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Posted 5/27/2011 4:04 PM (GMT 0)
I am so excited today! I finally got my appointment with the surgeon who will be doing my ileostomy. I go Monday morning.
I've been keeping a list of questions but am wondering if I might be missing something important to ask her. If anyone has anything they think I should ask let me know. The list is ever growing!
Posted 5/27/2011 4:46 PM (GMT 0)
Is the ileostomy going to be permament with no chance of a j-pouch in the future?

Reason I ask....and there are several schools of thought out there regarding this....will your butt area be left alone, or sewn up and rectum and anus removed?

My husband was hoping for the j-pouch and it couldn't happen. His surgeon performed the above at the same time of the ileostomy. After healing successfully he has had no problems. His surgeon chooses this method so there are no discharge issues and elminates the chance of rectal cancer down the road.

I am not saying that this is THE way to go. It is what his surgeon does and how he feels about it and my husband was on board with it.
Posted 5/27/2011 5:09 PM (GMT 0)
That's exactly the route I want to go. I don't want to chance going back to similar problems I'm having now. I've made my decision hard as it was but I want a permanent ileo. Not sure if my surgeon will offer the J pouch or not probably but I don't want it anyway. I'm ready to be removed and sewn shut. My goal is to get my life back not to poop normal! I'm also wondering if she will do the surgery as one or in two parts, hoping for just the one! It's one of my many questions on the list.
This has been a long time coming and I'm ready mostly. Nervous to no end but I think that's to be expected.
Posted 5/27/2011 6:05 PM (GMT 0)
She is going to take out your colon, so I think the only question of a second part would be if you were going to leave in the anus and get it removed later. If you are going for a permanent ileo and want to be sewn shut, seems like you might as well have it done in one surgery -- that's what I did.

Another question would be about laparascopic surgery vs an open incision. I had mine laparasocopic and the abdominal wounds are very small and healed quickly. A lot of people with an abdominal incision have problems with it. However, the laparascopic surgeyr takes longer, so you're under anesthesia longer, and you need a surgeon who is good at it (well, that's true for any surgery, but not all good colorectal surgeons do laparoscopic surgeries).

Are you seeing a stoma nurse too? I'd ask about how that works, make sure you get measured first and find a good place. it's also helpful to see if the hospital has a support group or can connect you w/a way to meet someone in person who had the surgery before you go into it. Helps to be prepared that way.

Are you on any drugs like pred? I'd ask about that and how it affects healing.

I was very concerned about nerve damage, so asked about that...

I asked if I could have my colon to bury it or something.... no can do, but she did take a picture for me, which I thought was very helpful to have....

Ask about epidurals and pain management in general. You have to decide in advance if you want the epidural ... I had it, but they didn't put it in quite right, had to get it taken out early on (couldn't move one leg).

If you have any drug allergies, talk about them....

I like your line about getting your life back as a goal not pooping normally. Absolutely!

Congrats in this next step!
Posted 5/27/2011 6:20 PM (GMT 0)
Thank you bluegrass you pointed out a couple of things I hadn't put on my list. I'm not sure which type of surgery she'll want to do so I added the question of open incision vs laprascopic.
Not sure if I'll be seeing a stoma nurse either so that got added as well.
I had the questions about the current meds I'm on because I have no idea if she wants me to stay at such a high dose or what. I hate those steroids makes me feel like I'm not myself emotionally...
As for having it all done at once I had read that sometimes they do the ostomy and then later will remove the rectum and anus but I'm assuming that is a case where the person hasn't decided if they want to do a J pouch later on... I know I don't want that. While I'm under get it done!
I've talked to a couple people who have had it done and they've answered alot of my personal questions. Made me feel more comfortable with the whole idea. However the lady who came to talk to me, a family member, has a colostomy not an ileostomy. I know mine will drain constantly which I'm wondering how do you change the appliance if it's still going?
I wish I could see my colon too! I'm wondering just how gross it looks...
Posted 5/27/2011 7:25 PM (GMT 0)
Hubby was able to have it done all in one however he was off the prednisone for a real long time (3 yrs!) so that may have a bearing on one or two surgeries. Obviously one is better if you are entitled to that option but you have to go with what is going to be the best scenario for you.

