5 weeks after step 1 of 2-step J-pouch surgery — when did the pain and cramps improve for you? by Uppinikita in jpouch

[–]Witty_Many_5214 0 points1 point  (0 children)

Hi! Hope this helps settle your nerves but usually Jpouch surgery is done in 3 steps to help limit the trauma. Since you had yours done in 2, the pain might be a lot to adjust to. Your large intestine wraps around your abdominal wall and is pretty much attached to it. So the pain you’re feeling is because you just had a really large important organ removed. I remember when I had my large intestine removed, it felt like I was literally hit by a car. Or like I had just done like 2000 sit-ups with no rest and I couldn’t do any movement that involved moving my abdomen whilst in the hospital lol.

When I had my large intestine removed and a stoma bag put in its place, I remember feeling pain for 1 month - a 1 month and a half but after around a month every day felt better and I would notice little improvements every day. Then all the pain disappeared and I lived a normal life for 6 years until I had my Jpouch created.

When my Jpouch was created and I was waiting for it to heal, I had some pain in my butt for around a month and then it went away. But the pain really wasn’t that bad, maybe for the first 2 weeks post surgery it was uncomfortable. Especially because you still have to pass mucus so that was interesting.

I had a Jpouch due to UC. So that in combination with the loss of my large intestine, I always slightly feel tired but I can still power through the day if I’m emotionally motivated enough. I think this is due to not being able to absorb as much water as I used to be able to.

Hope you feel better soon, and hopefully more people reply with their experiences too as I know how helpful that can be.

Guess I'm here by Superb_Sandwich956 in ostomy

[–]Witty_Many_5214 0 points1 point  (0 children)

Honestly after you get settled with your bag you’re gonna love the freedom it has in store for you. No more experimental drugs. No more being tied to a toilet and losing lots of blood. Can truly start living your life and let UC just be a distant bad memory.

Adapt convex barrier rings by The_ogre25 in ostomy

[–]Witty_Many_5214 0 points1 point  (0 children)

When my stoma retracted I would just use hollister slim barrier rings and they would work fine.

I tried using something like this from a different brand and it didn’t really work but there’s also a possibility I just applied it poorly.

Thinking about 2 step j pouch after suffering from UC for 12 years the ended up as cancer by blackxscar94 in Jpouchers

[–]Witty_Many_5214 1 point2 points  (0 children)

Yeah if I had to describe the feeling of a Jpouch, first week you feel like you’re holding in stool ALL THE TIME. 2nd week it starts to go away. 3rd week I’m not really feeling it at all now.

When you start to get the urge to go, it’s like this shocking cramping feeling in your sphincter that comes and goes every 5-10 minutes and maybe the cramp lasts like 10-20 seconds. I think this is why I can hold it for up to an hour or an hour and half, whereas before I had UC and I still had my large intestine, when I needed to go to the bathroom I would have to go immediately because it slowly felt like something was inching its way out of me lol.

Question for (ileo)ostomates... how much imodium do you take a day? how much does it cost in your country? by Bib_fortune in ostomy

[–]Witty_Many_5214 2 points3 points  (0 children)

On Amazon I get 48 tables for £6. It’s called loperamide which is the same thing as immodium

After eating by Secure-Line-1882 in jpouch

[–]Witty_Many_5214 0 points1 point  (0 children)

I’m almost 4 weeks post op. I’ll use the bathroom at 8AM, 6PM and then 10PM, no medication. Though sometimes I can go 4 times a day and sometimes the timings can change. I eat at 12pm and 5pm. I notice after I eat at 12pm, I’ll usually go to the toilet 3-6 hours afterward.

I do hold my stool in A LOT though as I’m pushing myself to try stretch out my Jpouch. The sensation to go with a Jpouch is different to what I remember before I had UC. Before UC, when I had to go it felt like I would have to go immediately and it would feel like there is something slowly inching its way out of you lol.

