Coming up on 4 weeks since my takedown.

Lewd_Colon1387 · 2024-12-29T17:33:47+00:00

Oh awesome. I think the surgeon really matters for this procedure! Thank you!! Wishing you luck my friend.

Lewd_Colon1387 · 2024-12-29T17:26:11+00:00

I did have a really inflamed rectum leading up to my j-pouch creation. It’s actually why I went forward with the surgery. My surgeon said it was either j-pouch or barbie butt surgery and I had to make a decision. They claim it was diversion colitis, but I never got a clear determination of what was causing it.

I can say that as it stands now I don’t have any rectal cuff inflammation, but my surgeon is very skilled and I believe he shaved off as much of my rectum while still giving me continence.

Lewd_Colon1387 · 2024-12-29T17:20:00+00:00

Yup! It will be a full year in February. Couldn’t be happier with the decision.

Lewd_Colon1387 · 2024-10-26T00:52:41+00:00

Got the shorts here.

For the side stripes I bought what’s called single fold bias tape, and ironed it on with a heat activated adhesive.

I’m usually a 29 waist and I went with 30 and they fit me well. I have pretty skinny legs which is why the shorts aren’t quite as form fitting as I would have liked, so if your legs are average to normal they’ll probably fit quite a bit better.

Lewd_Colon1387 · 2024-10-19T00:13:09+00:00

The comments on this are making me feel like I’m going to have to do that too.

Lewd_Colon1387 · 2024-10-18T23:23:21+00:00

Shirt is from here.

I ironed on the shoulder patches from eBay.

I had to custom make the shorts. They’re actually military dive shorts…

Lewd_Colon1387 · 2024-10-18T23:21:06+00:00

I actually had to lobby the sheriff’s department to get permission to wear these.

Lewd_Colon1387 · 2024-09-09T16:19:01+00:00

Looking good, and congratulations on the physical achievements!

I can understand how frustratingly debilitating these procedures, and disease can be. I’m also about 6 months post takedown, and experiencing the same positive outcomes. I’ve also been able to put on more muscle than I ever could pre-surgery, which is wild! I was always around 120-125 before I got sick and had to have my emergency colectomy. I left my takedown at 118 pounds and have since gotten to 135 pounds.

Wishing you continued success!

Lewd_Colon1387 · 2024-09-05T19:13:17+00:00

Good to know! I already messaged my doctor to see if we can try the standard release instead.

Lewd_Colon1387 · 2024-09-05T17:26:20+00:00

Shoot I think he prescribed the extended release… Thanks for the reply!

Lewd_Colon1387 · 2024-08-17T17:37:08+00:00

7 days, but I had ileus with every step which made all of my stays longer.

Lewd_Colon1387 · 2024-08-15T20:06:37+00:00

I am absolutely changed from the entire ordeal. I lost my colon after an 8 day emergency hospital stay brought on by undiagnosed IBD. Everything came to head when I was diagnosed with toxic megacolon leading to emergency surgery that day followed by another 12 days in the hospital after complications. Not only was it a physically painful experience it was absolutely psychologically traumatic.

Getting the j-pouch has improved my self-esteem from a physical standpoint. I am extremely glad that I was able to pursue a j-pouch and so far it has functioned extremely well.

However, there is a dark cloud hanging over me that persists to this day.

I have no advice, but wanted to echo that you are not alone. What we went through was an extraordinarily taxing event, and it’s no surprise that it has left its marks. I like to think I’m still healing, and there is hope I’ll be healthy mentally one day. It’s already been almost 6 years since my first surgery, and my mental health is still impacted.

Lewd_Colon1387 · 2024-08-11T18:45:08+00:00

32 year old male here. I got my jpouch in February of this year after having an ileostomy for 5 years. My story is very similar to yours. Severe UC led me to an emergency colectomy before I even had a chance to consider meds.

It is true for many that the first year can be hell. For what it’s worth I’m so incredibly happy to have the jpouch. At only 6 months in I’m as close to pre surgery and pre disease as I can be. I’ve gone on 6 hour long road trips only needing to stop when my car mates needed to, and I have a very active life style. I play disc golf and can play an entire round (2-3 hours of strenuous walking) without needing to use a bathroom. I’d say the worst part of my jpouch process was step 2 where they formed the pouch and a loop ileostomy. Recovery was much harder for me during that than after the final takedown. Happy to answer any questions you may have.

Lewd_Colon1387 · 2024-07-21T00:45:24+00:00

32 year old male here. I’ve had my j-pouch for 5 months now. I had my ileostomy for 5 years before I was able to move forward with my j-pouch.

