J-Pouch Surgery in November- really scared

Anyone at the Cleveland Clinic will be fine.

Why on earth are you waiting until November? I cannot imagine having to think about surgery for several months!

The time between steps is surgeon preference, some do within weeks (mine 6 weeks) some wait months. It's their prerogative.

Sue

I am having my procedure done at the Cleveland Clinic on August 30th. I'll probably still be in the hospital when you are there...let me know if you want to stop by!

I am personally having to wait several months between surgeries. I'm likely a 3-step. The reasons for me 1) been on/off steroids for a year - that affects healing 2) Remicade recently 3) need to lose weight (no, I don't know how I have a digestive disease, go to the bathroom constantly, and gained so much weight) 4) Surgeon preference

I am scared as well but I am also sick . I just spent 20 minutes in the bathroom with diarrhea, rocking myself, gripping the edge of the sink, and trying not to pass out from pain. I waited a month and a half for my consult because I hadn't come to terms with having surgery when I scheduled the consult. But now I that I've come to terms with it, I can't wait to get my colon out. I'm still scared, but Cleveland Clinic is a world class center...literally. Remember, it's ok to be scared. It's ok to cry. Unless they give me drugs, I will probably be bawling all the way down the hallway!

As for your weight...you are definitely not in an unusual situation for a UC patient. Since you are 5' feet tall, 105lbs probably still hits the "healthy" weight for BMI charts? People having their colon removed for UC tend to be sick - underweight, anemic, and a million other potential problems. Bring up your concern during your appointment...or if you want call them before your appointment you can bring up your concern with a nurse. He/she will be able to tell you how they deal with people in your situation.

The underwear I have heard of are called Flexies (saw it on a blog) and Ostomy Secrets maybe? I think I heard Flexies compared to spanx. For your ostomy specific quesitons, I would check out the healing well ostomy board. There's also another forum called jpouch.org that also has alot of information. Remember that the people posting on that forum tend to be the ones that are having problems. Those that are doing well are out living their lives!

ssarow- Yes, j-pouch.org was a fantastic site. It helped my mother to better understand the surgery as well. I've been surfing through their forums too. I'm finding the forums on this site are very similar. You get the good news and yet you get the bad news too.  

subear- I'm so glad to hear that everyone thinks so highly of Cleveland Clinic. I am going on vacation in October. We booked our flight and hotel way back in January. Back then, I didn't know that the various enemas, and drugs were all going to fail. My GI doc just prescribed prednisone again. She seems to think that it will get me through my vacation at least. It's really weird, but Prednisone doesn't totally control all UC symptoms but it does help control the urgency to the point where I don't usually have any 'accidents' if you know what I mean. It sort of firms things up just enough. I just hope I have that sort of luck again.  WOW- I just read that you had your 2nd surgery in 6 weeks!! PLEASE PLEASE PLEASE let this be my case!!!! Did you have ANY problems at all? After all I've read, it seems like people have more problems crop up after the takedown surgery.

ByeByeUC- I've not read where anyone regrets the surgery.. I can say that. I think the scariest thing is just not knowing how your surgery will turn out. Even people who have had really a tough time with BOTH surgeries. Thanks for the pep-talk!!

ActiveUCer- Unreal! You will probably still be there... I'll will let you know. I called the surgeon's office to find out how long the consult meeting will take so I could figure out which flight to catch to get home but she told me 'I can't imagine it taking over an hour' but then she told me to schedule the latest flight of the day out of town just to be safe..??  My meeting is first thing in the a.m. the flight out of town could be at 8:30 at night..??  Anyway, as soon as I figure out the schedule, I will let you know!!!

I'm sorry you are so sick though, the 20 minute 'routine' is a normal occurrence for me too. Once my bowel starts to spasm, it keeps me in there forever. My co-workers have gotten used to my lengthy trips to the ladies room. Quite embarrassing for me. My doctor gave me a script that controls the pain from the spasms and actually, it seems to have an effect on my frequency. For instance, before the pain med, I would have a 20 minute 'attack' sometime 3 times a day once I had a bad attack as that. But now I take the pain med (I have to find the name of it) and I take it after I have the first attack and it calms my colon down sort of. Then I don't usually have anymore attacks that day. Hard to explain. I'm glad you are getting the surgery done. I sort of think I am having it just in time because if I wait any longer, I'm going to start getting sicker and less healthy.

