Silent Lucidity

     I was just reading a few posts over on the topic ..Surgery, yea or nah?  You mentioned you had a chest xray which showed possible exposure to TB and were reluctant to try Remicade.  I didn't read all the posts so forgive me if I am in error.  If not, let me put your mind at ease with what I have to say:

     In my former GI's practice there was one other GI doctor who was very leary of my starting Remicade infusions.  His reason being that they had one patient who was exposed to the TB virus at one point in her life.  She chose to go ahead with the Remicade infusions regardless.  She had one infusion which resulted in her death.  When I was a young woman I worked in a hospital lab and was exposed to the TB virus.  I also had an aunt, through marriage, who died from TB and we visited her when I was a child.    Before going on a European vacation in 1967, I tested positive on the skin test for TB and had a chest xray which was negative.    I was tested again prior to my starting Remicade and everything was ok.    However, I was so worried that something horrible might happen.  Thank God it didn't.  But, Remicade failed anyway.

     I think you made the right decision.

Silent Lucidity, when I first had remicade it was like a miracle drug. I had become steroid resistant, and had been in the hospital for about two weeks, waiting to see if the IV steroids would ever kick in. Before then, I had been contemplating moving up from asacol to 6MP, so it was a huge shock when they started saying remicade -- felt like skipping a step, and that was a drug I never wanted to take. I waffled for a few days.... they told me it was 1/3 that it would work really well 1/3 some response, and 1/3 that it wouldn't work at all and then they'd talk surgery. I was scared out of my mind, but I was in the lucky third.... started feeling the inflammation go down within 24 hours, I went from something like 25 bathroom trips to 5 or 6 in a few days....

I don't remember the exact time frame, but within the first year, I had upped my remicade doses to the maximum dose and was having infusions every 6 weeks, not 8. Then about a year after my first infusion I stopped being in remission, and a a few months later was in the hospital again. Go figure, that time steroids worked, well enough, not fabulous, and I switched to humira.... which never really kicked in.... then cimzia, which didn't work either. When I had the really high fever on cimzia that I mentioned in the other thread, I felt like I was just done.... one of the nurses was trying to talk me into tysabri, but it was another 1/3 chance of working drug, with fatal brain infection as a possible side effect.....

But the reality is that you're never going to know whether humira could have prevented your surgery; it does work for some folks.... I hope you can come to terms w/that and just have enough good things in your post surgery life that it doesn't really matter all that much... but it takes time.

I'm on 7 weeks of bed rest and counting, and I was doing pretty well w/it, but last night I just had a crying jag in the middle of the night.... was just really feeling what I'd rather be doing, sometimes it's hard.... but still, so much is good, and I try to remember that too. So much easier to do when the weather is nice, that's for sure (it's unseasonably warm where I am, very nice....) Hang in.

One thing I find pretty useless is saying that someone "should" or "shouldn't" feel a particular way.... it never helps me. Not that I don't do it, but it really only drags things out to argue with yourself or feel guilty about a particular feeling, rather than looking at what info the feelings are telling you and dealing.... easier said than done, that's for sure.

In terms of which surgery, for me it was a whirlwind. I teach, and was in the hospital for ten days at the beginning of the semester (taught one week and then got sick). Got out and found out someone had been hired to sub for me until spring break.... had never missed half a semester before.... plus there just were no viable drugs left, pred was the only thing that worked at all, and my docs were adamant that that was not a long term option. So, it was only a few days out of the hospital that I decided on surgery, and I was pretty sick.

My gi said permanent ileo because I probably have Crohn's; his office said I'd have to go out of the country to get a j pouch w/Crohn's. Then the surgeon pushed me on leaving thigns so I could have a j pouch; she didn't want regrets, and she said I could do it in Cleveland, didn't have to be another country, but that seemed crazy, as I live in Boston and go to a hospital that many people travel to for treatment.

I was very surprised about the sewing the anus shut part, didn't realize they did that, and that's what gave me the most trouble about the decision..... I was more inclined to the bag anyways, as the thought of three surgeries was not appealing and I worried that the j pouch wouldn't work and it'd be just like being sick again. I wanted to be done. The bag didn't feel like a big deal, compared to how sick I was. I came to this list and heard a lot of people's stories and got a lot of support, and that helped.

My colon biopsied as showing no markers for Crohn's and then my butt wound didn't heal.... so I had a few second thoughts but not because I wanted a j pouch, just not wanting the butt wound. I did talk to my gi doc, asking why he hadn't recommended more of a wait and see w/the colon biopsy....was all so crazy then and I wasn't thinking so clearly.... he had been shocked by the outcome, and said that even if I have UC, it's some kind of Crohn's like variant, and my risk of failure w/the j pouch would have been higher, and my risk of cancer was high too.

Please don't take my issue w/the wound as typical though .... most people on here had the butt wound heal just fine. It is ironic that I only wanted one surgery, but I had to have another one for the wound..... was a much simpler one, though.... and the ridiculous bed rest is just so I stay off of it, I'm not sick....

I don't know why you have your rectum either.... do you have UC or Crohn's, sorry don't remember? Seems like you should ask your surgeon or gi doc (and maybe ask about stoma location too). When people have the proctocolectomy for the j pouch they leave a little bit of rectum (rectal cuff) and scrape out most of the inside of it.

Have you thought of a stoma guard for the bending and lifting? haven't tried one myself, but I've seen them advertised.

Drag about the jeans, but can you get another cut? I got some that are higher waisted than the ones I've had for years.... they are more comfortable.

     I had a total colectomy with end ileostomy but my surgeon did NOT sew my anus closed.  I believe he is one of the rare ones who do not do this.  I am still concerned about this decision of his because I do have "issues" inside the anus from time to time, such as itching and skin flaps (which never go away but he said just to leave alone).  By the way, my rectum and colon are both removed.

     The day I came home from the hospital I had a weird episode.  I felt like I had to urinate and all this foul smelling gunk came out.  I thought it came out my vagina but when I phoned my surgeon, he said it must have come out the anus.  That is when I found out the anus was NOT sewn closed..lol.  For a time after this I had bleeding from the vagina (I am 20 yrs post menopause).  I was thoroughly checked out by my gyn doctor, PAP smear, transvaginal ultrasound, CT scans of pelvic area...all negative.  My surgeon said the bleeding was just post op and not to worry.  Guess he was right. 

     He suggested I use Calmoseptine near the anus opening for any discomfort and that really helps.  I mentioned my concern about the open anus but he said he found there to be more complications post surgery when the anus is sewn closed..hmm.  Guess you just have to trust your surgeon.  He is head of colorectal surgery at Univ of PA hospital and has over thirty years experience.

They leave an opening, and pack it until it heals from the inside out. I had an abscess a week after I got home from surgery, so a lot of my stitches got cut open pretty early .... it leaks a bit from the stitches too.

Yikes, not fun..... mine was not that bad. It hurt a little in the hospital when they did the dressing changes, but it wasn't packed that tight, and the packing didn't hurt when the nurses did it at home. I had to do that for longer, it was over a month, and very annoying to have someone coming every day for 10 minutes.... probably had 15 different nurses, was like, "Hi, here's my butt....." Humbling....

I think preventing fistula must be more of a deal than just keeping the wound mostly open....