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sickranchero

sickranchero

Joined
Jul 19, 2007
Messages
65
Hello everyone,

It has been a while since I have posted about me. A quick fill in about my situation before I start with the new stuff.

To make a long story short, in Jan 1994 I was diagnosed with Crohns at age 10. I got into remission quickly and stayed in it for 10 years using Sulfasalazine. From 2004 to now I have been fighting a pretty much constant flare with many treatments: prednisone, 6MP, imuran, remicade, humira, asacol, lialda, antibiotics, probiotics, entocort,.... I am pretty much dependent on steroids.

Over the past 5 years I have had colonoscopies and a pill camera done. Three years ago I got a new GI and he specializes in IBD's. After all of this testing and my symptoms over the past 6 years he has always told me it matches with UC more than Crohn's, but he never wanted to jump to that conclusion because of my original diagnosis. I have finally reached my extent of treatments and the side effects are causing more problems than good. For the past year he has been suggesting jpouch surgery, BUT, we must be certain that it is UC and not Crohn's or it will be a waste. Lately I have gotten more second opinions from other doctors including Stanford Medical, and everyone agrees about my tendency towards UC.

My GI just did another colonoscopy on Monday and so far the biopsy results say that there is no Crohn's in my colon but UC instead, and that my small intestines are normal. My past 5 years of colonoscopies have shown the same thing, I just didn't have this doctor and other opinions. So if all the rest of the results say that it is UC and not Crohn's, it looks like I might be having jpouch in the near future.... a cure! Hopefully
 
I hope so too. Its great to see somebody that has a bright outcome and can say things are looking great.

Good luck.
 
Well I know we all dread surgery, but what a relief it will be for you!!
 
hi there,
great to see the update, and i hope that things work out positively for you. :) keep us updated! :)
 
HI Ranchero, I have a friend who just had the Jpouch procedure done at Mayo in Phoenix....The doctor there has revolutionized the surgery so there is no incision. The surgery is done solely through the ostomy site or through the rectum.....They are doing so many great things for us IBD sufferes....I hope this surgery gives you back some quality of life....Good luck and keep us posted!
 
Thanks everyone. It's just a waiting game now to see the rest of the results and to work with the surgeon if that is the best direction. Even though it is a possible cure for UC, there are still complications that worry me about the surgery, and lifestyle changes because of it. I am just glad that I was able to get more opinions and more attention from doctors. I hope I'm not too optimistic, I don't want to jinx myself. If anyone has any questions about my experiences over the years, don't hesitate to ask.
 
Good to see you back and able to update us regarding everything you have been through!

Certainly has not been an easy time for you at all and really feel for you.

Truly hope the surgery goes ahead and all works out well in the future. Keep us posted.

Will be thinking of you! ((hugs))
 
Hey THere...good luck. I have the jpouch and it has been great. I've had it for over 4 years. Unfortunately, this year I have developed crohns. BUt, even with that, I am glad I opted for the pouch. Life had been good before the crohns with the pouch. If thats your photo, you look young. It is a good option for you. I hope things work out..Good luck to you and keep us posted! Sue
 
Hi Ranchero! I am in the same situation as Sue 2009 - original diagnosis UC, and got the pouch in 2002. I was recently rediagnosed with Crohn's, but the pouch has been GREAT!!! Definitely worth any surgery risks. I would recommend it to anyone that is a candidate. It will bring so much relief after years of suffering.

Good luck to you - keep us posted!
 
Thanks ladies,
I am keeping my fingers crossed that I am cleared for the surgery. I have been trying to get as much information about life after surgery and what to expect. For those who have had it what was it like pre and post takedown? Any suggestion from your experiences? If I am a candidate for it, then I need to organize all my time off from work and make sure I am confident and can control my body before resuming normal life again. I should hear some results/answers this coming week.
 
Sue,
I'm 26, actually my 27th b-day is Tuesday, so hopefully my age helps with my recovery and life after surgery, if I'm cleared for it.