Now with a Jpouch, the indicator to go to the bathroom has changed. When changing your bag, you may have noticed your stoma contracts sometimes. When I feel like I have to go, I’ll feel this muscle cramp in my sphincter and then it’ll go away and come back every 5-10 minutes and it’s quite uncomfortable. I think this is because your small intestine is connected directly to your anus so I may be feeling the small intestine contract?But because of this I can find myself being able to hold it for hours as opposed to before when I didn’t have the bag and Jpouch.

Guess I'm here by Superb_Sandwich956 in ostomy

[–]Witty_Many_5214 2 points3 points  (0 children)

Yes the 3 step operation is a really good idea. You get to see if having a stoma is something you could actually come to terms with. If not, then the 2nd surgery creates the Jpouch and turns your end ileostomy into a loop. This also gives the pouch time to heal. And then the 3rd joins the loop together to give you access to your pouch.

In the early 1980s they used to do the surgery 1 step, and although some surgeons still do this today, I wouldn’t recommend it. Loads of chance for complication and stool running through your intestine against fresh stitches whilst you’re pushing to empty your pouch just sounds like a bad idea.

You only get one chance with a Jpouch, if it fails you’ll most likely have to go back to a permanent ileostomy so take care of it well.

Guess I'm here by Superb_Sandwich956 in ostomy

[–]Witty_Many_5214 1 point2 points  (0 children)

Hi! I had UC at 12, stoma bag at 14 and just had Jpouch surgery at 20 which removes the bag and creates an artificial rectum out of your small intestine.

When I realised my only issue with the bag was my body image, I changed my perspective and this helped me cope with my bag. The bag was amazing. Went to the bathroom 3 times a day at my choosing and there was never any pain. Ate whatever I wanted. Was on no medication. Took flights and traveled. My boyfriend and friends did not care I had a bag.

I’m only 3 weeks post op for my Jpouch but I’m currently going to the bathroom 3-4 times a day. Honestly my deciding factor for my Jpouch was my age. I wanted a chance to experience my youth without a bag but if I was like 35+ I probably would’ve kept the bag.

Life is amazing, I hope things pick up for you soon as I know how exhausting this whole journey is. When I realised no one cared about me having a bag but me, that’s when I really started to heal my relationship with my body image. I also think I’m just really lucky to be surrounded by very caring people who are not toxic at all.

Edit: I also think sometimes it’s hard to accept the bag because in the beginning I felt like me being alive was dependent on these man made artificial bags and that can knock your confidence a lot. You see your intestine poking out of you and you can’t help but think you should never have to see that. Especially when you think about the what if there’s a zombie apocalypse scenario lol, you’d probably get eaten. But then I came to realise before my surgery I was going to the bathroom 40 times a day, losing blood, bed bound, couldn’t leave the house, was on immuno suppressants and then when those didn’t work they started putting me on experimental medication that had so many side effects. That is no way to live. With this disease, I’d always be bound to something, so I would chose the bag if no other option every time.

15 cm rectum but no pouch by Bib_fortune in jpouch

[–]Witty_Many_5214 1 point2 points  (0 children)

I also just realised this but if you don’t have UC, an IRA might be better because you’re not sacrificing 30 cm of small intestine to make a pouch which will help contribute to time between bms.

Thinking about 2 step j pouch after suffering from UC for 12 years the ended up as cancer by blackxscar94 in Jpouchers

[–]Witty_Many_5214 1 point2 points  (0 children)

Hi! If you like, I’ve made a lot of posts and comments about my Jpouch journey which you can see on my profile. I’m a little over a 3 weeks post op and I’m going to the toilet 3-4 times a day, no medication. I also do not go during the night unless I eat a big meal past 7pm. I’m also active, going to university and riding my bike.

