Ileostomy questions

[Clo23]

I was wondering if anyone could answer any questions that I have. Nothing too serious just some random questions. I have been told by the surgeons that I might be having ostomy surgery. That is all I was told, I have done a lot of research but I am currently waiting on a call from my Gastroenterologist just to discuss anything. I have been given no information at all and basically told to wait, I don't even know if I am getting this surgery yet but as its a big life change, obviously I have some questions and nobody seems to want to give me any information at my hospital. As I have been waiting for any news for nearly 3 weeks I thought I would come on here and hopefully learn more about what may soon be happening to me.

When someone has an ileostomy does it either have to be reversed or made permanent? If at first they don't remove your colon, I know its possible to reverse it but is the only option other than reversal, having your colon and rectum removed? I haven't been able to find a definitive answer to this anywhere.

When a person has ileostomy surgery to create a temporary loop or end ileostomy, does that person need to have a drain right after surgery?

I don't even know if I would be getting an ileostomy or colostomy, the way the surgeon was speaking pointed to an ileostomy but I am still unsure. I have seen quite a few people on YouTube with ileostomy surgery recovery but not a lot about colostomy surgery. I wondered if there was a big difference in recovery or the surgery in general? I know they are obviously different but I wasn't sure if one was 'worse' etc.

I am sorry for all my questions and if no one can answer them its entirely fine. I just feel like I am going a little insane with not knowing anything. I feel a bit like I am too obsessed with it but then again its a life changing surgery, I know it might not be a big deal to the hospital but i have been ill for over a decade and having this surgery could finally mean I can leave the house comfortably for the first time in about 4 years. I'm 24 and just want my life back.

[Peter_Plymouth]

Hi Clo23 - I can see that this is a worrying time for you. In terms of providing any answers to your questions I don’t think I can help. These are all questions for your Gastro team. You don’t say why you need the surgery?

The solution that you and your Gastro team decide on will be the best for you and your current state of health. I don’t think one surgery is better or worse in terms of recovery. If they are offering you a loop ileostomy then they obviously think the large bowel will recover if rested. A loop ileostomy is reversible after recovery which would be in terms of months. If you have any kind of surgery that requires an ileostomy then you will have a drainage bag straight after surgery - this is a given.

I had an ileostomy about 6 months ago - in my case there was no option of reversal as part of the surgery was a sub-total colectomy, almost all my large bowel and colon had to be removed. It is a dramatic change but your surgeons would not be considering it unless it will bring you a better quality of life.

The best advice I can give is talk to your team, ask all the questions you have and don’t let them proceed until you understand all the options and outcomes. I assume, from the way you present your question that this is going to be elective surgery so you have time to ask the questions and be happy with the answers. Be positive with the surgeons and tell them you need them to explain the options and the pros and cons of each solution.

I hope you get the answers you need - it is your right to understand what is being done and you are free to ask as many questions as it takes for you to be informed. Good luck and let us know how your next appointment goes.

Best wishes - Peter

[Clo23 in reply to Peter_Plymouth]

Thank you for your response! I don't think it would be a loop ileostomy because I can't imagine I would ever have it reversed. They don't currently know what the problem is and I've been under the gastro team for about 4 years. I have tried so many medications and I think this is the last resort but there hasn't been a lot of communication so I am really not sure what's going to happen. The problem I have is chronic diarrhoea, which is so bad that I can no longer leave my house. Its been a problem for over a decade but over the last 3-4 years its been uncontrollable. We have tried everything. If I don't get this surgery I honestly don't know how I will cope. I don't have a life at all. I have had to quit everything. I honestly just think I needed to get all that off my chest even if nobody could answer my questions. Since writing that last post my mental health has given me a bit of a break and hopefully I will hear something Monday. Thanks again, I will update once I have heard from them!