I've been on prednisone soo much over the past 6 years that after a bone density test last summer, I have osteoporosis and osteopenia now. Luckily the Dr said that due to my age I can regain bone density still.
 
Update! The final colonoscopy results came back and show no Crohns but inflammation due to Ulcerative Colitis. My GI had me send a message to the surgeon letting him know the recent information and that the disease is not under control and we have exhausted effective means of treatment. So now I'm waiting for a response from the surgeon, and see what he says should be done. Hopefully I hear something soon!
 
Another update. I have spoken with the surgeon and I am going to do it. He is having his department call me to set up a pre-op appointment. He says they are booked 4-6 weeks out, but I will find out when they call. I also asked him about recovery time since I have to arrange it with work. He says the first surgery is about 6-8 weeks and the second surgery that is 10-12 weeks later has a 4 week recovery. I'm excited and nervous at the same time, but I am looking forward to it. My GI had me stop taking Imuran a couple days ago, but still continue steroid enemas, humira, and lialda for now.

I also found a really awesome website called

http://ucvlog.com/

It has soo much information about the jpouch surgery and a video log of everything. I recommend taking a look and watching some of the videos.
 
Hey SR, I feel so bad I missed this thread and you are looking for support!

It is a good thing you have a positive attitude towards your surgery, and had sometime to think about it. A surgery decision should never be made lightly. I understand your excitement to get this done, and then a second surgery... the best part is you WILL be out of pain! It takes time but hopefully, since you are young you will bouce back quicker.

I am curious tho, did your doctor mention any drugs after your surgery? I know you will be just fine, I am happy for you too. No one should be in pain, with all the treatment and surgery nowadays something should help.

My thoughts are with you, good luck and happy you kept us updated! :smile:
 
Hi there!
I've missed this thread too, so sorry
Hope everything goes well for you and with your positive attitude and youth, I'm sure it will!

good luck
xx
 
Hello. We're the same age, and I can tell you from what my doctor has said about my surgery- that our age is a huge benefit to recovery. I've had a relatively simple and quick recovery which the doctor largely attributes to my age.

Good luck with the procedure, I hope it brings you the relief you're looking for.
 
Ranchero - That is great news! Glad you are going for it - I am sure you will find a big improvement in your quality of life.

Keep us posted along the way so we can follow your progress!

Take good care of yourself! - Amy
 
An update everyone! I have my surgery date! May 6th is the day that my colon and rectum will be removed, jpouch constructed, and a temporary loop ileostomy created. I am counting down to hopefully a success. I have a pre-op April 16th and then go again May 3rd so the stoma nurse can mark the location and to teach me about living with a stoma. Thanks for the support everyone!
 
I am happy for you! I know you must be nervous. I have had resections but not a stoma. Some day I know that is down the road.. but having a painfree life is our aim. Keep us posted on how you do in the post surgery too!
 
I hope the next 6 weeks goes by quickly for you and all is well before surgery!

Good luck! Be sure to allow yourself plenty of time to recuperate.

- Amy
 
Thanks everyone, I am really looking forward to this in hope for relief. I have started tapering the steroid enemas and substituting 5-asa enemas in between. One more week until pre-op.
 
:panda: sending lots of good luck, and hoping this will give you some normality back
xxx
 
You're a week away from surgery! Just wanted to say good luck!

Please pop back in and let us know how it goes!

- Amy
 
Thanks Amy, I'm counting down! I forgot about my thread and updating it.

My pre-op went great, the surgeon gave me some more details about what to expect. He also told me that I will have a catheter and that they can do a certain epidural which he recommends. He even mentioned that it is possible to do the whole procedure in one surgery, no temp ileo, but not for me however since I've been on steroids, biologics, and imuran so long.

Next up is my appointment with the ostomy nurse on Monday to mark the location and learn about living with an ostomy. Thanks everyone.
 
Getting closer eh? I bet you are nervous and excited at the same time. What I would give even 6months of a painfree life! Good that you are getting the epidural, you will be happy about that. Keep us updated ok? Looking forward to no pain would be a great gain!
 
