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J-Pouch Surgery in November- really scared

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Ulcerative Colitis
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Posted 8/22/2012 1:11 AM (GMT 0)
I had my CC surgery consult earlier this week. As mentioned, the surgeons are very busy so have your questions ready! I found that the surgeon wanted to answer the surgery specific questions. The nurse can also answer tons of questions (diet, what kind of "tubes" you will be waking up with, etc.) - the ostomy nurse can also answer tons of questions. The appointment times are a bit flexible. I was there on time but the staff was delayed. They are ALL very busy. I don't mind because they are the best..and you never know what emergency they are having to deal with. They were very good about letting me know about the delays though. Be prepared and definitely book the last possible flight out. Just a heads up if bathrooms are a concern. There are bathrooms right by the exam rooms. There is one bathroom near the GI/CR waiting area...it has three stalls. And check for toilet paper!! One of the stalls in the general area had no tp for about the four hours I was in that area.

The staff actually gives you alot of literature. My surgery is scheduled, so I received an entire BINDER of information for the surgery. It includes some general CC information, guest information, surgery prep info, surgery info, information about the actual post-surgery stay, diet...you name it. Most of my questions were actually answered with information from the binder. You are supposed to take the binder with you for your actual hospital stay. There's a chart where you enter your walking goals for post-op days and a section for post hospital instructions. I also received a book with info concerning the jpouch (very details, lots of pictures) and another book with info concerning the ostomy. It includes cleaning and care instructions and common concerns (smell, intimacy, etc.). In addition, I received info regarding ordering ostomy supplies and how to find support groups. I haven't even read over everything yet! I'm not sure how much these items cross surgeons, but hopefully they give you something similar.

Everyone is nice and they really do take care of you!
Posted 8/22/2012 1:37 AM (GMT 0)
Summerstorm: Ok, I'm misunderstanding a few things now. After surgery 1 (with the ileostomy), it will start with liquid diet and then become low residue diet only... But after surgery 2 (take down), it will start with liquid diet and then move to low residue and then I will be able to eventually slowly add regular foods.. Right??
PS: I love the part of your signature - I have gone to find myself.... Makes me laugh!!

ddd45- THANK YOU FOR THE WORDS OF WISDOM about DR. STOCCHI... no one addressed that question. I was starting to worry no one had heard of him. I'm sorry to hear that you now have a permanent ileostomy if it wasn't your first choice. BUT, you seem perfectly satisfied and accepting with it and that is good. Thanks also for understanding my concerns about how to dress. You seem to dress like I do!! I've made note about the MIDI size bags and Coloplast Sensura site. My problem with the ileostomy bag is not that anyone may notice it, but .... I'm sorry to say this... I'm afraid I will be grossed out if it pulls and moves around while I'm doing my daily 'stuff'. I have a very queasy (sp?) stomach. I get nausious very easily. This is something I'm going to have to GET OVER QUICK!!
Yes, others have told me the same thing about staying a bit longer.
LOL- coffee!!?? What that?? LOL- I haven't had coffee in a long time. It would set me off for hours!! Thank you so much for the offer. I may take you up on it. I'm sort of worried. My consult is at 9:00 and the latest flight out I could get was at 5:00ish. I was told he may want tests or imaging done after the consult. I'm sort of worried that he will want testing done that I won't be able to accomplish before I need to leave back to the airport... I will be in contact with you.
I actually just posted a question at jpouch.org because now I'm worried as to whether I'm really ready for surgery (physically that is). In all the stories I've read, these people (including probably you!!) have had it sooo much harder than I. My problems seem mediocre or not as urgent as compared to many others. Please read it and let me know what you think... It's in J-pouch forums - General Discussions- titled "Am I really ready for surgery". I really wnat this surgery but now I'm starting to worry if the surgeon is going to laugh at me. I really don't want to try Remicade. I will NOT do Remicade. What do you think?
Posted 8/22/2012 2:19 AM (GMT 0)
Hi Cassie - I'm not the original one you addressed your post to, but I just checked out jpouch.org. I don't think you need to stress about not trying everything and about not being "bad enough." I'm actually doing "relatively" well right now UC-wise, aside from all of the drug induced issues (which makes me not so well but anyway...). I also only have left sided colitis. I actually said to my surgeon that my digestive issues have been pretty well behaved the past couple of weeks. I didn't want him to go in and think "why is this person having surgery!" They are concerned with how your disease has been treating you over the long term - not how you are at that moment. And I echo the thoughts of others on the jpouch board...much better to go in healthy.

The staff seem to be interested in improving quality of life overall. Pain, urgency, and accidents are signs of someone not being able to live their life. You should not turn the toilet water red on a regular basis. Constantly having to adapt is a sign that someone is not able to live a normal life. Plus, they commented that those of us who suffer from the disease tend to "adapt" to what we have to deal with. If you took a normal person and suddenly dropped them into your lifestyle, they would probably think the bathroom problems were HORRENDOUS - but we just learn to deal with them over time. I also had the same concerns that I wasn't "bad enough" but when I think about all the things that I do to deal with my UC, well, it puts things into perspective. You probably have lots of adaptations as well...so don't stress about it!

Also, don't compare yourself to those who might be "worse off." Some people delay and delay surgery, trying every drug and treatment out there. That's what they want to do and what they are comfortable with. Some GI's are resistant to recommend surgery. Then there are others who don't want to use certain drugs and surgery seems like the better option and turn to surgery sooner. It's a personal choice.
Posted 10/5/2012 11:51 PM (GMT 0)
Hi Cassie,

I understand that this is scary but I went thru the surgery and am feeling great. I will try to answer your questions from my experiences. I am 53 year old female 5'6" 125 lbs. I lost some weight but nothing substantial. It would be a good idea to purchase undergarments and take them with you to the hospital. The company I used was ostomysecrets.com. They were very nice and having these garments flattens things out and makes it more comfortable. As far as clothes I just wore low rise yoga pants and lose fitting tops...easy to cover things. I had my second surgery after 4 1/2 months. Things began to settle out at about 3 months for me so I was able to go sooner than the 6 months they originally thought. I had 3 months to wait for final takedown and I'm now about 2 months post takedown. While it is a long difficult journey you will be ok. I was totally scared ice things would work ok and everything is just fine. I have to take lomodal and Imodium before I eat but for instance today I have only had 2 bms. I sleep thru the night and have had no accidents. While bms will be loose, they are totally controllable. I did have burning but it was only initially and controlled with creams. While you will have to be careful about what you eat while you have the ostomy, eating things that help to limit runny bms for me were white rice, cream of shear and very ripe bananas. I ate this a lot and it allowed me to drink fluids to prevent dehydration. Within a couple of weeks after my final surgery I could eat anything I wanted and I eat salads and everything with no problem. It looks like you have a good med facility it will take awhile but things worked out great and now I don't have to worry about it. Let me know if you have other questions take care
Posted 10/6/2012 12:47 AM (GMT 0)
Ddd45- did you have a jpouch done at the CC? And now you have switched to a perm ileo? The jpouch failed? i am glad that option is there if worse comes to worst but am sorry you had to give up on your jpouch... What happened? Or did you go to CC to correct surgical errors elsewhere? Best wishes and congrats on being dne with UC.
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