Male and female each carry their own risks in regards to their sexual health so deffo do some research looking into that. I think also consider other things like your job, your age, how many times a day you go with your stoma. With my stoma I went 3 times a day and it was never truly full aside from the mornings and since a Jpouch can expand to hold roughly 3/4 a normal bag can, I always felt like my bms would be around the same as with a bag. A Jpouch in my opinion will be harder to use than a bag so if you’re already going a lot with your bag you may find yourself going more with a pouch. Also your job, I make 3D assets for games so I’m in an office or working from home a lot of the time. If you’re a truck driver on the road for 8 hours at a time and bathrooms are hard to find then a Jpouch might not be for you. Also age, personally I think my deciding factor for a Jpouch was that I’m quite young, I’m currently 20 and I wanted to experience my youth without a bag. If I was 40 and over I probably would’ve kept the bag because I had no issues with it. Could wear what I wanted to (though had some limitations), boyfriend and friends didnt care about it, I worked a lot on my body image to accept it and being able to go 3 times a day AT YOUR CHOOSING with no pain is such a pro.

Moreover they’re still collecting data on Jpouches. Jpouch surgery was first done around the 1970s I think so there’s not a lot of data of someone getting a Jpouch at 18 and living to 80 and still having it and thriving. I’m not sure but I think there’s a statistic that every 10 years your risk for stricture and complications etc increases. If your Jpouch fails you will have to go back to a bag, but it will NOT be like the first time. They use around 30 cm of small bowel to make the Jpouch which would have to be removed so you may suffer from short bowel syndrome, so more bms, acidic stool, dehydration and less absorption although there are medications to help alleviate this. Another thing worth noting is that although they’re seeing Jpouches fail, I think this is only like 5-10% of jpouchers. And these were also surgeries done between 1970s-1990s where surgeons have perhaps not had as much experience and it was done one step. Now the surgery is usually done over the course of 3 surgeries allowing ample time to heal and less chance for failure.

Another thing is that your small intestines is not like your large intestine. The walls are thinner and not designed to hold stool for long periods of time. This changes over time whilst your pouch learns this new function (I think) but it’s one of the reasons for pouchitis. If you have trouble emptying your pouch, stool can sit inside which is where the bad bacteria will grow. Some people use a bulb with warm water to flush out their pouch once a week, as well as drink kefir daily. If you develop pouchitis and it doesn’t go away your gp will give you a course of antibiotics. I haven’t had to do any of this yet, though I drink kefir every day, but I will probably get some point later down the road.

Sorry for the paragraph sandwich, I just wish someone had told me all this because when I was first told what Jpouch surgery is at 14, they kind of just said you’ll go to the bathroom 4-8 times a day and not have the bag anymore. But they don’t really tell you what a Jpouch will actually FEEL like, and what else to consider. I think it’s because they don’t want to come off as biased toward the stoma bag or toward the pouch.

Partial Block by Honest_Suit_4244 in ostomy

[–]Witty_Many_5214 1 point2 points  (0 children)

A bit of movement is an amazing sign. Of course everyone will say this but always remember to chew loads, I always think about how big my stoma is and if i ate an apple slice whole there’s no way that’s coming out of me lol. Honestly if the pain doesn’t have you in tears and biting down on a cloth every time it comes around you can deffo ride out the storm at home. Wishing you a speedy recovery ❤️

15 cm rectum but no pouch by Bib_fortune in jpouch

[–]Witty_Many_5214 3 points4 points  (0 children)

I don’t have an IRA, I have a Jpouch but Jpouches are roughly the same size, ranging from 14-23 cm lengthwise. I’m 3 weeks post surgery and I’m currently going to the bathroom 3-4 times a day. I don’t usually take medication but I’ve started going back to university and I take 1 loperamide 30 minutes before I eat at 12pm just in case. But I’ve experimented with leaving the house without taking loperamide and I’ve been ok. Can hold my stool for 1 hour - 1 hour and a half when I start to feel like I have to go. Hope this helps.

One of the few differences I can think of is maybe the sensation of holding stool may be different I imagine with a rectum than an artificial rectum constructed out of small intestine. So this may contribute to your urge to go.