Hey Ranchero...I had that epidural and it is awesome. It eliminates the need for a PCA pump and I felt NO pain whatsoever after my surgery. I had used the PCA pump before with a different surgery and it didn't work so well for me...the epidural is definitely the way to go! Let us know as soon as you can how your surgery goes...I will be think of you.
 
living with stoma

Hi Ranchero, All the best wishes for next week. please keep us posted with your progress.
A great web site of videos, 'how to live with ostomy' is

http://ucvlog.com

Will be thinking of you and once you recover from the surgery I hope it brings you the relief you're looking for.

you Good luck with the procedure,
 
Not sure how different an ostomy is for a man than for a woman, but there are some great threads on here where you can get a lot of great tips.

One thing I will say about the year I had mine - it was GREAT and I was amazed at how FREE I was after all the suffering and AMAZED at how much I could do - exercise, swimming (in a 2 piece!), sex, wearing "regular" clothes. Really, I found there to be no limits to my life at all.

Good luck! Hoping for a fast recovery!
 
Thanks everyone! I am excited(as weird as that sounds) for the surgery. I am going to do the epidural because it sounds like the best thing to do. The only thing making me nervous is when I am there on Thursday and they tell me they are injecting the anesthesia and knowing that I am going to fall asleep any second and wake up with a different body and not know what to expect. Another thing is they told me I will be in the hospital for 7-10 days after, I really hope they have internet or something, or else I will go crazy with boredom. But I can't wait! Thanks again.
 
I'm in the hospital right now - I would be bored out of my mind without the computer! Do you have a laptop? We have an "EEE" mini laptop - costs about $350. Add an aircard and you're good to go. Maybe check with the hosp before hand to see if they have an unsecured network you can use.

Otherwise.... lots of books and Scrabble!
 
Amy, you're in the hospital? Sorry to hear that!!!

I had a notebook when I was in the hospital...a Compaq netbook....about $300. And I used the Rogers internet stick. Was fantastic!! Kept boredom at bay :) Well, between that and the dvd player my bf bought me :)
 
PS My hospital has free internet for patients and the connection is much better than my aircard.
 
I am hoping the hospital has wireless internet that I can use, I will be at Kaiser in Walnut Creek, CA. I was going to bring my laptop and I also have an iphone.
 
Well had my appointment with the stoma nurse today. It went good, she showed me the different types of appliances, marked the location of the stoma, and answered my questions. Finding the stoma location was interesting, it is about an inch below and 1.5 inches to the side of my belly button. I was concerned about my belt-line interfering and the flange adhesive covering my main incision, but I don't have many options because I am not that big of a person and abdomen real estate is hard to come by. But it looks like I can either get higher waistline pants and have everything below or have to wear it outside or normal pants. I also got my blood typing done today so they can have transfusion blood on hand for Thursday. Anyways, counting down, tomorrow's my last day of work, and I am looking for a break. Starting to get a little nervous. I have a feeling I am going to be a nut case Wednesday night and Thursday morning, we'll see.
 
Hi Ranchero, I am sure you will be fine. Just think that you will have to change your name from sick ranchero to healthy ranchero.
best wishes
 
Thanks. The funny thing is my username "sickranchero" has nothing to do with my disease and health. When I was in high school I had a Ford Ranchero and I fixed it up real nice. It was "sick" which is slang for cool. The "sickranchero" term just stuck and I still use it today.
 
Hey good luck!!

And Simon Cowell's pants are all the rage over here!!! lol

Chillax and stay focused, fingers crossed for you
xx
 
OK everyone, I heard from the surgeons and I have to be at the hospital at 6:30am tomorrow morning. So I'm assuming I will be done by lunch! I'm trying not to think about it, the anxiety is kicking in.

Oh, and I started the good ol' bowl prep about 3 hours ago. I have to drink as much of it as I can. I'm kinda use to it though after 5 colonoscopies. Anyways, I feel sorry for my toilet at the moment. haha
 
ranchero wishing you all the positive wishes and good thoughts.
will be waiting to hear about your progress
 
Hello Everyone!