We were very pleased to get the full in-depth pathology report later which confirmed no cancer and no chrons in his case. Would have liked to have seen how ugly that colon was as it sounds like it was really bad.
Posted 5/27/2011 8:52 PM (GMT 0)
you should have both done at the same time.  i don't see why they wouldn't they did both of mine at the same time. 

as for the pred they will try to lower the dose but still keep you in as good of health as possible, or thats what they should do.  its better to go in on low does pred than in really bad health.

you will see a stoma nurse, but probably not until the week of your surgery, your placement is one of the most important things.  so make sure when you go to that meeting that you wear your normal clothes so that it gets in a good spot.

Posted 5/28/2011 12:49 AM (GMT 0)
Thanks for all the tips and advice. I'm pretty sure everything will be done in one shot. I plan to go over my ginormous list with the boyfriend this weekend so we're somewhat prepared for Monday. It's funny I almost feel as if I'm removed from the situation watching someone else go through it... yet when the time comes to actually do it will I be so calm? Probably not lol probably be a huge baby!
Posted 5/28/2011 3:56 AM (GMT 0)
I think you will be calm. The nervewracking part is making the decision and the going back and forth on what to do, what not to do, when to do it etc.

Once my husband made the decision it was like a weight was lifted off his shoulders and his mind....mine too.

Of course while he was out of it and in surgery I was very nervous as is anybody waiting for a loved one's surgery to be over with.

Get all your questions answered so you are well informed. Good luck with the appt on Monday...enjoy the weekend.
Posted 5/28/2011 4:34 AM (GMT 0)
Wonderturd,

Your surgeon should be able to remove the rectum and anus at the same time as your ileostomy if you are sure don't want a J-pouch. That is what I had done. I remember being soooo worried before meeting my surgeon that he wouldn't want to do a permanent ileostomy because I was also a fine candidate for a j-pouch and was only 38 years old. Yet I knew I didn't want a J-pouch. I was incredibly glad in that initial consultation that he was supportive of whatever I wanted to do. He didn't try to sway me either way and said it was completely up to me, but that an permanent ileo would allow me to do everything I did before. My surgeon preferred to sew the anus shut and felt that it caused less complications, though I know there are different schools of thought on this. My anal incision healed wonderfully and I was so happy to not have to worry about the whole mucus discharge thing.

My colorectal surgeon is considered one of the best in my city (Denver), yet he doesn't prefer to do this type of surgery laparascopicly, so I had the traditional incision. I didn't really care either way though, so that didn't bother me. I did have issues with my abdominal incision healing, but all was resolved.

I had decided to go for the epidural as well as that is what my surgeon recommended. However, the anesthesiologist had trouble getting it started right before my surgery (something about me having lost too much weight and being too thin to get it placed appropriately). They ended up bailing on it and just doing the normal pain management. Of course, I remember none of this:)

The day of surgery, I was nervous, but a sense of peace also came over me. I let myself surrender to the experience and put all my trust in the whole medical crew that was caring for me. They ended up being amazing!

Best wishes on Monday. You will do great!
Posted 5/28/2011 5:23 AM (GMT 0)
Oh yeah- one more thing. A few days before my surgery, one of my GI nurses reminded me to tell my surgeon not to give me a flush stoma as they can pump stool under the wafer. So, ten minutes before being wheeled to the operating room, I was meeting with my surgeon going over final questions and I asked him to make sure to give me a stoma that stuck out a bit. It felt really funny to ask him this since he was the expert, but I didn't want to take any chances. He laughed and said not to worry, that he would definitely not give me a flush stoma and would create one with a good length. And he did! My stoma is awesome. It is about 1.25 inches when it stands up at its tallest and points down towards the bottom of the bag. I would definitely ask your surgeon about this at your consultation.

