Hello, 

im sorry I may not be of help as I had no experience with colitis. I think biopsies can give them clues or diagnosis to some disease like cancer and Chrohns.  I did have a total proctocolectomy, my choice after 2 years with my loop the doc asked what would you like to do? He gave me choices and one was to hook me back up. Another was some type of pouch I think where the poop could still come out of the rectum but I had rectal pain and throbbing there constantly before the loop. I told him no I’m not wanting to go back to the way things were and to just take out the whole Colon and the anus. We knew the Colon was not working because they had to abort a colonoscopy when I had my loop because I was constipated with hardened mucous balls. He said I was packed. Could not even get them all out. they did send my colon and Anus  to pathology during my proctocolectomy and could find no disease. Therefore IBD or just really bad constipation. One doctor felt that a medication I was on for years could have ruined my colon. Regardless, I am very happy with my decision. I have a life now. I’m no longer in pain and stuck in the house because I was in so many laxatives I had to stay in just in case they would start working. In the end I was in about 5 laxatives daily and still in the ER packed up almost every night. They even had me drinking the big jug of go lightly the colonoscopy drink and that even stopped working for me. 

as for cloths to hide the Ostomy. I resorted to a corsinol Ostomy support garment, leggings and Flowy tops or tunic tops with some flow. 
For the leaks it may be time to see your Ostomy nurse. Maybe switch to a different pouch, try rings, making sure the hole cut for the pouch is not too small or too big. Hair conditioners in the shower can affect adhesive to loosen. Washing hands before emptying. Soaps used in the shower. i would not use any moisturizing soaps. For instance if I use conditioner in the shower it does get in my Ostomy area no matter how hard I try to keep it away. The bag will still stick at first but will be leaking or falling off within an hour. Be careful of hand lotions if she’s touching her bag with them in. So many things to think about. 

Hi guys, 

Well, my daughter saw her GI and surgeon and her entire colon, rectum and anus were shot so she converted her loop ileostomy to a TAP with EI.  Surgery wise she did o.k. but she was severely nauseous, fainting etc.  They discharged her on post op day 4 but on day 5 she went back to them in pretty poor shape.  Turns out she had portal vein blood clots that were making her sick so another couple of days in with heparin IV and she was again discharged this time on blood thinners for a few months.   

My question for you all is this, her bottom where they sewed her up is really bothering her.  She just can't get comfortable.   We called the surgeon and got something for pain but now it is also itching (which I assume is a good thing because I think itching means healing).  Any suggestions of what to do for this itching?  

We are supposed to get on a plane tomorrow to fly home and I am not quite sure how she is going to endure the 8 hour trip.  I woefully underestimated what was involved here.  

I did buy some sort of cushion thing (not the donut kind surgeon advised against that) but I just know this trip will be torture for her:( 

@momof2 wow - I’m sorry to hear about what your daughter has been through. Having been through the sewn up rectum/anus, I do understand how excruciatingly uncomfortable it is. I used a cushion called TushCush that has a keyhole cutout in the right spot. There are lots of cushions of that type, of different brands, but that one was a lifesaver for me at the time. I can’t help you re the itching - maybe check with her surgeon. This will be a very difficult journey home for her. Any chance you could delay the flight home for a few days?

Laurie

Thanks @tigerlily.  She is still not able to eat anything.  She just managed 100calories of a cereal but vomitted right after.  I suspect it was the dilaudid she took this morning.  First one since being discharged.  I am spending today really pushing the rehydration solution but seriously wonder how we are going to get on a plane tomorrow.  

I feel for your situation, I also have always heard itching is a sign of healing. Just a thought 💭 those ice blocks for cool bags I wonder if placed under the cushion would they keep down sweating and give more comfort. Or is there some sort of a cool gel cushion. The very best wishes for you all 🙏👍

Sending good thoughts and best wishes to you and your daughter for a smooth trip home and a smooth recovery. You are both such troupers, brave beautiful ladies.  God bless you.

O.K. gang.  Here is another question.  My daughter is 10 days post op.  Last week when she was readmitted and they did a ct scan and found the blood clots, they also found some built up fluid.  The surgeon removed two stitches bedside and poked around a bit and told her the next time she got up she would feel a gush of fluid and that would relieve the pressure she had been feeling.  

She didn't gush necessarily but she did trickle fluid pretty constantly and the pressure was relieved.  

Fast foward to now.  Yesterday she soaked the pad she was wearing, she laid down after her shower and got up a couple hours later and had soaked through the towel she was laying on and then when to the bathroom and was dripping blood (light colored like mixed with fluid) and then literally it was like she was pee'ing out of her bottom, lots of blood tinged fluid.  

We are supposed to be getting on a plane to fly home today.  Is this kind of drainage 10 days post op usual?  I am thinking maybe this is the gush he was talking about and it just got delayed few days?  

Her stoma is working beautifully.  She still has no appetite and is only getting about 500 calories in (most of it Boost or Ensure).  Just wondering if we should get on that plane or call the surgeon. Probably call.  

