don’t have anything left by the time I get home. I know I just have to keep moving forward, so that’s what I try to do. I...

3/11/2018 7:34 PM

Ulcerative Colitis
My surgery journey

Well, I’ve been away from the forums for a bit. My sister died of colon cancer two weeks ago, so it’s been a blur. I started back at work full-time today. It was a relief to get back to some...

3/5/2018 8:58 PM

Ulcerative Colitis
What to expect from Step 3 of j-pouch surgery

3timechamp: I take Metamucil at night most of the time, but I’m not having a hard time with output overall. It still tends to be more liquidy than after step 1, but it’s gotten a lot better since...

2/22/2018 7:36 AM

Ulcerative Colitis
What to expect from Step 3 of j-pouch surgery

Oh, I’m just talking about after step 3, so emptying your j-pouch. I’ve heard some people describe recovery as weeks of nearly constant diarrhea. I’m so in the routine of emptying my ostomy that I’m...

2/20/2018 8:23 PM

Ulcerative Colitis
What to expect from Step 3 of j-pouch surgery

I have read quite a bit about people’s experiences with j-pouch surgery, but now I am focusing on step 3 surgery and trying to remember what to expect. Could those of you who have gone through it...

2/20/2018 6:17 PM

Ulcerative Colitis
Anal discharge at night with loop ileostomy

I’m 3.5 week’s post loop ileostomy surgery ... Step 2 of my 3-step j-pouch surgery. I have had some anal discharge during the day, foul smelling at first but now clear and not smelly. It hadn’t been...

2/16/2018 2:56 AM

Ulcerative Colitis
Surgery date!

I'm glad your recovery is going well. I'm sure it is frustrating to have the ambiguity of the diagnosis left unresolved. But you're right, you have your life back either way!...

2/16/2018 2:50 AM

Ulcerative Colitis
Lifting after surgery and slight leakage after few days of changing bag

Uh-oh ... I’m glad you scaled it back early, and hopefully you’ll be fine. It’s really hard not to overdo, and it sounds especially true in your job. I know I’m getting super cranky about my weight...

2/10/2018 4:56 PM

Ulcerative Colitis
My surgery journey

It’s funny how well our brains can forget adversity like that, isn’t it?...

2/9/2018 11:13 AM

Ulcerative Colitis
My surgery journey

Big milestone for me today, giving me hope that there is light at the end of the tunnel: Two weeks and two days after surgery, I took a shower this morning and ... it didn’t make me exhausted! Then I...

2/9/2018 10:01 AM

Ulcerative Colitis
Step 2 scheduled March 19 will my bags still fit my stoma

Valli, I can definitely relate. I had step 2 surgery two weeks ago. My first surgery was last May. I was supposed to have surgery 2 in October but had to delay because of a blood clot. I spent months...

2/9/2018 8:23 AM

Ostomies
Blood Clots?

Moose, I hope the best for you. It is so scary to worry there is a bomb inside you that could detonate any time. I didn’t have blood clot issues while struggling with UC, but after step one of...

2/9/2018 8:06 AM

Ulcerative Colitis
4 weeks post surgery

Glad you hear you’re transitioning back to life well! The incision does make the wafer adherence a little tricky. I’ve been using barrier strips some to help with adherence. It means a lot of my...

2/7/2018 12:06 PM

Ulcerative Colitis
My surgery journey

Thanks for all the support, everyone! It helps to have other people who have gone through this. Plucky, it’s so great to hear you’re doing well, and yay for getting off of prednisone! Hopefully it...

2/7/2018 11:58 AM

Ulcerative Colitis
Appetite weirdness after surgery

I'm using Coloplast. I really like the smaller bags, and they dry nicely after a shower. Seems like Hollister is the main brand recommended by my doctors and nurses, but I don't like their bags...

2/6/2018 12:02 PM

Ulcerative Colitis
My surgery journey

Good news: I changed my setup today, and there were no leaks! My skin is looking much better, and I feel less itchy. I’m sticking with Coloplast, as that’s what seems to be working. Thank goodness,...

2/6/2018 10:40 AM

Ulcerative Colitis
Appetite weirdness after surgery

I think I need to order some barrier sheets and strips. Seems like I may need a little of everything on hand!...

2/6/2018 10:37 AM

Ulcerative Colitis
Change wafer or let skin heal?

Good news. I changed my setup today. It made it for two days with no leaks, and since I changed first thing in the morning, there was no output to battle. My skin is looking much better. I am...

2/6/2018 10:36 AM

Ostomies
Appetite weirdness after surgery

Definitely having plenty of output and drinking 70 oz. water a day. I did switch to a convex wafer, and then I added a belt - I didn’t initially understand their purpose. The fit of the wafer is so...

2/5/2018 10:25 AM

Ulcerative Colitis
Surgery date!

That sounds like a pretty goood report overall! I dread the lovenox shots. I do them in my thighs, which makes me squeamish enough .... can’t imagine having to do it in my stomach! Standing up...

2/5/2018 9:47 AM

Ulcerative Colitis
Eating marshmallows reduces ileostomy output: a randomized crossover trial

Interesting. I’ve been trying this since my last surgery. I’m still at the point where there’s almost always a drizzle of liquid output, so it’s been hard to tell whether it helps....

2/5/2018 9:41 AM

Ulcerative Colitis
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