And to echo what everyone else says... stoma location is key. Get a good spot!
Posted 5/28/2011 7:39 AM (GMT 0)
hi - i hope every thing goes great on Monday - when i had my end ileo i also had rectum removed & anus sewn up in one op - i didnt want a protracted set of ops - i wanted it done & dusted in one go - it was done laparoscopically - it worked well for me - i dont know if it has come up before but just in case, it is worth mentioning that the bum wound does sometime take a while longer than other incisions to heal & this is probably worth asking questions about too - mine took about 8 weeks to really settle down but for some it takes longer - its not a big issue & i wouldnt be put off by it but i think its worth a chat with the surgeon & maybe a wound /dressings nurse

best of luck , cheers
Posted 5/28/2011 1:25 PM (GMT 0)

WonderTurd -

Please please please don't rush into making your decision and really really think it through properly. I was so desperate to get something done to stop what I was going through with the disease and thought I would be totally ok with it the whole way through. When I was sat there in the appt - which i assume is the same as you are having monday, my surgeon and consultant kept saying to me 'are you absolutely sure this is what you want? Are you completely and fully aware of the consequences? etc. When the decision was made for a temp loop ileostomy with an internal pouch, and 2nd revision surgery planned a few months later I went home sooo happy.But over the next few days it began to sink in but I decided I would be fine and just didn't think about it too much. 

Of course the surgery came round so quick and I realised I hadn't let myself prepare for it properly.  Once I'd had the surgery it was a very different situation to what I had felt during that appointment. I became much more aware of just how difficult it all can be to manage. I wouldn't change what I have had done but I most certainly wish I had prepared myself better by asking the surgeons so many more questions than I did. I am 7 weeks post surgery now, and  (bearing in mind I seem to have had nothing but problems - I spent nearly the whole of the first month in hospital.) I still cannot believe how much harder it has been emotionally and physically than I thought - for me mainly it has been issues with the stoma/bag.

One other thing that I also didn't think to ask is whether they are doing key hole or an insicion. I came round from the surgery with an ugly, although very neat, 6 inch scar running from 2 inches above my belly button all the way down to my pubic bone area.

I don't say all this to scare you, and of course none of us know how we are going to feel until we have actually had the op. I just want to say to you please think it through thoroughly, ask everything you think of, and if possible don't rush your decision..it is life changing and is an emotional journey - perhaps more than you realise at this point.  :)

Posted 5/28/2011 1:51 PM (GMT 0)
Qwerty- you are right that surgery is hard. Though I could tell I had made a good decision because my UC pain and other issues were gone and had no regrets, I was still pretty miserable right after surgery with several return trips to the hospital. I really made a huge leap in the ability to manage my ostomy between the 8 and 10 week mark, and then I started to feel really well again otherwise between 4 and 5 months. Before those milestones, there were a few short moments I wondered if I made the right decision. My husband kept reminding me of how horrible I was doing with my UC and medication side effects before surgery. He was right! Now I feel so amazing. Hang in there.
Posted 5/28/2011 3:17 PM (GMT 0)

Blueheron said...
Qwerty- you are right that surgery is hard. Though I could tell I had made a good decision because my UC pain and other issues were gone and had no regrets, I was still pretty miserable right after surgery with several return trips to the hospital. I really made a huge leap in the ability to manage my ostomy between the 8 and 10 week mark, and then I started to feel really well again otherwise between 4 and 5 months. Before those milestones, there were a few short moments I wondered if I made the right decision. My husband kept reminding me of how horrible I was doing with my UC and medication side effects before surgery. He was right! Now I feel so amazing. Hang in there.

Thanks for that Blueheron. Its good to hear of someone else who has been a little slower in recovery and having return trips to hospital. I've got the impression from things I've been told that you should notice a significant difference in how you feel about 3 weeks post surgery. And I most certainly didn't. Its a little encouraging it took you between 4/5 months to start to feel really well again - I think thats what will happen with me. I am getting there, just slowly! And I have been so the same as you about sometimes questioning whether you did the right thing - my friends, like your husband, say ' look at the bigger picture and compare how you were with the illness before and how much better you will be eventually after both surgeries!'

All the best! :)

Posted 5/28/2011 4:42 PM (GMT 0)
My sister had unexpected surgery 2 weeks before my husband. We visited with her on our return trip home which was 11 days after his surgery and although she was so pleased to see him/us she was so surprised that he was doing so well in comparison to her.

We all heal differently and her situation was an emergency and on high dose of prednisone so of course that impacted her. She is doing well now but it does take time.