I'm Ranchero's Fiance. Thought I would sign on and give you guys an update on him since he has no internet at the hospital. I figure I've been updating everyone else, why not you too. Especially since you have helped him so much to understand what he would go through.

The surgery went really well. They took him in late though. We got there at 6:00 and they didn't take him to prep until around 8:00 AM. The actual surgery didn't start until 11:00 AM. Finally at 4:00 PM they were done and we got to talk with the surgeon. He did very well while he was under. The surgeon said he didn't need to be intibated, which is really good. And he didn't need any blood during the surgery. He was pretty out of it when we saw him once they got him to his room, but that is expected when waking up from anesthesia.

I don't want to spill too many details because I know he will want to tell you all about his recovery once he is home. I'll just give a quick breakdown for you.

The first day was rough due to complications with the epidural catheter. Long story short, it wasn't in the right place and then it slipped out. So the doc removed it and he had to get the PCA adjusted and doubled to deliver enough pain meds. That was a really painful day.

Second day he did much better. Liquid diet went down good. His stoma was doing really well. Pain management was better. He got up and walked twice. The night was rough though, but only because his roomate was an elderly man who I think had an onset of dimensia. The guy was very loud talking in his sleep, then kept trying to get out of bed all night. Made it hard to sleep.

Third day he did great. Full liquid diet, walked about 4 or 5 times. And we got a room change for him. So now he's in a quiet room with a very mentally alert person.

Today, Day 4, is even better. He got the catheter out this morning and the doc took out the PCA pump. He's on Percoden for pain now. For dinner they are trying him on soft foods. The doctor is optimistic. He says that maybe he can come home after the 5th day. So we'll see how that goes. I know we both can't wait for him to get home.

There is so much more to tell but I'll leave that for him to tell. I just wanted to personally thank you guys for giving him support. It really helped calm some of his nerves. Of course, he was pretty disappointing about the whole epidural thing. That was his biggest bummer.

But anyway, Thank you.

From Ranchero's Girl,
Melody G.
 
Aww, thanks for updating us, Melody (pretty name!). Glad to hear the surgery went well. Hopefully the worst of the complications are over and he can go home ot you soon. Sounds like his recovery is going really well already! :) Best wishes to the both of you!
 
Hi Melody G and Rachero,
Thank you so much for the update. So glad to hear that the surgery went well. Did he end up with Laproscopic surgery? I am sure we've all been waiting to hear how is our Ranchero doing.
Please send him our best wishes and quick recovery.
Thanks again
ACG
 
He didn't get laproscopic surgery. We would have had to go to another state for that one. So he was a bit upset about that one. But he is definitely doing much better now. I'll let him know you guys said hello and wish him well. I'm heading over after work to see him.
~Mel
 
Thanks for the update Melody! Please give Ranchero our best and tell him we're all wishing him well!

- Amy
 
Hi Guys! Quick Update! Ranchero is doing better every day. The doctor says he can come home tomorrow so I'm sure that he will be on to say hello to you soon. He has his phone with him that has 3G but he says he hates to try and use it to check anything because it's too slow. So he'll catch up with you later. But he appreciates all of your support.
 
Thanks Mel for the update. It is great that he goes home tomorrow. I hope his pain is managable.
best wishes to you too
Best
ACG
 
Hey everyone! Today is my 2nd day home and 7th day since surgery. I see that you have met my fiance Melody who has filled you in in my absence. She pretty much summarized, but here is my take:

Surgery Day:
Had to show up at the hospital at 6:30am and I finally got called into pre-op at 8am. The surgery finally started at 11:30am and ended at 4pm. When I was waiting in pre-op they started me on IV fluids and I met my anesthesiologist. When I finally went into the operation room I met all of the other nurses. Once in there they gave me a local anesthetic and inserted the epidural while I was awake. After that they gave me the general anesthetic and that is the last I remember.

