Still in hospital

So sorry for all you have been through. Sorry I have no experience w setons.
Sending you healing thoughts and hope you get better soon :/

HB,
I don't have experience with setons, but having had fistulas I know that my hernia surgeon is doing it a certain way to attempt to avoid my body will react to the foreign object (mesh) and create a fistula. I wonder if this is what is happening to you with the seton? Further inflaming it, making it worse.

UB,

Are your surgeons and GI docs coming in to visit?

They withheld my Remicade while I was in the hospital because they thought there might be a chance I would need surgery.

Clo

UB,

Oh gosh.....I am soooooo sorry you are going thru this.

What is wrong with people? I think everyday people are just ignorant. They see the commercials and think people with Crohns just go to the bathroom too many times a day. They don't know about all the extra little perks we get along with those wonderful bathroom breaks. The people in the medical field though......

Ignorance occurs when someone has not been exposed to something and they have not had the opportunity to learn or gain knowledge from it. Stupidity occurs when you have had the opportunity to learn but have decided not to. When I was in the hospital I had some stupid nurses. ...and there were times when they just could not do anymore.

One time when I was in the hospital and I could not get any answers I actually called my GI's office (previous GI not one I have now) to see when they were coming. I made a nuisance out of myself I am sure. The nurses would not or could not give me any info so I just cut them out of the loop. Of course it ticked off the doctor and probably some of the nurses but after that day they made sure I knew what they knew. But remember to be nice to the nurses they are usually just the messenger....and they have the power to give you pain meds 10 or 15 minutes earlier....Lol...
Honey will draw more bees than vinegar... My friend is a RN and she tells me stories about rules and regulations she is not allowed to break or she gets reprimanded.Viscous cycle.

I thought Canada had exceptional health care???? There must be a reason. Maybe they need your immune system to be stronger. Do you have access to your blood lab results? Down here in the last 3 hospitals I have been in they have patient portals so you can go in and read your labs. I didn't know until one nurse told me and showed me how to access...

Hang in there. I (and allyour other online friends) am checking on you and just want you to get better.

Clo

I think Lab is right. I think it is the setons. ....

Post Edited (clo2014) : 3/31/2017 3:50:52 AM (GMT-6)

Thank you Monte. It's most appreciated. This has been going on since Aug when I switched from UC to fistulating CD.

Clo- agreed about nurses. They run the show! I wrote my list of questions for the doc. He just came. While I'm talking he's rushing out the door. He quickly said Humira has been withheld because of the infection (latest I & D of abscess). He examined the area & said it looked good. (That's what all the boys say when they look at my ass!! JK ). As far as the rectal pain & setons he'll discuss with head surgeon who will come see me today. I haven't drained from the setons in 2 weeks (placed Mar 8).

No discharge in sight but I'd like to try a pass for Sunday. I miss my dog terribly.

Hi UB.

Your hospital experience sounds much like my ones - particularly the first one I had. Was new to staying in hospital and the whole experience (carried out over two weeks in total - I was discharged but back in again a few days later) was utterly disorientating.

Clo is right about being nice to the nurses. For the most part, they are doing a pretty horrendous job and aren't actually treated any better than the patients. There was one young nurse in there who was waiting on a MRI scan for a bad back, but in the meantime was still doing all the backbreaking work that nurses do. I liked her. She moaned quite a lot (like me), but also had a dry sense of humour (hopefully like me - well I try) and wanted to work with dementia patients. She seemed to be getting no support from her superiors whatsoever. I think she would have made a fantastic nurse for old people, because she would have cared. She once sat with me for 10 minutes and explained why I was still having so much pain from my op - I was in agony most of the time, despite the pain meds.

So yeah, I'm usually pretty pleasant with the nurses and other staff. That said, it does pay to occasionally lose your temper, if you really are not getting anywhere and everyone seems to be ignoring you. Righteous anger, in my case at any rate, makes me a far better speaker! I personally can't pretend though, so it has to be real anger that I feel. I think you are entitled to feel genuine anger at your situation. During one stay I lost my temper at the junior doctor, after days of being ignored and not being given any info. I told him there was no point in my being there and that I might as well be given some prednisolone and sent home rather than continuing to take up a bed that somebody else could use. Well, that really worked! Worked so well in fact I felt guilty at making the junior doc feel so bad. But he came to seem me every day after that, made sure I was okay, and told me what he knew.

Apologies for yet another long post but hopefully there are some suggestions which can help you here. Every hospital is different, so I can't give you exact advice: only general advice which I hope can help.

Hope you can see your dog soon, UB.

This is a difficult time for you and I am so so sorry you are going thru this. I hope that you feel all the love and strength that all of us are sending your way.

I am praying for you

Hang in there....

Clo

Post Edited (clo2014) : 4/5/2017 4:35:53 PM (GMT-6)

It looks like they're talking about a diversion. I can't believe it's come to this. MRI shows new fistulas & small pockets of pus that they may not be able to surgically drain. Humira healed my mucosal lining but not fistulas. Is it worth trying Remi? I was on it for UC 8 yrs ago with remission lasting only a short time.

I'm scared of the bag but am exhausted. I can't see myself going for another i & D or a 3rd seton.

What questions do you think I should ask?
I'd rather a colectomy.

I am sorry that you're still dealing with all this. I feel like if I were in your shoes, I'd prefer the illeostomy, but I am really curious how you will feel if you do a temp... will you love it or hate it? I hope it doesn't come to that, but I know in your shoes, I personally would welcome it. I had it temp and it was better than living with my UC.

I would absolutely have the stoma nurse mark where it should be and then do a test drive with a bag before surgery.

Just want to second this! Even if it's temporary, you could have it for a few months or years even. It's very important to get the best fit for a stoma that you can, as if it ends up too near a crease or right underneath your waistband, it could cause issues. My stoma nurse really took her time in measuring me up for a stoma and it paid off.

One more thing: if you have an ileostomy, make sure the surgeon understands the important of creating a spout, i.e. you want it to stick out by about an inch. 'Flush' (i.e. level with the skin) ileostomies are a nightmare to look after, as the output leaks out under the wafer and causes endless leaks, breakdown of skin, etc. Colostomies lie flatter than ileostomies and the output is much more solid, so they don't really need to be spouted.

UB,

Just checking on you. Hoping you are feeling better and keeping the depression at bay.

Sending healing thoughts and prayers your way.

When you feel like it please let me know how you are.

Clo

I am so sorry to hear what you are going through. I cannot even imagine what you are feeling, thinking etc. Sending thoughts, prayers and hugs your way. I hope it gets better soon and you are able to start the healing process! 🌈