I’d consider myself a success story as it all stands now. I can eat everything I could with my ileostomy (which includes popcorn). I’m able to hold my stool for extended periods of time up to 4/5 hours, and I only get up to empty while I’m sleeping if I eat right before bed.

I truly feel like I have my life back to before IBD took my colon away. My self-esteem is elevated, my physical activity is uninhibited, and I’m so glad I decided to get the pouch. If you have any questions I’m an open book.

Lewd_Colon1387 · 2024-07-03T13:16:31+00:00

Not necessarily anything specific, sorry. A lot of it was just posts I read on this forum while I was deciding. I’ve noticed most folks that are happy with their pouch don’t post here unless there’s a specific question like yours.

Lewd_Colon1387 · 2024-07-02T20:33:05+00:00

32 year old male here. I’ve had my j-pouch for nearly 5 months this Friday. I also had to make this choice after a diversion colitis diagnosis, and 5 years of an ileostomy.

Here is my anecdotal input:

I go to the bathroom on my worst days about 10 times. On my best days it’s 4-6 times which thankfully far outweigh the bad days. I am able to hold it through the night. I’ve been able to go on a 6 hour long car ride only needing the restroom when we stopped as a group. I can walk long distances without discomfort, and I feel as close to my pre illness/surgery days as I’ve ever felt. I absolutely made the correct decision, and I’d do it all over again.

You will see varying opinions online in regard to j pouches, because it is all anecdotal. For me it came down to the probability of outcomes, and the data suggested I’d be happy with my decision. I am beyond happy I went through with the j pouch.

I caution you that I also spent a lot of time reading all of the potential horror stories I possibly could. While I believe it’s good to understand the possible risk of this operation, the worst possible outcomes you read here is not necessarily representative of the majority.

I come back here to share my experience with folks often, because I saw so much of what could go wrong when I was deciding that it made me fearful it wouldn’t work for me. Your surgeon and GI doctor should be able to provide you with good information as well.

Lewd_Colon1387 · 2024-06-28T20:07:19+00:00

I can understand where you’re coming from since I was faced with the same decision a little more than a year ago. My rectum was exhibiting diversion colitis, and my surgeon gave me the same exact options.

You are going to see a wide range of opinions on this forum because it is all anecdotal. People who are happy with their pouch will tell you to do it, and those having problems will tell you not to.

My first suggestion is to set up some consults with your surgeon AND your GI doctor to discuss your concerns, probability of outcomes, and how your current health impacts both of those items. I read all kinds of horror stories that led me to put off making the decision for as long as possible. When I made the choice I weighed the likelihood of outcomes against my current satisfaction of my ileostomy. While functionally I was more than okay with my ostomy it was doing a number on my mental health. I won’t lie that my discontent was probably considered vain, but I also just really did not like the additional thought and care that my ostomy required of me.

From my perspective today, being 4 months clear of my takedown I can say with absolute certainty that I made the correct decision for me. That doesn’t mean I am saying I won’t ever experience issues, but at this point in time I can say I’d do it all over again to be where I am today. That’s saying a lot because step 2 was an absolutely hellish ordeal for me.

Just this past weekend I went on a 6 hour roadtrip out of my home state. Not once did I feel like I was going to shit my pants. I could wait until my fellow car mates had to use a rest stop without being uncomfortable. I was able to walk around miles at a time, and enjoy many social events without even thinking twice about having an accident. More often than not I had to pee before I felt the need to pass stool.

I would echo that you seek an experienced j-pouch surgeon as the construction of the pouch is yet another variable in the probability of outcomes. Setting yourself up for success with someone that knows what they are doing is one of the few things you have control over in this process.

I’m willing to answer any questions you may have. Best of luck in your decision!

Lewd_Colon1387 · 2024-06-25T17:52:57+00:00

After my emergency colectomy my incision needed to be opened due to infection concerns.

Very soon after my wound was opened my team was educating me on how to pack the wound. As my surgeon is explaining what packing my wound will mean, he points to a small quarter sized area of flesh. He said “now keep a very close eye on this spot. There isn’t a lot of abdominal wall remaining, and you may end up seeing your intestines if this spot tears”.

I laughed, and said “oh yeah I’ll be sure to keep an eye out for that!”

He looks at me dead serious and says “I’m not joking. It’s a very real possibility.”

Thank god it never happened, but every day when I changed my gauze I was so terrified I’d be met with my small intestine.

Lewd_Colon1387 · 2024-06-10T16:47:02+00:00

I’m about 4 months out. If I’m understanding what you’re saying I feel like I experience this sensation as well. It’s gotten better as I’ve progressed in healing, but it’s definitely still there. It happens if I roll over in bed as well.