And yes the most discomfort hubby had was the rear end of things healing. His right shoulder was very sore for about a week. You definitely want to sit on soft pillows or the blow up waffle cushion (NOT A DONUT cushion). His ostomy nurse gave him a waffle cushion which was added to the hospital bill and paid for by ins. if you don't get one beforehand. Finding the right position when laying and sitting was a bit of a challenge but you do notice every day slight improvement which is super encouraging considering there was no improvement suffering with the UC which is the reason for having surgery.

We needed those pillows for the 3 hr drive home which really made it very bearable for him. Need a small soft pillow for the seat belt area too.
Posted 5/28/2011 6:29 PM (GMT 0)
wonderturd, the mention of shoulder pain in the post above has reminded me of something which may not have been mentioned to you before - i had laproscopic surgery & apparently in order that the surgeons can work, gas is used to expand the abdominal space, i am told that this gas also puts pressure on the diaphram which sits just between the chest cavity & the intestinal area, this pressure on the diaphram gives rise to transferred pain which shows up in the shoulders, i had this strong dull persistent pain in my shoulders for about 24 hours about 2 days after the op which i was not expecting - it had not been mentioned to me - so just in case you too have this, its not a biggie but so that you dont get alarmed

i also remenber the car trip home & the 3 or 4 trips back to the dressings clinic, every pothole, speed ramp & bump was not too pleasant bum wise - i found the 6 week mark post op was the real start of feeling properly human again - in the 1st few days after surgery 6 weeks seems like seems so far away but happiy time marches on at the same rate dispite our discomfort & healing does happen

cheers & best best best wishes
Posted 5/29/2011 2:19 AM (GMT 0)
i rode in the car for the first 2 months, with my arms holding me up, so my butt didn't touch the seat, lol.

I think we all have had moments that were like, OMG what the heck did i do? When i woke up from surgery, my first thought was, wow i'm all better, my second was, what the heck did i do, my third was, this *(&(&(O hurts!!! then i got some meds and had no thoughts, lol.
But when i first saw my stoma (i'm going to warn you of this cause noone warned me) and my bag and output, i freaked, like big time. In the hospital, you will have a clear bag,and the output is this color that i can't even describe and the smell is the most horrible thing, ever!!! I'm not saying that to scare you, only to prepare you. Once you start eating, probably day two, it will start to smell less horrible and change in color, then when you get home you can use bags that aren't see though.
After the ET told me it wouldnt be like that forever i was ok.
I had another OMG moment the first time i took a shower alone, i got out, i was so skinny, and i had track marks on my arms from the iv's, my bag was hanging there, i had that huge scar and i looked like a heroin addict. i cried and cried, and then i saw (and this is corny) the crayon on my shower walls, that my son drew there while he waited for me in the bathroom for hours when i was sick, and i thought, well this is just stupid, looking funny right now is worth it! And during the four or five times since surgery (over 4 years ago) that i have gotten a little upset, i just look at the crayon, and i'm good. Almost everyday though, there is something that makes me think, i am so glad i had surgery, today, it was eating cheddar cheese chips, and yes thats a small thing, but it was important to me.
Anyway, i got rambly, lol.
I went the long way around to say that it's ok if you are upset after surgery or if you think WTH everyonce in a while, or if you get upset the first time you see yourself naked, or if you end up back in the hospital a few times. It's worth it in the end, it's just hard to get used to, it's a big change.
Posted 5/29/2011 6:16 PM (GMT 0)
Thank you everyone! I'm glad to know that I'm feeling normalish about it all. I know I'm going to have some OMG moments after but then someone will remind what I'm like now and realise yes indeed I made the right choice. It's all about adapting I think. I had a bad night last night was up in the bathroom most of it so just remind myself I won't have to do that all the time anymore!
I'm glad you all mentioned things you experienced so if it happens to me I'm not super freaked out. You've given me lots of pointers and great advice. I've added a few more things to the list and I think I'm fairly prepared for tomorrow morning. I"m hoping I like my surgeon, we only have the one so I'm sort of stuck with her even if I don't... Either way I guess I find out tomorrow.
I'm 100% certain this is the route for me, I've spent the last nine years feeling like junk missing out on life and over the course of the last couple years I've given it thought off and on but things for the most part weren't too bad until this last flare and I just simply had enough. Why suffer and have all those nasty side effects from pills when I dont' have to? I'm on a high dose of prednisone right now and it's making me so emotionally challenged it isn't funny. It's a horrible drug yet wonderful when it works however this time it isnt' helping... so it was time to decide finally. I know there will be days when I think to myself why did I do this but then I'll go do something I couldn't do now and remember why!
Again thanks for all the support and will post how things go tomorrow at some point!
Hope you all had a great weekend!
Posted 5/30/2011 4:58 AM (GMT 0)
Good luck to you Wonder....I see the surgeon end of June so I am preparing my list of questions as well. I feel almost like a fraud for having the surgery because I have never been hospitalized for my flares, but my doctor said we are running out of options to control them. I'm just ready to get my life back. Just sick and tired of being sick and tired, ya know? Again, wishing you the best and prayers coming your way.