[Peter_Plymouth in reply to Clo23]

Just out of interest have you tried Codeine? It’s what I have ended up on post ileostomy to control the flow rate. It’s well known for slowing the speed of the gut. But I’m sure you have tried everything from what you say and if they are considering surgery then they must have exhausted all other options.

Feel free to PM me if you want to ask any specific questions that we might not want to share publicly - happy to share my experiences as it is all still very fresh in my mind and I’m still working out the kinks to make my ileostomy work properly.

Good luck with your appointment - if you find you get flustered in clinic, write yourself a short list to prompt questions you want to ask. Best wishes - Peter

[Clo23 in reply to Peter_Plymouth]

Yes Codeine was one of the first I tried, I was on it for a while because of joint pain and sadly no help! Yeah I have tried hundreds of things even different diets and nothing seems to helps, it either makes it worse or causes too much pain. Thank you for your help, I will definitely message if I have any questions!

[Ktappern]

Hi,

I can understand your concern. My ileostomy surgery was an emergency, but even after i was barely given any information to use as a guide in recovery. I cant give an expert answer as per the different between an ileostomy and colostomy. colostomyuk website is a really good site that could provide you with a lot of the information you're looking for.

For me, my ileostomy is temporary but the only option is reversal or made permanent. Im not aware of any options outside of this. I didnt have a drain after my surgery.

If it helps i made a website abagoffun.com Its a little video series of my ileostomy journey from diagnosis all the way to full recovery. As i said, i had very little info to help me, so used this platform to communicate everything from my experience to give that info to others going through it or for those like yourself who may need to have the surgery. Hopefully it may help with your concerns.

[Clo23 in reply to Ktappern]

Thank you for your reply. I will definitely check out your website, I think it’s really nice of you to do this. I have found more help from people sharing their own stories than from the actual hospital so this will be so helpful!

Thank you for answering some of my questions!

[Ktappern in reply to Clo23]

No problem at all. Please do reach out if you have further questions.

[Oldude]

Hi Clo23

I can understand why you are anxious, frustrated and upset. I have had both the colostomy and the ileostomy. I assume you are having to run to the toilet several times a day? If so, and you have a choice, contact a surgeon who knows how to do a colectomy with a J pouch. I initially had a Koch's pouch, but I don't think they do them any more and it lasted for 28 years until there was a stricture in the bowel

[Fridlie]

My hubby had ileostomy earlier this week. Fit and healthy just with a polyp in his bowel so we were scared about the outcome of this 'life changing' surgery. Now Saturday, he's coping well and looking forward to coming home. I've done loads of reading up and research and we've realised it's not going to have the devastating impact on his life we thought. This group is full of amazing and kind people with support. It sounds as though you're life will be greatly improved by this surgery, so grab life by the balls (or bowels!) and embrace it. I wish you all the luck and remember, when you go into surgery it will be the first day of the rest of your life x

[Oldude]

If you can talk your surgeon into it or have him/her give a referral, go for a Kock's pouch or a jpouch and not an ilesotomy. It is a longer procedure, but is a lot more comfortable to use. I won't give you reasons, you can look it up on-line. I have had both and believe me, unless you will only have the ileostomy temporarily the pouch is the best way and have much less problems.

[Clo23 in reply to Oldude]

a pouch would not be an option in my case. The muscles don’t work properly so I would have even less control with a pouch

[Oldude in reply to Clo23]

I guess they don't do Kock's pouches anymore. The reason I had one was because my sphincter muscle was worn out from having to go to the bathroom so often. Koch's pouch is completely different, in that you empty inserting a tube from a small opening in your stomach. Maybe you should go on-line and look it up. There are several doctor's who still do this operation.

[Clo23 in reply to Oldude]

Thank you but I know what it is, me and the surgeons have had lengthy discussions about the options available, including a kocks pouch. But at the moment this would not be a viable option for me due to my specific situation.

They are pretty reluctant to do anything surgical right now 🙄 but a pouch had always been a hard no

[Oldude]

Sorry to hear that. I hope you get taken care of so you will be comfortable