Ostomy reversal, so where do I belong now?

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Doggiedo
Veteran Member


Date Joined Jan 2014
Total Posts : 650
   Posted 11/11/2017 11:18 AM (GMT -7)   
I just had my reversal surgery last week and my J pouch is up and working. I’m not sure where that puts me. Where do I post? I don’t have UC anymore, technically, and I don’t have an ostomy anymore.

I looked up a local ostomy support group, but am not sure I fit in there either. They also only meet once a month and I’ve already missed that meeting this month :/

I’m having hard time with my recovery - specially running to the bathroom every hour bc I can’t hold it. It’s painful and although it is getting better with each day, I’m just feeling reallly alone and alienated. I’m
Not driving yet and don’t have much to do other than watch tv.

I go to my post op on Monday and get my staples out. Did I mention my incision is still oozing a little, which also concerns me. I am going to take another week off work bc my bathroom trips are so unpredictable. I’m nervous about going back to work, but also worried about not going back to work- idk what That will do to my mental outlook if i stay home alone another week.

Where do I fit in and how do I get out of this rut?

momto2boys
Veteran Member


Date Joined Jun 2013
Total Posts : 1866
   Posted 11/11/2017 11:28 AM (GMT -7)   
You are more than welcome to stick around here. As far as I can tell, just because you no longer have a colon doesn’t mean you don’t have UC, Plus your experiences are valued. I can’t speak for the ostomy board folks.
I think you should give yourself time to heal and not worry too much about work for now. Hopefully nssg and others with j pouches can offer you some specific advice on your current situation.
42 yrs old diagnosed with proctosigmoiditis 6/13/13
meds- 2 Lialda + sfRowasa every other night- supplements: probiotics (1 VSL3 cap, 1 culturelle and 1 reuteri) 1 gram krill Oil, 1TBSP p. seed powder, 2 g curcumin. Allegra for seasonal allergies as needed. Allergic to sulfites. Currently gluten/dairy free (except yogurt) and eating lots of RS.

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1997
   Posted 11/11/2017 12:54 PM (GMT -7)   
It cannot be easy, but you have got through the worse!!! I think taking another week off is a good idea and maybe after that you could go back to work, as I think if you are isolated for too long that cant be good for you either.
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Failed Pentasa, Azathioprine and finally Methotextrate due to allergies/intolerance. Taking Humira. Have finally come off Prednisone Yay!!!

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15424
   Posted 11/11/2017 1:27 PM (GMT -7)   
I didn't have any staples, but mine did ooze a bit for a while. I was wearing huge band-aids loosely or gauze for quite a while otherwise it would get on my clothes. You're so soon out from the take-down, it takes time to get the hang of everything. It is normal to go often at first - it gets better, i promise!! Take it easy. You will be feeling better before you know it. You can post here, or there, I go to both places personally.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

TroubledTurds
Veteran Member


Date Joined Jan 2004
Total Posts : 8035
   Posted 11/11/2017 4:17 PM (GMT -7)   
ya, i was gonna say, just post anywhere, NSSG will find you -
dx'd with pancolitis 12/21/03
current supplements:vit D, cal/mag, Psyllium Seed powder/Heather's Acacia fiber/ L-Glutamine/Hemp powder slurry 1x/week - grain free/paleoish diet that includes 100% grass fed beef, raw goat milk, & local organic free range eggs, lots of all natural well water, exercise, sleep as much as possible & enjoy this great life that God has blessed me with !

Doggiedo
Veteran Member


Date Joined Jan 2014
Total Posts : 650
   Posted 11/11/2017 5:46 PM (GMT -7)   
THanks everyone. It sounds reassuring to hear that I’m still welcome to post. I was still going to respond to others’ posts ar least, since hopefully I can be supportive and share what I’ve been through in hopes of helping others.