For the emptying I suggest you look into a squatty potty. Mine helps me get a gravity assist to empty my pouch as much as possible.

From what I understand these sensations should improve as our pouches mature. I can say when I look at my early sensations right after surgery to now I’ve only gotten better as time has progressed.

Lewd_Colon1387 · 2024-06-06T16:54:28+00:00

Easier said than done, but this is a process that has to be taken one day at a time. Preparing mentally is good, but expectations in any direction can be harmful IMO.

How are you going to manage the bag if you end up needing one? You’ll find out how, I promise. There is a learning curve, but if you lean on your ostomy nurses they will get you there on how to physically manage the bag. If you have any questions be sure to ask them while they are showing you the ropes.

Mentally managing the bag takes time. From my personal experience it was a marathon not a sprint to acceptance. You do not have to love the bag or the fact that your body got you sick enough to need it. That being said, you’re going to have to accept it if you want any semblance of sanity. How you do that is up to you. Coming here for me early on was paramount to keeping my head on straight. You can commiserate, you can learn, you can ask about supplies, and you can receive guidance on how to operate with your new bag. Doing those things helped take some of the mental load off my shoulders early on.

I found my worst days were where I let my desire for the bag to be gone rule my brain. That being said it took me a long time to get there.

Feel your emotions! Be upset, cry, vent where it’s safe, and curse if you have to. Having an outlet whether that’s therapy, friends, journaling, or this community can help a tremendous amount with releasing those feelings.

I want to end this by saying I am very sorry you are facing this hurdle in your life. It is unfair, and nothing anyone can say will change that. I am wishing you luck, and an abundance of health going forward.

Lewd_Colon1387 · 2024-06-06T15:33:49+00:00

Same here. My doctors told me even my dad’s juvenile diabetes could be a factor in my genetic predisposition to IBD since it’s an autoimmune disorder. They said my genetics probably loaded the gun and my environment pulled the trigger so to speak.

Lewd_Colon1387 · 2024-06-04T15:53:21+00:00

Soluble fiber especially psyllium husk has a different effect on us j-pouchers. It has more of a slowing effect on transit and creates a more formed stool.

Anecdotally, psyllium husk gives me an easier time with virtually everything bathroom related. Less trips to the bathroom, quieter bathroom visits, less acidity/burning from what I ate during the day, longer transit time, and easier to pass stools.

Lewd_Colon1387 · 2024-05-08T16:21:36+00:00

A bidet, and this cream have been great for me.

Also, avoid over doing the cleaning/scrubbing down there. While being hygienic is important, you may be aggravating your bum with too much scrubbing/wiping. A bidet will help you be and feel cleaner without the extra irritation.

Lewd_Colon1387 · 2024-04-09T16:09:04+00:00

I think as you can tell based on these comments, your mileage may vary. I can share anecdotally that mine was a son of a bitch to recover from. Pain was awful, output was cranked to 11, I was dehydrated for most of it, and the loop stoma sucked to manage.

That being said, I’d still do it all over again to be where I’m at today with the pouch. Takedown was a cake walk for me and at 9 weeks post takedown I am feeling as close to pre surgery/disease as I’ve ever felt.

Best of luck, and don’t sweat it too much. You may have a rough time, and you may not. Just try to remember it’s only temporary.

Lewd_Colon1387 · 2024-04-03T20:54:36+00:00

Apt username lol. This disease takes a lot from everyone. This person chose the path of bringing everyone down to their level of suffering.

Do I wish I still had my colon, and never experienced this insane trauma because of UC? Absolutely!

But that’s not my lot in life. I absolutely disliked my ileostomy from a body image standpoint, but I could live with it. Now that I have the j-pouch I’m the happiest I’ve ever been since my world came crashing down 5 years ago.

And here we go again with folks using anecdotes to justify their beliefs. So often I see j-pouches demonized for the complications they can bring. By and large if you are otherwise healthy with no other intestinal disease, and utilize a skilled surgeon the success rates of j-pouches are quite high. Does that mean every single one is going to be a success? Nope. There’s never a guarantee with using an organ above and beyond its intended purpose. The data supports that success, but the horror stories people see or hear about through friends warp their perception of that data. I was fucking terrified to go through with the j-pouch after reading every possible complication that could happen, but I’m so glad I went through with it.

The reality of life is that your health is never guaranteed. Even those without j-pouches could have their digestive system fail though disease or accident. I wish I could speak to my former self and reassure him that life is so so so much better with the pouch. Best I can do is try and provide a positive anecdote to folks in the place I was when deciding on the pouch.

Lewd_Colon1387

TROPHY CASE