I barely remember that evening after I woke up, must be amnesia, but I was in quite a bit of pain. The pain went on throughout the night with little help of my PCA(0.2ml morphine every 14 minutes)

Day One:
The pain control problem was still continuing full force and the foley catheter was part of it. It seemed that it wouldn't drain well and I kept getting intense sharp pains in my right groin and would work its way to my abdomen. Finally they sent an anesthesiologist over to see me and he used a bag of ice to see if the epidural was numbing my abdomen. Well, from that testing, we found out that the catheter was inserted about 10cm into my spine and as it was inserted it deflected to one side which would only treat half my abdomen. He pulled it out a little bit and gave me a big dose of medicine which worked great.

Later that afternoon Melody gave me a sponge bath and after the I was having the pain problems again. So finally that night another anesthesiologist came over and did the same test and found out the epidural was bad. I opted to have the epidural pulled out and redone. 40min later the guy said that we couldn't because my white blood cell count was too high and that could risk problems with my spine.

Instead they doubled my dosage of morphine and halved the time, which kept it under control. Just keep pushing the button. Went for a couple walks.

Day Two:
Went fine pretty sore, foley catheter was still annoying, and my stoma was working. Been on a liquid diet so far. Met with the stoma nurse and she changed my bag while I watched and learned.

Day Three:
Finally got moved to a new room because my roomate was going crazy. Oh, all along while recovering I ooze mucus and stuff from my but. I can't control it, it just does it's own thing. I started using some panty liners and underwear to control the mess. The Dr said it will reduce with time.

Day Four:
Met with my surgeon finally and he was very impressed with my recovery. He increased my diet to a soft liquid diet. I also had my PCA removed and my foley removed. They started giving me percocet every 4 hours.

Day Five:
Saw my surgeon again and he was still happy with my progress so he upped my diet again(this will be bad eventually). That day they started giving me solid foods and for lunch I had a cheeseburger. That afternoon I was in the same crazy pain like that with the bad epidural. Looks like solid food was not such a good idea. Everything was backed up and they had to give me a shot of morphine. Finally it passed and I told them I need liquids only. I was under control after that.

I changed my bag for the first time today with the stoma nurse watching.

Day Six:
The surgeon said I can go home and told him I was worried about pain control and would leave when I was ready later that day. I made it through two meals and most of the day without a problem so I went home at about 3pm. The hour ride home was torture since the roads are soo bumpy, but I made it.

Day 7 and 8(today):
Been pretty uneventful, just managing pain, resting and walking when I can. On Day 7 my bag leaked and had to change it, which was a first for me.


So all-in-all, it has been a challenging journey with still more to go. I can't wait until I feel no pain and can up my diet more. I have to be patient which is hard for me. Anyways, I'm back, go ahead and ask me anything!

Joey
 
Hi Joey AKA sickranchero as "sick" for very cool...
It is so great hearing that you are recovering at home. Was very happy through Mel of your progress. I hope your pain is managable. Your recovery is amazing. The fact that you got up walked so fast is amazing and shows how determined you are.
can you sleep at all?
Best wishes and looking forward to hearing from you
acg
 
Sounds like you are doing very well so far (with a few minor set backs)! It's good you are taking your time with pain and food tolerance. Sounds like you have a great support system for you and you are doing really well with changing your bags too. Thanks for updating us on your progress. Hope it continues to go smoothly :)
 
Ok, I have some appliance questions now. I was curious what you guys use? Right now all I have is a lot of Hollister one-piece clip style bags. I am on day three on my current one and worried about how much longer it will last. I have a sample pack with barrier rings, convex barriers, and paste. What are your takes on these add-on seal improvements? I want to get my self setup so I won't have to worry all the time about leaks. Thanks everyone.
 
Thanks acg for the links. I am feeling pretty good. At times it can get to me though. I spend a lot of time laying reclined on the couch during the day with a few walks down the street. The pain that bother's me the most is not my surgery pain but back pain from all of this. If I change positions throughout the day I can somewhat control the pain.

So far it is day 2 on this new bag. I used a barrier ring this time to see if it helps ease my mind about leaks. I should hear from the surgeon, because he wants me to come in this week so he can take out my staples and JP drain.

Thanks!
 
sickranchero said:
The pain that bother's me the most is not my surgery pain but back pain from all of this.
Click to expand...

