Does anyone still visit this forum? I'm having surgery

If anyone remembers me, feel free to pop in and say hello.

Anyway, I'm having surgery on the 23rd August. It's my third and, I hope, final one. Had my colon removed in 2013 and a reversal of my stoma in 2015. This will be to remove my rectum and give me a new, permanent ileostomy. I didn't realise how good I had it with my first stoma and I should never have had it reversed, because my bowels ever since then have sucked - bathroom visits 10-20x a day, tenesmus, urgency, excruciating butt burn, itching, etc. It's just so much easier emptying a bag a few times a day. At the moment going out anywhere is fraught because I never know when I'll need the bathroom.

So yeah. Not looking forward to the long recovery all over again, but I am looking forward to being on the other side of it.

Hi Miranda,

I too am very sorry for what you're going through. You've been through so much already, and let's all just hope and pray that this will be the last leg of the journey to the "other side" as you put it.

Please keep us all posted, stay positive and take it one day at a time.

Thank you everyone!

I definitely will update. I might have to wait until I get home, unless my hospital has put wifi in the wards since the last time I had surgery, which I doubt. (I do have data, but my 4G reception is absolutely dire. I'll be changing my phone network when I get a new phone, that's for sure...) But I will definitely let you know how the surgery went.

I'm seeing the stoma nurse tomorrow to get measured up for a stoma. That should actually be pretty easy since I've still got the scar from my old stoma, lol. I haven't really changed shape or size since then, so I'll probably just stick with the old location - I'd say it was about right.

Hope you're all doing well.

@DC - I'm happy to share. Six years is a long time to have a loop stoma, but I can see from your signature why reversal wasn't on the cards. Fistulising disease sucks. I thought I had a better prognosis because I didn't have fistulising disease. But the Crohn's quickly spread to my rectum and caused the symptoms I described in my first post. Two biologics (Entyvio and Stelara) didn't really help and so here I am. At any rate, I've never had a loop stoma so I can't directly compare, but I have read that end stomas tend to be easier to manage than loop ones. If you do have any issues with your current stoma, hopefully they'll be resolved with an end ileo.

NCOT
Wishing you best of luck. You have been through a lot lately and hope things will be better “on the other side”. Praying for you.

@minnietoty and beave - Thank you both.

@Clo - I had my stoma surgery done in 2015 too. The surgeon didn't remove my rectum for two reasons: 1) I was stuck on a high dose of pred that I couldn't taper down from, so she wanted to keep the operation as short and simple as possible; 2) to leave open the possibility of reconnection. Well it worked and I had a straightforward physical recovery - or would have done if oxycodone hadn't profoundly messed me up for months (that's another story...). The mental recovery was a million times more difficult and I never really accepted the stoma. In fact I hated it. I envied j-pouch patients but I don't anymore: I'm ready to go back to a stoma and this time I'm not going to resent it. In fact if it works as well as the first one did, I will be immensely grateful.

I'd love to read that article. I've had Crohn's for 22 years and I feel like I was at my physically healthiest for the two years I had the stoma. I will see if I can find it; if not that exact article then something similar. Everyone goes on about the gut microbiome, and how crucial it is to health, whilst ignoring the fact that there is a subset of the population with hardly any gut bacteria at all - ileostomates. (Presumably there is a small amount of bacteria in the small bowel but there can't be too much otherwise you'd get SIBO.)

The stoma is going to be in the same place it was before - it's been inked in with a marker pen.

I hope the fixing of your hernias goes well and you can have your own barbie butt done soon. I'll be quite happy to never, ever feel another urge to go to the toilet again. Rectum? More like wrecked 'em >_>.

Hi Dorri, I remember you too! How's the Crohn's nowadays? Thank you for your good wishes. I'm in hospital but still waiting for surgery - it's 9am and I've been here since 7am. Really, really tired now so I do hope it's not too much longer. Especially as I can't even have a cup of tea >_<.

I'm looking forward to never experiencing another urge to go the toilet, ever again. I don't mind the occasional urgency but for me it was daily and unrelenting.

HI Miranda I hope it all went well

I forgot to ask....

Right after surgery did you feel better? I know that Keth did, and I have each time they removed the diseased portion of my colon. The pain is sorta overwhelming but there was just this moment when I knew I just felt better.

Thinking of you. Hope you are doing well.

Clo

Could you have lost lots of blood during surgery, maybe you need a blood transfusion?. If you were actively running to the washroom before surgery, maybe you did wash out your iron stores? We don't realize just how much we lose, but it becomes cumulative? I was only given one iron infusion but several blood transfusions. That's how much I was pouring out before? As much as I think that Entyvio isn't helping, I never had to have another transfusion, since I started it and my haemoglobin has come way up into the normal range, I still have to look for washrooms, and was told that won't change because they took too much intestine, so now I'm on
Imodium, which to me isn't all that ideal either, but I best stop complaining? I really do wish you the best with your brand new stoma and enjoy, now you have some control back, and can go to the stores and shop around and have coffee and enjoy, instead of looking for the nearest washrooms? You're doing great, keep up the good work and soon you'll be dancing and all healed up and like new!.

Post Edited (dorri) : 9/1/2022 11:27:46 PM (GMT-7)

NCOT, that number is still low enough to make you feel like crap?. I hope it comes up for you real soon? Mind you, taking anything like iron pills right now to bring up the scores may constipate you, and that may not be good for your stoma and output right now while you are healing? There is no reason why you can't have a B-12 injection now and it shouldn't interfere with anything? You may have to get in your iron through diet? Eat well, rest tons.
Hugs
.dorri

Dorri - Yeah, 10 is low enough to give me symptoms of anaemia (breathlessness upon exertion, restless legs, tiredness), although at the moment I can't tell what's anaemia and what's post surgery malaise. I'm still struggling with pain (although it's mostly only really bad at night now) and with walking - I can't walk fast or for long distances.

I've never been able to tolerate oral iron for long. The only things I've found which I can tolerate are iron sprays and iron patches, but even the sprays have their issues. The iron patches have zero issues but they are very expensive and I'm not sure if they work.

I deffo want to try a B12 injection but the NHS requires you to be ridiculously low in B12 before it will consider injections. I am considering buying injectable B12 online but I'll wait until my next blood test before deciding.

PS: it's almost impossible to raise iron levels through diet alone :/ I'm a meat eater; I have light periods; and I very rarely saw visible blood in my stools. But I still cannot hold onto iron for the life of me.

Nicky - I'm glad surgery worked so well for you. Sometimes it really is the only thing which works. Long may you remain in remission.

I'm so glad to hear it all went well NCOT!!

Wishing you loads of well wishes and hope you are getting stronger and stronger each day.

Take care of yourself
Hugs

dorri