FLEXIES! That was it. Thank you... I just think if I can hold it in place better, I would feel better about it. I don't want it moving all around. Of course, I'll ask the doctor about it as well. I agree, many people who are posting are the ones that are having problems and they are trying to get answers to relieve their minds!!

Disneynut66!!!!! Yes, I scheduled the consultation and confirmed that he could do the surgery in early November. Thanks for the hint about staying a few extra days after surgery. I will consider this. Money IS an issue though. So I will play it by ear. I won't be able to schedule the flight home until after surgery anyway, so I will have time to decide.

Yes, the Intercontinental Suites looks like it will work. My boyfriend didn't like the idea of the Guesthouse (don't ask me how he knew, maybe it was the price that made him think it might not be real nice).. who knows.

Do you think a taxi will be real costly to get from the airport to the Clinic/hotel?? I thought it was only about 25 minutes away. The nurse today told me it was a 45 minute drive...???  She wasn't real helpful today. She couldn't even tell me how long to set aside for the consult.

I've never heard of a 'belly band' but I'm going to check this out!! I just think I'm going to have an issue (mentally) with it moving around and just thinking of it possibly getting pulled or yanked away from my skin.

I think I'm going to be like you and I will want to get it over with too. Thanks for re-explaining the 'urge' issue to me. You mentioned this before but its so hard to comprehend. I guess I will soon understand. Yes, I'm used to Metamucil now!! I can get used to using a cream to assist as well. If that's all I have to worry with, I'll be a happy camper.

PS: I cannot believe you went 13 hours!!!!!!! and it's only been a year since the take down... unbelievable. I'm so glad you are enjoying your new job ;o)  Our schools dont go back into session for about another 8 days or so.

Chat with you soon!

 

I'm glad to hear you're going to e healthy soon!
I have a JPouch and like everyone has said, it is definitely normal to be scared! It is a major decision and a major surgery! But in the end, you will love it!

1. I don't think I really lost weight after surgery. I was always kind of heavy and never really lost weight while sick. I went into surgery at 40mg of steroids. So when I came out, I still had weeks of steroids to wean off of. You will gain back any weight loss you do have, because you will finally be able to eat whatever you want (with in reason).

2. I didn't have a cover for my bag. It was tan, not see through, and I was fine with it hanging out. I was 17 when I had my surgery, so really I was just at school and my job at the library. I would wear longer shirts (which were/are in style). Most of the shirts went lower than the bag. If it didn't, I would tuck the end into my pants. I wasn't into form fitting clothing, so I never had the issue of trying to hide my ostomy.

3. The time between surgeries seems to be different by surgeon. My surgeon (not from Cleveland Clinic) told me I can have my surgery after 6 weeks as long as I passed the pouch test. I opted to wait 4 months just because I wanted to do it when I wouldn't miss anything at school. Between sophomore and junior year I missed 25 or so weeks of school. I just wanted to enjoy my senior year.

4. After the connection, it is definitely a touch and go thing. I had major butt burn because my butt wasn't used to being used. Consistency was more liquidy, but I always felt the urge to go. In the beginning I was still going around 15 times a day, BUT I didn't have the pain and blood from my UC. Over time, everything lessened. I was able to see what foods make what consistency and how much I will go. To help with butt burn, I highly recommend Cotonelle wipes. I feel they have the least "burn" feel when you wipe. I also used A&D ointment or something similar. Everyone is different, so butt burn can last a week or two or a month or two. It's all a matter of playing around with what foods work. I still have "issues" every once in a while, if I eat the wrong thing. I can now eat things that I couldn't before, but I find if I eat too much red sauce, I have butt burn.

To help with possible incontinence, you could always take an imodium. Or to bulk things up take Metamucil wafers. For the most part, I rarely use either. Only on really bad days. But there are some JPouchers that use those products daily. It's all a matter of playing around. Definitely check out J-pouch.org. They people on the forums are very helpful, and all know what you're feeling.
Good luck!
=)

1. I am 4'10" and the lowest weight I dropped to was 83 pounds. That was because I had three surgeries in a month. I looked like a skeleton, but gained it back quickly. Once you are healthy, you realize all the goodies you can eat that you couldn't eat before. Some people gain too much weight.

2. I wear a wrap from ostomysecrets.com on a daily basis. It provides support and keep the bag close to my body so I can wear tight fitting clothes.

3. It depends on the individual/surgeon. I'm waiting a full year in between steps 1 and 2, because I want to graduate college first.