Hi There, My thoughts are if you have doubts or concerns better to contact the medics. I have to add I still have my rectum, but better safe than sorry. Glad to hear the New Stoma works well and the appetite will return slowly 👍

@momof2 awe I’m sorry she is having some after surgery issues. I had the same surgery. Yes the bottom is going to be sore for some time if not months. I still get irritation there in the summer from sweating . Buy her a hand held shower head for her shower so that when she is showering she can be sure to keep that area well cleaned. One of my doctors team members suggested it when I had mine and it helps. It will help keep gunk from forming there. I think I had a cushion to sit on for a while and I can remember sometimes sitting a little sideways. I think I wore no underwear as to air that  area out at night too. 
After it healed up a bit I used calmoseptine on it. 
I’m not sure about this gush of fluid or draining but I had drain tubes in but were taken out when I went home so maybe my fluid went there. I’m sure the surgeon knows best in your case. I wouldn’t get on the plane. I’d stay close to the surgeon until she’s totally ok.

We went back in this morning just to be sure.  The PA probed around and was able to find another sac of fluid hanging out up there.  They were concerned there might be more fluid and perhaps an infection.  Blood labs and CT confirm both.  So she is starting on antibiotics and going back to surgery center tomorrow for an exam under anesthesia and to have a drain placed back in.  

@momof2 I’m so glad you did not get back on that plane. I’m surprised they did not admit her. But I guess sometimes it’s better not to admit due to hospital infections. I would suggest staying there until she is fully healed up because they know the history and what’s going on and did the surgery etc., I wouldn’t be getting in any planes leaving anywhere till then. Sending prayers and wishes of wellness and healing. 🙏  keep us posted.

Posted by: @momof2

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We went back in this morning just to be sure.  The PA probed around and was able to find another sac of fluid hanging out up there.  They were concerned there might be more fluid and perhaps an infection.  Blood labs and CT confirm both.  So she is starting on antibiotics and going back to surgery center tomorrow for an exam under anesthesia and to have a drain placed back in.  

Good call! I'm so sorry that she's going through that. The post-op and healing phases are generally miserable, but I think once things stabilize, it will become progressively easier and more manageable for her.

i had a drain tube out of my butt for 6 weeks.   was sore for weeks but not to the point of being uncomfortable.

Hey guys, 

So she did end up having to come in for surgery yesterday.  They were able to get all the fluid, infection and a hematoma (which might be because she is on blood thinners because last admit after the surgery they found portal blood clots).  That's all the good news.  The bad news is she had some sort of weird, rare complication.  Her wound is not healing at all.  So they packed her and put this ginormous drain thing in her bottom.  She will be inpatient for two weeks and then we probably have to stick around for another two weeks.  

They are doing an MRI tonight or tomorrow and taking her back to the OR on Friday.  The surgeon said he might be able to surgically implant some sponge vac thingie (pretty sure that is the technical term) that will pull her tissue together and aid with healing.  He will have to surgically change it out every few days.  The whole process will take a month.  After two weeks though if she is doing well, he might let her go home and see a surgeon closer to home who trained at this center to handle the vacuum thingie charges.  

The great news is that this is not disease.  The disease is gone.  This is temporary.  It will heal and then she could go back to her happy ostomate life.  

The surgeon and I were reflecting on how some might say that it was a shame that she had the diversion for a year only to end up here but we look at it as the diversion got her to a healthy place where she could weather these set backs.  There is no way, as sick as she was that she would have been able to deal with this.  

Oh yeah and the really big plus of the three admits…..she gets visited by stoma nurse every few days and every discharge they give her supplies to take home so she is building quite the war chest of supplies;) 

Hi There, That’s a great update to hear. The line in yer post that stands out is “Her Happy Ostomy Life “ Your daughter and you all are travelling on a rough track at this time but the road ahead is smooth. She’s a young lady and with no illness and a good working stoma a lot of adventures lie ahead. Best wishes 👍👍👍

@momof2 I love how you were able to reframe this experience, and see the positive side. I remember you talking about how ill your daughter was, so yes - she needed some time to get strong enough to cope with this - emotionally as well as physically.  SO glad you didn’t get on that plane!

 I had a difficult time healing with my perineal incision - in fact, it took well over two years for it to close, but that was because of radiation. I don’t recall your daughter having radiation treatments. My incision finally closed after six weeks of daily hyperbaric treatments. I’m not sure if that would be helpful, but maybe something to ask about. For me, it was the only thing that worked, even after over two years of daily wound care. I’m hoping that your daughter will have a much less complicated recovery.🤞

Laurie

@momof2 I’m sorry she’s going through all of this but it sounds like they are on top of things. So glad to hear that they found the problem and taking care of it. Wishing her a speedy healing.

Procedure is on hold.  She has an abscess. We are going to pow wow tomorrow to decide next steps.  She also will likely need a blood transfusion as her H&H are tanking.  This is temporary! 

Again, I’m so sorry to hear this. Thanks for the update. Thoughts and prayers for healing.