Angela
Posted 6/2/2011 4:46 PM (GMT 0)
Well I had my appointment with the surgeon and she is great! She took the time to answer all of my questions and explained everything in plain english. She's hoping to get me in during July. She warned me that the worst part would be the bum wound. And that it may take me a little longer to heal where I'm steroid dependent and will still be on some sort of dose when I have the surgery. I think it's going to be an interesting trip. However she's going to get rid of a few problems at once so that's good. She said she doesn't have too many people, especially females, who want to have the permanent ileo done right off the bat. The only thing that concerned me was that after having everything removed it might be harder to become pregnant and at the same time I'm not even sure I want kids so... She gave me lots of good information.
It really hit me Monday night what I'm about to do and that it's permanent. I was changing and looked at myself in the mirror and had a moment of OMG this is as good as it gets... and I'm so sick it isn't that good lol
I'm going to be quite self conscious at first I think. I have a hernia too so I'm going to have a scar from above my belly button down to my area. Lots of staples! I also live on my own with a house to pay for so that's going to be a challenge as well. My boyfriend says he's going to come stay with me for the first little bit but he works such weird hours that while he's actually here I'll be sleeping for sure. But I'll manage I will just have to remember that I can't do everything!
Angela, Don't feel bad at all. I've only ever been hospitalized once four years ago. I just decided this time when I flared that enough was enough. The medications etc just aren't cutting it anymore. It's time to make a decision as to whether I wanted to stay in that boat and miss my life or go out and get one... so I've opted to make it happen.
Posted 6/2/2011 6:07 PM (GMT 0)
So happy to hear Wonder that you had such a good visit with the Dr.

Yes your healing will take longer due to the prednisone but to know there is a light at the end of that very dark tunnel you have been in will help you. And when you are up to it - post here for any questions, reassurances or whatever you might need.

Will you have the opportunity with your insurance to have some nursing after care when you are home to help initially since it will be so new and you are kind of "all thumbs" and a tad nervous in the beginning? We had a nurse up in Jacksonville for 2 visits as we stayed near the hospital for 4 days after discharge and she was awesome. The 9 visits we had here locally at our home were OK. Very nice nurses but I think we were even more informed due to the great assistance of others on this forum and the UOAA forum. They observed more than assisted which is kind of ok as we needed to become self-sufficient I know. But it was important for them to be able to see how the incision and ostomy were healing so it isn't like their services were not useful altogether. And I guess we demonstated that we had a fairly good handle on things too.
Posted 6/7/2011 12:43 PM (GMT 0)
I try to keep focusing on the end result when I think about it.
Where I am my ET nurse will come to see me every so often after I get home at first. Also I checked into my insurance through work and they pay for my supplies 100%, I have to pay upfront and then they reimburse me so that will be a HUGE help.
I'm starting to think about the things I'll be able to do again, just simple stuff that right now is hard because I'm glued to the bathroom pretty much. Now to be patient and wait for an appointment for the big day. I'm supposed to call the ET Nurse today since I haven't heard from her and the surgeon said if I didn't hear by the end of last week to give her a call myself. I think it's pretty cool that they give me a bag to wear to make sure the stoma is going to be placed in the right spot! Give me a chance to get an idea of what it's like to have one attached to me as well.
It's nice to know things are finally actually going to happen :)
Posted 6/7/2011 6:41 PM (GMT 0)
I think having a pouch pre-trial is a great idea. Fortunately my husband's stoma placement is just fine but it is still a good idea to have this opportunity before surgery.
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