Ooooh! The back pain. That was the worst part for me too. I actually took the pain killers mostly for the back pain and not the incision pain. I found myself "guarding" my wound which caused the back pain. Once I was recovered from surgery, I started doing Pilates to strengthen my core muscles and it really helped.

Take it easy and give it plenty of time! Rest, rest, rest....
 
hey joey, glad to hear that you are making progress and feeling pretty good. the fact that you are taking these walks I am sure helps a lot.
please keep us posted
best wishes
acg
 
Thanks ya'll. Today I go in for my followup appointment with the surgeon. I'm pretty sure I will get my staples out and my JP drain. My surgery pain feels like I had an intense workout(a lot of sit ups), I can't cough yet and laughing still hurts some. Getting better though, I'm guessing I should be almost normal in another week.

Kinda strange though because in a couple months I go back under the knife to reverse the ileostomy and use my new pouch. Which means another round of recovery.
 
Please remember to take it easy! Driving, opening a window, vacuuming, cleaning, going up and down stairs - they are all really hard on the ab muscles. And don't even THINK about yardwork until you are recovered from your second surgery!

Don't push yourself! You need and deserve to take you time with your recovery.

Glad you are doing well and I hope you are feeling better every day!

- Amy
 
Thanks Amy, I have been taking it easy, I can only do basic stuff. I am however able to move better, but unfortunately this new movement is causing problems in my flange seal. I am trying to figure out how to make it last longer than a day or two. I just put on a new one-piece bag last night and this morning I can see it coming off my skin creating a horizontal tunnel/leak :( I have some presized convex rings that I can try, I just need to remove some material to make it shrink. My stoma is now 7/8 inch now. I see the stoma nurse next Wednesday so hopefully I can get this all situated.

Joey
 
Aha! Joey is your real name :) Nice to meet ya officially!

I thought i remember reading about Kello having a similar problem with the rings (correct me if I'm wrong!) and someone suggested a type of "glue" that kept the seal better. It might be obvious that I have no experience with this firsthand since I don't even know the proper names for these things, haha. Sorry. Maybe someone could be more helpful than me here!
 
hey joey!

yep marisa is correct i had same sort of problems, though instead of the premade rings i was using the moldable strips you know? and MADE them into a ring. but basically the same material.

anways, i found that the ring actually made things worse for me, as it lifted the flange off my skin, you know?
like.....hmm im trying to figure out how to show this.....
HERE i drew ya a little picture :D

stomaring.jpg


the 1st drawing is how it lays when theres NO ring under it

and the 2nd shws the ring, i made it green haha

at least thats what happens for ME. when i use the ring there is far less surface area of the flange sticking to my belly and so it goes downhill from there as it pulls on the ring too.
 
Thanks Marisa and Kelly you're great!

Kelly I don't have the moldable strips to try out, just the flat rings and the convex rings. So far I tried the flat ring and it worked ok, about 3 days. What I have noticed, and how I judge my seal integrity, is when the flange is fresh and is adhering it is a darker brown color around my stoma(i call him yoshi by the way). As time goes on, starting from against the stoma the seal slowly pulls up and turns white. Over time the seal looks like a volcano and almost grows as high as the stoma is tall.

Do you or anyone have to deal with natural folds in your skin from bending over and moving that interfere with the seal??

Thanks!
 
yes exactly! i thinki as the moisture from your stomal area soaks into that....rubbery material that makes up the flange, it swells up and turns lighter, and "turtlenecks" up around your stoma.
i do the same, is a nice way to judge how the seal is doing.

LOL at yoshi! love it

yeah the folds of my tummy do affect things, but it only seems to cause a problem when i have on a once piece pouch. when i have one of those on, it doesnt take too long for it to pop up in the middle you know? as it gets folded.

but like i said, when i have my norm 2 piece on it doesnt do that.

do you use a belt? the one that hooks on the little clips on the flange? i find it helps a lot. i kinda love it now
 
hey joey, cant wait to hear the reason you called it Yoshi! I love it!
Can you sleep through the night yet?
best wishes
acg
 
haha yoshi fits in my mind. maybe cuz it makes me think of squishy. or moshi!! you know those moshi pillows?!
 
