Jpouch vs bag struggle

As some of you know with my recent posts, surgery is the next step for me in this bad flare of mine with no response to any other treatments and no access to a majority of medication because it will conflict with my auto immune hep. I've basically been pointed in the direction of a jpouch automatically, but some connections I've made online with fellow UC/Crohnies have shared the whole "the bag isn't even that bad, I am sticking with it for now" POV. With my huge fears of surgery, I could see myself sticking with the bag to avoid more surgeries/ recovery time as long as I was happy with myself accepting the bag as my new friend on my body(with therapy and some self love, I could definitely see it not being the end of the world!). My question is, say I opt for Jpouch- (mine would be 3-step) and I find my life enjoyable enough after the 1st step with my end ileostomy, Am I able to just stop there? Or if I want to decide on making it permanent, does it require another surgery? This girl online told me she was just "stopping there" but the whole "temporary" word throws me off? Thanks in advance for feedback and answers

With a 3-step procedure, an end ileostomy would be the first step. You can indeed stop there if you are happy with that. An end ileo can be either temporary or permament, whereas a loop ileo is nearly always temporary. If you are thinking of making your end ileo permanent, then make sure it is situated as well as possible. See a stoma nurse a few days before the operation to measure the best position, taking into account your body shape and the type of clothes you wear. In my case the spot was marked with a black marker pen.

Good luck!

I believe the first step is a Temp Loop Ileostomy.They are natoriously problematic and tend to leak because it's hard to fit a wafer on properly . So if you decide to stay with a bag then your stoma will be made into a Permanent End Ileostomy. Google photos of a loop and end Ileostomy and you can see the difference. I have an Permanent End and am happy with it . I have my life back. I have Crohns.

Yes, 07kr5 is correct. If it was a 2-step procedure you'd skip the end ileo and go straight to having a j-pouch with loop ileo. But if the patient is very ill, malnourished and/or on steroids, most surgeons prefer to do a 3-step procedure to give the patient more time to recover. Removing a colon and creating an end ileo is fairly straightforward and doesn't take very long - my first surgery only took an hour. (On the other hand my reversal took 3 hours and I didn't even have a j-pouch done! No complications either, it was just intrinisically a longer, more difficult, surgery.)


My question is, if I was going about it as a jpouch then the stoma they would make would be the "temporary end ileostomy" so if it's temporary how would I be able to stop there and avoid surgeries further?

A 'temporary' end stoma is exactly the same as a 'permanent' end stoma. A loop stoma is actually physically different to the end stoma. It's hard to explain in words, but an end stoma stops at the stomach, whereas a loop stoma continues onto the colon or the j-pouch.

Loop stomas are larger than end ones and have two openings instead of one: the top opening is for stool and the lower opening is for mucus/gas. Temporary loop stomas are used to divert the stool away from an anastomosis (i.e. the surgicial join between two bits of bowel) in order to give it time to heal. I have heard of people having loop stomas for years, but usually they only last for a few weeks or months before being reversed. That's probably because loop stomas in general don't work as well as end ones do: they are harder to manage and more likely to cause leaks.

If a person is going to have a permanent ileostomy, or wants to leave the option open to make it permanent, then an end stoma is preferable to a loop one.


How was your recovery from the first procedure, pain wise, complications, etc.

At first it was really easy. The surgeon had done a good job and I had zero surgical complications. I was up and about, and had a decent appetite, by day 2. Unfortunately something really stupid happened, which in retrospect made things a million times worse than they should have been. On the second night the needle in my back for epidural pain relief worked its way out and I ended up in agony for several hours, because thanks to sheer incompetence and bureaucracy nobody could or would get me any pain relief. Me and my parents complained bitterly to the hospital pharmacist the next day and he put me on oxycodone.

Well I'm from the UK so I hadn't even heard of oxycodone, as naive as that might sound. When I left hospital, my GP took over the prescribing of oxycodone. I had no idea what a high dose I was on (nor, I'm guessing, did my GP). Long story short, I got addicted. At some point I belated realised this and undertook my own taper. The whole process was a nightmare from start to finish. While the acute symptoms were much better after 4-5 days, I was still left with horribly sensitive/itchy/crawly skin, depression and fatigue for a very long time afterwards. I also had prednisolone to get off, another drug my body had become dependent on because I was on it so much before surgery.

So, most of my woes that first year after surgery were compounded by difficult and emotional drug withdrawals, not from any physical complications from the surgery itself. My advice for pain relief after surgery would be to take morphine or oxycodone for a few days only and then transition onto something like Tramadol, and then wean off that as soon as you can.

Just to add to something 07kr5 said about the rectum. You can have that removed during the first surgery, but if you are very ill and/or on steroids your surgeon may wish to delay it - mine did. Apparently rectum removal is a much longer and more delicate procedure than colon removal is. The main problem of keeping the rectum in is that it's liable to develop UC or even diversion colitis. You can't pass stool anymore, but unfortunately you can still pass mucus and blood. And it's a cancer risk as well. You should definitely have a talk with your surgeon about the pros and cons of proctocolectomy surgery (i.e. surgery where both the colon and rectum are removed).

For some reason I didn't get notified I was getting responses to this so sorry for not responding. I understand the difference between the end and the loop, i was just curious if with my temporary end ileostomy, if I wanted to make it permanent and not move forward with the jpouch , if there was something they do to make it permanent but it sounds like they don't. I'm that case where I'm very sick and on steroids so yea I would be doing a 3 step and probably not rectal removal during first surgery just because I'm not 100% sure on what direction I'm going. I understand at some point you would get the rectum removed because disease can still occur there, I just don't really understand why you have to be sewn shut down there as well. Other than passing mucus and blood, it just sounds extremely painful to have your bottom sewn shut . Also sorry to hear about the oxy situation. That is actually ridiculous and it's a real shame that happened during your hospitalization but I'm glad you are ok now and otherwise your surgeries went well.

No worries.

No, there is nothing else they do after the 1st step if you are happy to stay with the stoma. As for being sewn up, if you don't have a rectum and an anus anymore, then I presume it would be a massive infection risk to leave the equivalent of an open wound in your behind. There is one poster on here, Christine1946, who had her rectum removed but didn't get sewn up - the surgeon left her anus in instead. The Crohn's came back there, which has been about as fun as it sounds.

I won't lie: the healing process from a proctocolectomy sounds pretty grim. That part apparently takes a long time to heal. But I'd rather deal with a few months of not being able to sit down than years of untreatable Crohn's in my anus.

I thought her diagnosis had been changed to Crohn's, but now I think about it I can't remember.

Found this fairly recent post (scroll to the end). Looks like you were right, but it was probably the fistula which threw me off track: /www.healingwell.com/community/default.aspx?f=33&m=3871157

Yea thanks so much for replying! Definitely helpful. What about the recovery process for that first surgery, how was that, pain wise, etc. Mine would be laparoscopic,mind sharing your first procedure experience?