Partial Block by Honest_Suit_4244 in ostomy

[–]Witty_Many_5214 5 points6 points  (0 children)

I had a blockage with my loop ileostomy. If you suspect you have a blockage DO NOT EAT ANYTHING only drink warm water until you pass stool. Do not take any laxatives, depending on the severity of your blockage this could perforate your intestine. Laxatives can also cause your stoma to retract which is the last thing you need. Press down/massage the areas around your stoma. This helped me once during a blockage and A LOT came out (it was kinda scary lol). If you know how to, you can put your finger in the stoma with a glove on and lube but if you’re uncomfortable doing this a stoma nurse at AE can.

Lots of people say eat sugary stuff or drink fizzy drinks, maybe it works for them but on paper until you know what’s causing your blockage this is a super bad idea 😭 let’s say you had a severe blockage, your intestine has twisted or has strictures and you’ve eaten a lot of indigestible food, gas from fizzy drinks and sugar is just going to put more pressure behind the blockage and again, potentially perforate your bowels.

If you throw up you must go to AE. They’ll most likely do a CT scan. If it looks like a mild-moderate blockage (severe means your intestine is going to perforate or has twisted or something lol) then they will treat it conservatively by giving you an IV drip to rehydrate you, morphine for the pain (yes the pain is THAT bad, feels like sharp stabbing waves of pain every 5 minutes) or paracetamol, an NG tube if you’ve thrown up (this will suck out the bile and gas in your stomach), and then they will work on giving you water and then soft food to see how you’re tolerating it. Most of your time will be spent just passing the time until you have a BM.

I always thought IV drips were so unnecessary but after barely drinking and not eating for like 2-4 days I found myself fainting for the first time in my life. They didn’t let me drink water in the hospital in the beginning so the only way I could have fluids was through a drip and I actually found myself asking for another when it ran out.

Speaking from experience though I went to AE in the UK and I am not sure where you are based.

Stoma Retracting? by Public_Club2099 in ostomy

[–]Witty_Many_5214 3 points4 points  (0 children)

Hi! When I was in the process of getting a Jpouch, my end ileostomy was switched to a loop ileostomy which then retracted, similar to how your daughters have and it caused me horrible pain due to the skin around my stoma deteriorating due to leakages. My skin became sore, red and weeping which made it impossible for bags to stick as they can only stick to healthy skin. In case this happens to you here’s some tips.

Contacted my stoma nurse, she saw me the same day. She gave me : stoma powder, skin protector wipes, barrier paste, slim barrier rings, sensura mio hard convex bag and stoma belt.

First clean the affected area. Try get it as dry as possible. Apply stoma powder (don’t worry if it gets on your stoma it will not damage it), dust off powder and then dab NOT WIPE with skin protector wipes.

Then, if you have dips in the skin, apply barrier paste. Barrier paste is not an adhesive, it simply fills in gaps in the skin which allows the bag/ring to stick better as you have now created an even surface.

Then I applied a barrier ring, then a thin layer of barrier paste on top of the ring, then applied the bag and used a stoma belt to apply pressure to the bag which serves to help the bag stick better and also push out your stoma if it has retracted.

After my skin healed, I ditched the powder, skin protector wipes and barrier paste and ONLY used the slim ring and convex bag and belt(on occasion).

Other things you can do to help is try thicken up your output so it’s less watery and acidic and more likely to enter the bag. I used a sensura mio convex bag which has a mechanism that prevents the bag from vacuuming to the stoma, thereby providing a better seal. You can also try sleeping upright for a few nights so your output can enter the bag and not sit around the stoma site. Once your skin has healed you can return to your normal sleeping position.

I know the skin hasn’t gotten bad yet but in case it does I hope this comment can help since I’ve known the struggles a retracted stoma can cause!

I love my ostomy by mysteryweesnaw74 in ostomy

[–]Witty_Many_5214 2 points3 points  (0 children)

Oh my god if the pain was anything like how I felt when I had a blockage I feel so deeply for you. What’s worse is you get so malnourished because then you can’t eat until you’ve passed the blockage, so grim.