Haha, you guys are great! Actually I chose the name Yoshi from the Super Mario game. I hardly ever play video games, but in the game Yoshi sticks his tongue out like a frog and make a squishy sound effect. When I was in the hospital and my insides started waking up, my stoma made the exact sound as the game and Yoshi was the first thing that popped in my mind.

Kelly - I have only been using the one piece pouches, but I managed to get the Dr's to give me a new image two piece. I tried it and it lasted almost 3 days. I really want to try it with a belt but I dont have one. I will try a two piece again when I get one. Hopefully the WOC nurse will help me out on Wednesday. Oh, and the flange "turtlenecks" but then tunnels directly to my main incision since Yoshi is close to it and the flange covers it. The incision looks like it is starting to open because of the tunnel :(

I just changed the pouch now and used a convex barrier ring for the first time with another one piece so we'll see how it goes.

acg - I can't sleep through the night yet, I usually wake up every 4 hours. I wake up because I have to pee from drinking soo much water and I just empty the pouch at that time.
 
Hi Joey - Just thinking of you and hope you're doing okay!!

Hope you're recovering from the surgery okay and have the bag situation all worked out!

- Amy
 
Hi Amy,
I'm doing excellent! I feel soo much healthier and better than before surgery. No more pain, medicine, but just a bag to empty. Tomorrow will be the end of my first week back at work. As far as the bag situation goes, I use convatec one piece and change them every seven days. They hold up to any physical activities I can dish at them.

I also have the date for my takedown surgery, it is August 5th!
 
Hi Joey, Its so great to hear that you are back at work and doing great.
I am getting excited about my surgery next week, although mine will be permanent.
Any suggestions about the location of the stoma?

How are you doing with sleeping at night?
Best wishes
 
Joey, one more question
do you have to shave the area around the stoma before attaching the appliance?
thanks
 
Got a question...

For all of you who have had this surgery and takedown(stoma reversal) what was life like after the takedown? How did it feel? Was it controllable for you? Experiences please.

Thanks a bunch!
 
I had a year between my temporary ileostomy and j-pouch construction, then another 3 months till my takedown. So I had my ileostomy for almost 15 months. My shpincter muscles were kind of loose from lack of use. I suspect you will be in better shape since yours will be out of commission for only a few months.

I did have some leakage at the beginning, and did a lot of kegel exercises to help with that.

I remember there being a lot of butt-burn the first couple of months and I used a lot of diaper rash ointment (I was never as big a fan of Calmoseptine as others are). It also takes a while for your pouch to get to full capacity. So you will go a lot at first and the pouch stretches over time so you have to go less. I also got a bidet attachment for my toilet to help with the butt burn. On a good day,my stool would be like mashed potatoes, but often times it was more like oatmeal. So the bidet helped with not getting chafed or burn from wiping too much. I got mine from USA Bidet. It was the best $150 I ever spent.

On average, I would go between 6-10 times in a 24 hour period, including 1-2 times at night. That would mostly depend on what I ate and when I ate it.

The takedown surgery itself was a piece of cake compared to my colectomy and j-pouch construction surgery. I didn't even use the PCA and was able to get by on just oral pain meds.

Overall, it was GREAT! I love my pouch and I hope I can keep it!!!

- Amy
 
Thanks Amy for the info, I am looking forward to my takedown. I have read that it can take up to a year for my body to adjust to everything. Right now I empty my appliance about 4-8 times a day depending on what I eat. I guess I will find out more about the effects of my diet after my takedown. Buttburn will also be a new challenge to tackle as well. Hopefully I will adjust to it all quickly and get back to being disease free. Thanks for the support. Good luck!
 
PS If you don't want to invest in a bidet or bidet attachment, try a cleansing bottle. They give them to new moms in the hospital - you can find one at most drugs stores. I use mine when I travel since I can't take my bidet with me!
 

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