Surgery questions.....

[mussen]

surgery questions.....

Hiya,
So after battling with IBD for 8 1/2 plus years, it's finally come time for sugery. I'm looking at having a colectomy (not 100% sure on all the details yet..) so not sure if bag will be temp or not.
Doc's still can't decide if its crohn's or colitis after initially telling me it was crohns when first diagnosed, they now seem to be leaning towards U.C which means more of a chance that the bag would probably be temporary!?
Well anyway I was just wondering if anyone had any good advice or helpful experiences to keep me positive.....
What do you wish someone had told you before you had your surgery that you didn't know about...(any suprises)....?
.......What was the most helpful thing you were told.....?....

Thanks

M

p.s no dates set yet, have appt in 2weeks to see G.I.

 

[Outpatient]

I wish someone would have told me that it would turn out OK. I did a lot of worrying. Staying up nights thinking worrying about the surgery. Also I wish someone would have told me more the bag and wafer it self. problems to expect (leaking, bad seal, odor etc.) and how to deal with them. If any of this is helpful please let me know and I can elaborate. Good luck at you appoint.

 

[mussen]

Thanks for the feedback, yes it's helpful....
Like a lot of people I worry about the unknown more than anything so the more info I have the easier I find it to cope with etc.
With the problems you encountered with the bag, was it just a matter of time before you were able to work through them and are you doing o.k now? How long ago did you have surgery?
Thanks
M

 

[CDDad]

The most helpful thing I was told (on here) was that things would get better - much better. After surgery, I was so down and everything hurt. Well, they were right. I'm 9 months post surgery and it is just a distant memory and I'm feeling so great now.

The bag takes time to master. I would just say to read all you can about it, here and at the UOAA forum. The learning curve is steep, with different wafers, bags, barrier rings, powders, wipes, etc. Body acceptance also takes time - the change in body function is alot to deal with. I kept reading that after a while I would not even think about my bag all the time. It seemed hard for me to believe because that is all I could think about. But, I realized that it finally happened for me too.

 

[spingirl]

My crohns/UC is in my colon. I was the opposite of you...I was always told UC and now recently they think Crohns. The best advice I got was to get a second GI and surgical opinion - by my wonderful PCP. I just can't believe how different their opinions all were. I've been seeing my GI since 1985...I was shocked another doctor would tell me anytihng differently...and now he concurs with the 2nd GI. I tested negative for Crohns but they still think I have it. Why surgery now? Just curious what is going on that makes it time. Is medication not helping anymore? Do you have stricutres?

 

[mussen]

Thanks for all the helpful info so far.....
I had a GI for the first 6 or so years of this disease, we got on pretty well. I believe he told me it was crohns during the first massive flare I had. fortunatly (kinda) I got sick really quick and was hospitalised and treated within a couple of months of the first symptoms.........It's been a bit of a rollercoaster, I don't think I've got through more than 6-8 months without some kind of bad flare since.......I got a new GI just over a year ago, we get on great she is very thorough, she has a special interest in IBD (along with another GI that she works closely with) So I feel I am in safe hands.... unfortunatly she has gone on maternity leave for now!!BAD timing!!
I have tried a variety of meds but nothing work well or for long enough.....last year I was diagnosed with drug induced lupus from remicade....so all that family of drugs are out of the question. I was hospitalised July/Aug last year and tried cyclosporin as a last resort until the aza kicked in (had been on aza before and it worked ok for a while) Cyclosporin worked well but the aza hasn't. I was warned when I was in hospital that I would need surgery if things flared again so I just try to tell myself at least I got to enjoy the summer before things went bad again....(gota look for the positives!!)

M

 

[spingirl]

Rollercoaster is right! Well, I am a little behind you with the surgery...just now trying other meds since I was without a major flare for years and years...but I am heading in your direction...like all of us...and its a comfort to know that others with surgery have found it to be very liberating. I have a feeling you will be posting - post-op - that it was the right decisions and you should have done it years ago! I hope you keep us posted on your surgery details...if you can. Good luck.

 

[Christie]

Hi I wish someone would have told me that you can still go to the loo and empty yr bowels when I got the first urge I was terrified and held it for a few days!! Hope all goes well for you

 

[mussen]

Hi,
Ops sorry its been ages since I posted/updated anything.
I was hospitalised on 29th March, had subtotal colectomy (with ileostomy) 31st March.
Surgery went well, first day after sugery was great then things started to go a bit down hill. I developed post op ileus (digestive tract, stoped working properly) I was continually vomiting green stuff and had my first unpleasant encounter with a NG tube (Are they the worst things ever or am I just a big baby?) I had CT scan/xrays etc a week later things still hadn't improved so I had another G.A so they could go in again and check to see what was going on. They didn't really find anything. Anyways After three NG tubes (after a few days when things seemed to be improving and tube got taken out, hours later I would have to get another one) weird heart issues, some scary moments and TPN I was finally allowed to go home after a month in hospital. Over the next 10 days I spent two seperate nights in the local hospitals E.D before being transfered back to the hospital (over hour away) where my surgeons are. I was there for another week or so.

After all the dramas and stressful times I haven't regreted getting the surgery done at all. I'm coping with my stoma fine, and trying to be positive about my next lot of surgery.

Thanks

M

p.s after surgery they finally said they sure it is U/C.

 

[ameslouise]

Well the definite dx of UC is positive in that hopefully it means you will someday get a reversal right? Even if not, life with a bag is great, and I hope you are feeling good now.

And no, you are NOT being a baby. NG tubes are about the worst things ever!!

- Amy

 

[spingirl]

You are not a baby. You are one strong human being to go through what you have been through and to remain so positive. NG tubes...I've never had one but I fear one ever since I saw my father with his. He hated it and I don't blame him one bit.

God bless you and I hope you continue to improve and have a wonderful outcome.

 

[vonfunk]

I fought the NG tube after surgery. I was able to avoid it until they found the obstruction. The doctor cleared mine by shoving his fingers into my stoma and pushing them through the muscle.

And hooray for the UC DX. You are now basically "cured"; no colon, no problem.

 

[poolside]

currently enjoying (NOT) day 4 on the NG tube. Worse thing ever. I have postop ileus as well. Hoping for only a couple more days, ouput is slowing and bowels are waking up.

 

[Terriernut]

I can happily report I've not had an NG tube yet, and my heart goes out to you Poolside, and all of you who have had to have an NG tube. Fingers and toes crossed Poolside that you will be back on your feet and well again.

 

[Misty-Eyed]

I think I may be the only person in the world who misses my ng tube! It was great. If I didn't feel like eating anything then I could just pump some feed into me. Didn't want to taste that yucky medicine? Shove it down the tube! Plus I quite liked the cold sensation down the back of my throat as it all went down. I'm weird, I know.

 

[mussen]

wow poolside, thinking of you.
hope you get rid of the nasty tube soon an recover fast.

M