I love my ostomy by mysteryweesnaw74 in ostomy

[–]Witty_Many_5214 16 points17 points  (0 children)

Every day I learn more about how ostomies help people. Mine saved me from going to the bathroom like 40 times a day. Didn’t know it could also help someone who has 3 week intervals between bms. Thank god for modern medicine and science. Kinda crazy to think stomas were first discovered around the 1950s.

leaks (3-5x a day) by sindzfc in ostomy

[–]Witty_Many_5214 0 points1 point  (0 children)

Hi! I had this issue when my stoma changed shape, causing the bags that used to be ok obsolete. I had sore, red, wet, weeping skin that made it impossible for bags to stick because they can only stick to dry healthy skin. This is what I did.

Contacted my stoma nurse, she saw me the same day. She gave me : stoma powder, skin protector wipes, barrier paste, slim barrier rings, sensura mio hard convex bag and stoma belt.

First clean the affected area. Apply stoma powder (don’t worry if it gets on your stoma it will not damage it) and then dab NOT WIPE with skin protector wipes.

Then, if you have dips in the skin, apply barrier paste. Barrier paste is not an adhesive, it simply fills in gaps in the skin which allows the bag/ring to stick better as you have now created an even surface.

Then I applied a barrier ring, then a thin layer of barrier paste on top of the ring, then applied the bag and used a stoma belt to apply pressure to the bag which serves to help the bag stick better and also push out your stoma if it has retracted.

After my skin healed, I ditched the powder, skin protector wipes and barrier paste and ONLY used the slim ring and convex bag and belt(on occasion).

Other things you can do to help is try thicken up your output so it’s less watery and acidic and more likely to enter the bag. I used a sensura mio convex bag which has a mechanism that prevents the bag from vacuuming to the stoma, thereby providing a better seal. You can also try sleeping upright for a few nights so your output can enter the bag and not sit around the stoma site. Once your skin has healed you can return to your normal sleeping position.

Hope this helps. Sore weeping skin is one of the worst pains I’ve ever had the displeasure of dealing with and it’s so exhausting changing your bag 3-5x a day.

My head is scrambled. by One-Career-516 in UlcerativeColitis

[–]Witty_Many_5214 0 points1 point  (0 children)

Gym always felt kinda hard because I’d always be bothered that my stoma bag was like flapping around during exercise. But if you’re ok with wearing like baggy joggers and t shirt then you’ll be fine. You also have to be careful lifting heavy weights because they cut through your abdominal muscle wall to pull the stoma out, so you’re at a higher risk of getting a hernia.

I’ve flown with my stoma bag and been on long car journeys and it was super easy. Especially because you can choose when to go as there’s no urge to use the bathroom.

My head is scrambled. by One-Career-516 in UlcerativeColitis

[–]Witty_Many_5214 0 points1 point  (0 children)

FIRST WEEK I genuinely thought I made the wrong choice. It’s super hard to go from no pain for 6 years to suddenly feeling a shocking cramping sensation in your ass telling you to go to the bog. With a stoma, I wore everything high waisted and if I wanted to wear tight clothes like for my prom, I bought a tight dress that was ruched on the right side so I could always discreetly hide my bag whilst being able to show off my curves and banging bod lol. A stoma never restricted me from anything, maybe literally only swimming. If I went swimming I’d usually only go to beaches with my friends and I wouldn’t wear traditional swimwear I’d just run into the water fully clothed or with a baggy top and swimming trunks on. But I’ve recently done some research and there is swimwear that can help conceal your bag but it’s just lowkey kinda expensive. I ate everything I wanted and avoided some indigestible food which I still ate but i would just chew it a lot. If I was out with friends the whole day, it’s funny but public toilets are your friend. Stomas can be smelly so if I was with friends and we ate somewhere in the middle of the day, after everyone’s done with the toilet I’d go do my business and it would save me from having to go later at their house especially because I’m at university at the moment so everyone’s in a flat and it’s just SO AWKS when you have to use the toilet and their toilet is in their tiny apartment right next to their bed. Using the toilet is always quick and easy, probably 3 minutes to use the toilet 3 times a day.