4. I don't have a j-pouch yet, but the results are individual.

I understand the being scared and excited at the same time perfectly! I don't have a jpouch so I can't answer that food question. But for the first 6 weeks you will be on a low residue diet. But I would think a sandwich would be ok. Just small amounts to begin with.

No, I have had no problems since surgery. Every surgeon has their 'own' takedown schedule. My surgeon is on the fast track which pleased me. But honestly living with a temp ostomy for 3 mos., the average, is WAY better than living with UC!

Sue

Unless youve tried colon rest you haven't exhausted all your options.
Surgery is recommended way too much, just make sure you have n other options.

I can't answer any of the j-pouch questions because I have a permanent ileostomy. I can tell you that I was 5'2" and 105 lbs before I got sick. I lost 20 lbs between the 2 weeks I was in the hospital and the week after surgery. I was down to 85 lbs by the time I came home. Nine months later I weigh between 95 and 100 lbs, and I probably eat more now than I could when I was sick. I am am also way healthier than I ever was then.

Overall, I do not need to be on any special diet. I watch what I eat a bit - I don't overconsume raw fruits or vegetables as I did once have a blockage. I make smoothies and I have a juicer; between those two appliances I get a really good fill of produce. I am able to eat lettuce, tomatoes, bananas, strawberries, cucumbers, olives, and so many things without any isses. My only issue was with mango, but that could have been because it is stringy and I didn't chew as well as I should have.

I am really glad I had my revision surgery - it was done by one of the best surgeons in the country, in my opinion. My first surgery was done at a smaller hospital by a surgeon without the same amount of experience, but I didn't have a choice; I was sooooo sick. Because you are going to CC right off the bat, I'll bet things go a lot more smoothly for you!

Good Luck!

Casie130,
One of the best things about having surgery, aside from not being sick anymore of course , is being able to eat and enjoy food again! Oh and drink coffee. I don't know if you are a coffee lover but when I had UC I had to give it up because it would just run right thru me. Now I can drink it again and I didn't realize how much I missed it! :)

casie. I know Dr. Stochhi. He cared for me at CC hospital during my last month long stay when my surgeon, Dr. Remzi, was out of town here and there. He is a very knowledgable, experienced, kind - man. His bedside manner is a bit rough. But he does his job. Be sure to write down all of your questions BEFORE you meet him on Sept. 4. All the CC surgeons are so busy that sometimes it feels rushed in appointments with them.

I had a jpouch. Just had it removed earlier this year and now have a permanat ileostomy. Anyways - while you have an ostomy.. it really isn't that big of a deal to figure out how to dress. I am your age and frame size. I wear "boy short" type of underwear and just pull it up over the bag. I wear anything I want - jeans, leggings, skirts, tight dresses, tankinin swimsuits, yoga pants. No one knows I have an ileostomy unless I choose to tell them. As you are a petite woman you will definitely want to investigate MIDI size bags. Coloplast Sensura has them. They are smaller and shorter than the bags that will be used in the hospital. Much better for us petite women. I can't be bothered with covers, belts, wraps.... any of that junk. I like to keep things simple as I find it all more comfortable and easier to manage.

As for your weight. It doesn't seem too bad. I am 5'2.5" and I believe I was down to 90pounds before my first surgery for the jpouch and dropped dramatically during that hospital stay. Once that nasty colon is out, you will feel so much better. And once you get off all the hospital drugs you probably will have a great appetite and be able to regain weight. Don't worry about it. And whatever you do.. don't weigh yourself while you are in the hospital. And if need be, have someone put paper over the bathroom mirrors. It can be scary!

And yes, it is best if you can try to be your healthiest prior to surgery. But for some of us.. we were so sick.. we ended up with emergency surgery and we all still survived. So don't fret about it too much.

One last thing I would highly recommend for you... is please plan on staying in Cleveland for several nights after you are discharged from the hospital. There are lots of great, comfortable not too expensive hotels downtown. It is just best if you are close just in case... something should come up and you need to be seen again by the surgeon. Based on my lengthy surgical history I think this is extremely important for you to stick around nearby for a few days.

And lastly, I will be at CC on sept 4th myself for a CT scan and several appts. I would be more than happy to meet you to discuss anything and help answer any of your questions. Unfortunately I am quite familiar with the most of the CC campus and can definitely suggest a place for us to meet for a coffee. let me know.