My husband and I ventured out - my first outting since surgery, and had dinner at a local diner. It was a quick meal and light, and i knew where the bathrooms were so overall a good trip. But it did reinforce how uneasy I am about going out in public (even with a depends on, wipes and a backup depends). I also didn’t realize how awkward it still is for me to walk and how slow I am. I guess staying home this week and resting is the best idea! Idk how i would have been able to handle work this week. I work in a big university so even walking to and from the parking garage is a feat!
UC since 2003, hospitalization in 2006, Feb 2017, July 2017

Precious meds- Asacol, Imuran, Prednisone, Apriso, Entyvio, Remicade, Jax-inhibitor trial drug, cort enema and supps

Step 1 & 2- ilestomy and j pouch creation - Aug 2017
Step 3 - Nov 2017

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15424
   Posted 11/11/2017 9:41 PM (GMT -7)   
TroubledTurds said...
ya, i was gonna say, just post anywhere, NSSG will find you -

I will certainly try!

I am happy you got out, that's a big step. It's weird because you will have good and bad days, but over time, the bad days will be less often, and you will learn to deal with the challenges, and before you know it, you will not think about UC anymore. No more drugs, no more picking up scripts, no more follow ups, no more scopes... It's the good side of having the worst of the worst cases. I can't wait to see you get there. smilewinkgrin
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

quincy
Elite Member


Date Joined May 2003
Total Posts : 29859
   Posted 11/12/2017 11:07 AM (GMT -7)   
I would assume you'll post where you like based on your experience and questions. Besides, updates are always required 😊

Good you are doing ok and getting out after the reversal...hope the incision heals well.

My only suggestion is to make sure you don't overdo, and can you start at work with limited hours?

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg / Amlodipine 5mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 15 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

Post Edited (quincy) : 11/12/2017 11:10:35 AM (GMT-7)


Bull101
Regular Member


Date Joined Feb 2015
Total Posts : 460
   Posted 11/13/2017 7:55 AM (GMT -7)   
I'd recommend doing kuegels or something along those lines. Even after my takedown I feel like I had to go more often and it was very uncomfortable, a lot of pressure very often that makes you feel like you have to go, but I was at least able to hold it for a little while until I found a bathroom. If you're having trouble with that and need depends I'd strongly recommend trying to strengthen those muscles.

Doggiedo
Veteran Member


Date Joined Jan 2014
Total Posts : 650
   Posted 11/13/2017 7:46 PM (GMT -7)   
Keegels- good idea. Unfortunately by evening my butt is too sore to do them. I’ll try and remember. Idk why my doc didn’t suggest them. I try and hold it as long as possible when i get an urge. I can always make it to the bathroom so that’s reassuring.

I went to the doc today and we discussed me going back full time next week. I thought about limited hours but it’s a good 30 min drive to get there so i figure if I’m there, I’d rather just stay the day. Next week is just three days anyhow bc of the holiday. If my bathroom refining isn’t back to normal (as much as it can be normal), I’ll just take another week off. Thank goodness for FMLA.

Doc took out the staples and it’s a lot more comfortable now. She put steri-strips onnthem and said to leave them on until they fall off. I’m game with that. Anything to make sure it doesn’t open. It’s such a tough spot! She also said I can take 3-4 Imodium a day to try and stop going as much. It’s a relief to know that will help things.

I came home from my appt and slept 2 hours. I hate sleeping so late inntrhe day but I must have needed it. Here’s to more healing....
UC since 2003, hospitalization in 2006, Feb 2017, July 2017

Previous meds- Asacol, Imuran, Prednisone, Apriso, Entyvio, Remicade, Jax-inhibitor trial drug, cort enema and supps

Step 1 & 2- ilestomy and j pouch creation - Aug 2017
Step 3 - Nov 2017

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15424
   Posted 11/14/2017 9:01 AM (GMT -7)   
That sounds positive. I think you just need to give yourself some time. If you can do 3 days at work next week that will give you some confidence. I would imagine everyone will have a short day Wednesday too, which is nice, but see how you feel. No reason to rush. I worked from home pretty soon after surgery, but sitting home at a desk working, and going to an office are two very different situations. I hope you're feeling better soon.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

Bull101
Regular Member


Date Joined Feb 2015
Total Posts : 460
   Posted 11/21/2017 9:09 AM (GMT -7)   
Hey Doggie,

Just FYI, I'm a year out and I still take 2 immodium in the am, 2 in the afternoon and a lomotil at night. My doc is perfectly fine with it. I'm just worried about long term it losing it's effect.
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