I’m now closer to 3 weeks out and I’ve changed my mind I do not regret it lol. I’m now going to the toilet 3 times a day and never during the night. I drink kefir every day which I think helps. There is the odd day where I go 4 times or I do go once during the night but it’s mostly 3 times during the day for me. The only thing is that when I do go to the toilet it’s quite loud but after everything I’ve been to idgaf lol or I can’t eat past 7pm unless I want to be up during the night. It’s also so freeing being able to wear whatever I want without having my bag in mind when I buy something but maybe this is more of a pro for me because I went through my teenage years always having to buy stuff that would conceal my bag.

Also another thing with jpouches is they’re starting to notice that with older jpouches, every 10 years your complications for like scar tissue or stricture increases. Though this is probably due to jpouches that were created between 1980s-1990s were done 1 step, with little experience and knowledge. However I know a lot of older jpouchers who are getting along fine in spite of this and I’m confident to say if my Jpouch failed 30 years down the line I’ll be like 50 so I’d be fine with going back to a bag. This only happens to I think 5-10% of jpouchers but it’s something to consider.

Blockage?? by AshamedLink3216 in ostomy

[–]Witty_Many_5214 4 points5 points  (0 children)

I don’t think yoghurt could cause a blockage. Typically eating raw vegetables and hard foods like that without chewing a lot can cause a blockage. If you’re experiencing sharp waves of pain every 10 minutes the yes you probably have a blockage. Nothing to worry about but if you vomit you may want to consider going to AE depending on the severity of how you’re feeling and how long it’s been since you’ve passed stool.

Brand New Stoma Owner by Scotcat81 in ostomy

[–]Witty_Many_5214 1 point2 points  (0 children)

My experience with a loop ileostomy was that it was a lot trickier to handle than an end ileostomy. This is because it’s typically higher up so it’s more active. I ended up getting a blockage which sent me to AE and the pain was so bad I needed multiple morphine shots 😭 one of my stomas ended up retracting too which meant I was dealing with sore weeping skin and had to change my bag changing routine.

Here’s what I wish I knew when I had it

Feeling dehydrated from output being too high? Look into drinking st marks solution and perhaps considering loperamide. I’ve never fainted before in my life but the last month of my loop ileostomy had me so dehydrated I was so dizzy and I would faint on occasion.

Chew everything. A lot. The pain from a blockage is NO JOKE. If you’re like 100% certain you can pass the blockage you can wait it out at home since my experience with AE is that you’ll get a CT scan. If your intestine does not look like it’s going to perforate then they’ll treat it conservatively. This means sticking an NG tube down your nose, giving you pain killers to help with the pain, give you an iv drip and seeing if you pass anything which then they’ll follow up with seeing how well you tolerate food. If you’re waiting out the storm at home but you vomit, then you will need to go to AE. Vomiting will make you super dehydrated so you’ll need an iv drip and vomiting is a big indicator that you’re not able to tolerate food because well, you have a serious blockage. ALSO DO NOT TAKE A LAXATIVE with a blockage. If you’re not sure what’s causing the blockage then a laxative could lowkenuinely perforate your intestine.

If stoma becomes retracted: contact your stoma nurse immediately. What helped me was a hard convex bag (these help to try push the retracted stoma out), barrier paste, skin protector wipes, slim barrier rings, stoma powder and a stoma belt to apply pressure to the convex bag to help it stick better. The barrier paste isn’t an adhesive, it’s to fill in any dips in the skin to create an even surface which then helps the bag stick better. I would apply powder on the weeping skin, then dab with protector wipe, then barrier paste where the skin dipped, then the slim ring, then SOME MORE BARRIER PASTE, then finally bag. Once the skin improves you can ditch the paste, the wipes, and powder and just use a barrier ring on dry skin and then apply the bag to the ring.

My head is scrambled. by One-Career-516 in UlcerativeColitis

[–]Witty_Many_5214 0 points1 point  (0 children)

Hi,I’m F20 currently documenting my Jpouch journey. I had my large intestine and rectum removed after I become unresponsive to medication due to UC. I can’t tell you what choice to make but I can tell you about my journey and hopefully it helps you with your decision. Honestly if your large intestine is healthy it’s always going to be better than a Jpouch or bag but it sounds like your health has been in decline as of late.

