For me the first few weeks were the most difficult, but slowly gets better.  I really stuck to the low residue diet and made it a point to stay hydrated.  Going often in the beginning is not unusual at all.  My surgeon basically suggested that I plan to stay at home during the first two weeks.  It definitely was uncomfortable trying to hold it in, but it gets way better as your pouch expands.  I am almost a year out and average 3-5 bm's a day, depending on what I eat.  I can last about 12 hours from last evening visit to the toilet to the first of the next day.  I do get pressure as the pouch becomes full, which can be uncomfortable if I am not near a bathroom.  I tend to basically go more toward the end of the day.  Butt burn is a big pain and I found that Calmoseptine and a bidet worked for me, along with wet wipes and soft toilet paper.  Airing out the area helps as well.   At this point, I do not need to use Calmoseptine much at all, or for that matter my bidet.  I can only tell you my experience, which has been very good.  I will say that my last surgery was better than I had expected.  Good luck and just remember it does take time!

Mochi,

Man, you sound like I did almost 10 years ago. Think I'll work backwards through your questions.

First, yes - I was suffering some mild depression post takedown because honestly life was farther from normal than it was after either surgery, and I actually felt so good with the ostomy. I was going to the bathroom 20-30 times a day (lots of it due to gas that couldn't be expelled without the unexpected). I had a 4 year old at the time, and I would get most depressed when she would want me to play and I kept having to get up to go to the bathroom. Had to get to the point of acceptance finally, where I could honestly say, "Well, if this is how life will be for the rest of my life, so be it. I'll just make the best of it." Thankfully - things did get better.

Butt burn - mostly typified by people as external, but can certainly be internal (anal canal) as well. This got better over time. Prilosec once a day in the AM was the thing that finally helped resolve this for me. I guess it helped reduce the acidity. In the meantime, there are couple ointments that help: Gold Bond medicated anti-itch cream (I used this - has menthol) and Nupercainal (others say it is effective and helpful). My surgeon also has her own compounded ointment she writes RXs for that is awesome (it has lidocaine and a couple other good meds to promote healing). Fiber may help as well.

The bleeding was distressing, and did get progressively better over time. You may find that things are fine in the AM after waking up, but worse later in the day. It should resolve itself. And it should be "old" blood - not bright red, "new" blood. And shouldn't be lots of it. If it's "new" and / or lots - might need to have your surgeon take a look.

I can't say I had much in the way of cramps - outside of gas. If you are experiencing gas cramps, that's normal. If you ever find you have cramps that get more frequent and more intense, accompanied by a lack of stool and sometimes even a lack of gas, you may be suffering from a blockage. You will know if it's an obstruction - nothing has ever hurt more. Grape juice helps push things through - way better than prune juice or anything else I have tried.

And pain at the ostomy site - I can totally relate! I told my surgeon I hurt way more than the "big" (second) surgery. And that she should tell her resident he needs to learn to be a bit more gentle. They do have to pull things together very tight before closing things up (I am assuming you had some stitches?) - so not surprised.

All of these things WILL get better. For me it took months to a year to see significant progress. Not what you want to hear, probably, and hopefully you will heal much sooner. Just keep trying things and see what works for you and give yourself time. If you find yourself more than just a little depressed, don't be afraid to find a good counselor. You are grieving right now - the loss of freedom, the loss of what was (some people even grieve the loss of their colon; can't say I liked mine that much

Steve

I will say I do remember having some bloody discharge.  My surgeon said this was to be expected.  In the beginning I was calling the office if something came up that I had a concern about.  Especially about the healing process and leakage.  My first night home I had an incident of a lot of night time leakage and for a while after that.  Now I don't have any.

Thank you all so much for the replies. I had weened myself off pain meds immediately after leaving the hospital. Today I decided to give them ago again to see if it helped with the extreme cramps. I still get them but they are more manageable. 

I should have mentioned in my original post that I am still on the blood thinners the hospital sent me off with. I'm hoping the bleeding stops after the blood thinners are over. I meet with my surgeon tomorrow, I'll post an update tomorrow. 

Things were tough at the.beginning. I treated my Butt burn with pure Lidocaine (5%) ointment that totally changed my life!!! I don't need it anymore but at the beginning the burn was Excruciating! Ask your doc for a prescription!!!! Hang in there ... it def improves as your body gets use to the new plumbing!!!   I love my J-pouch now...it saved my life!

Janie

Okay guys! I met with one of the people on my surgeons team today, she was very displeased with the number of times I was going to the bathroom. I was also apparently a little bit dehydrated. She is having me start up Imodium at night before bed and in the morning. She said that my surgeons goal for my pouch will be to get my bms to 3-4 times a day... if that actually transpires I will love this pouch!

i have to text her in the morning to let her know how the Imodium went tonight. 

My surgeon is going to call me (probably next week) in regards to the bleeding/cramping issue. 

I really don't know of anyone with a Jpouch that only goes...3-4 times a day! Don't want to be Debbie Downer here but I think that is unrealistic. 

I was given Peptobismol when I left the hospital.  My surgeon did not start me on Immodium until about a month out from surgery.  I now take two at bedtime and Lomotil on occasion, when I am going to be on the road all day.  I also take Benefiber at breakfast.  Now I rarely take Peptobismol and I have 3-5 bm's a day.  My surgeon had told me to expect an average of 5-6.  I do remember that in the beginning I had many more than that.  What has also helped is not eating late in the day.  

Janiep posted:

I really don't know of anyone with a Jpouch that only goes...3-4 times a day! Don't want to be Debbie Downer here but I think that is unrealistic. 

I have yet to read of anyone that only goes 3-4 times a day. I am pretty small, not a huge eater, would that play any part do you think? 

Im not getting my hopes up for her comment, I will be content if I can get past this going to the bathroom every two hour hurtle. 

Janiep posted:

I really don't know of anyone with a Jpouch that only goes...3-4 times a day! Don't want to be Debbie Downer here but I think that is unrealistic.

I have 3 to 4 BMs per day, some days only 2, in fact, I very rarely have less than 2 BM per day and rarely more than 5.

I can go for a good few hours in between BMs and if I have to, I can hold out for maybe a hour when I feel the need to go.

My BM frequency has been much the same since takedown surgery.

Prior to surgery my surgeon said I should expect 5 to may be 7 or 8 BMs per day and 4 to 5 BMs per day would be the best outcome.

Since, takedown, I've never had stomach cramps or passed blood, whether old or new blood and the only butt burn I've experienced was just after takedown, which I believe now, was actually an anal fissures, within what remains of my anal canal and caused by dilation during takedown surgery.

I take 4 Imodium through out the day, including one just before bed. When BMs become more liquidy than normal, I take maybe an extra 1 or 2 Imodium, (never more than 6 per day)

I often wonder if my butt burn was bad in the beginning because I was also dilated during my takedown surgery.  I have follow up tomorrow prior to scheduling my first pouchoscopy.  I don't usually track my bm's but figured I would for the last week, in case my surgeon asks.  The most I went was 5 times and the least was 3.  Today, I was on the road so I took Lomotil before leaving the house.  I stopped at home in between to pee around 2:30 and drove to my last appointment for the day; didn't need to go until around 4:30.  Good thing I was at a Kohls.  Sometimes if I'm out, I find it embarrassing to empty in a public toilet, so I finish when I get home.  Even with that I only had 2 bm's today and that is since last night.  I will most likely only have one more tonight.  I have always been a light eater.  However, I always eat three meals a day, with 2 snacks as well.  I'm 5' 3" and weigh about 103 lbs.  one thing I have done is decrease my sugar intake a lot, so this might also help.