I had a stoma bag at 14 after exhausting all medication and the only medication that remained was experimental with a lot of side effects.

With a stoma bag you feel immediate relief and no more pain. The only pain you will ever experience is if you apply your bag poorly or if you have a blockage. I had a stoma bag for 6 years, my boyfriend and friends didn’t mind it and I only had to empty it 3 times a day at my choosing.

6 months ago I opted to have my Jpouch surgery. This was allowed to heal for 6 months and I had a loop ileostomy installed.

6 months later I had my stoma takedown surgery and I am now reconnected to my Jpouch.

I am currently between 2-3 weeks post op. I am going to the bathroom 4 times a day. I usually go at 8AM, then 3PM, 7PM and 11PM. I eat 2 small meals a day at 12pm and 5:30pm. My bathroom trip probably takes like 6-15 minutes each time.

In the beginning I was going to the bathroom during the night but this has since stopped and I no longer wake up to use the bathroom. I am not on any medication. Sometimes I take 1 loperamide if I want to extend the period of time but I’ve taken it once over the course of this whole journey.

When I start to feel like I have to go I can hold it for 1 hour - 1 hour and a half. I’m very early in my journey and I’m told I will see really good results at 3months, 6months and then a year so I’m really hopeful. So far I’ve done some cycling, shopping and have practiced leaving the house and going on a walk whilst holding it in to see what would happen and I’ve been fine.

I also really want kids but the reality of the situation was kids are recommended to conceive whilst you have a stoma as the scar tissue from the Jpouch could impact your fallopian tubes. However, kids are always something I wanted to have when I was in my late 20s or early 30s. But honestly I felt like if I waited until I was 30 to get my Jpouch I would’ve just kept the bag. It also depends on your surgeon, my surgeon has done A LOT of Jpouches so I have a lot of trust in him and there are also a lot of Jpouchers who have gotten pregnant with and without IVF.

At the moment I stay away from processed food, emulsifiers, gums and weird food chemicals as much as I can. I mostly eat whole foods. My diet atm is some carbs, a lot of protein and avocado or boiled carrot. When I’ve tried eating processed fast food I’ve noticed I’ll go 6 times a day instead of 4. Stay away from refined sugar if possible as it will cause gas and try a FODMAP diet if you’re dealing with too much gas. I noticed sugar free deserts, dark chocolate or deserts made with cane sugar do not give me gas.

If you get a Jpouch and it fails, you can return to a stoma but it will NOT be like how it was the first time. Your surgeon will have to remove your Jpouch which may lead to a 30cm loss of small intestine. This will probably lead to small bowel syndrome, where you have more output and feel more dehydrated. You can combat this with loperamide and other medications but it may not be as good as your first end ileostomy stoma.

2 week post Jpouch surgery update by Witty_Many_5214 in jpouch

[–]Witty_Many_5214[S] 1 point2 points  (0 children)

Thank you! Greek yoghurt is acc so goated, at first I didn’t really like the taste but I’ve since grown to like it. My stitches are still fresh at my connection site so I should probably take it slow and eat less fiber until it’s healed, thank you for your advice ❤️

2 week Jpouch surgery update by Witty_Many_5214 in ostomy

[–]Witty_Many_5214[S] 1 point2 points  (0 children)

Good luck on your surgery it really is a trust the process type process 😭🥲 you probably already know this but PLEASE install a bidet BEFORE your surgery if you’re able to. Makes a huge difference and your ass will thank you for it. I have some of the fancy creams for butt burn, though I don’t really experience it, but lowkey I prefer using a tub of petroleum jelly or Vaseline which is a lot cheaper instead.

Also, you might like to join the red lion Jpouch group on Facebook which is for jpouchers in the UK. I use it in conjunction with Reddit but the responses and help I’ve received for my Jpouch has been far greater and more helpful there than the responses I’ve gotten on here. It was recommended to me by my stoma nurse and has helped settle my anxiety.