Wow, Jammy, you’ve had a lot to try to cope with in a short time. Why does your surgeon think the leak will repair itself? What other options do you have? Can you schedule a meeting with your surgeon to ask questions you need answers to? What about a second opinion from a different surgeon? I can see why you’re so exhausted and scared.

Laurie

(@jammy)...hello jammy and welcome to Vegan Ostomy where you don't have to be vegan to be here. I'm so sorry for what you have gone through to get here but rest assured you are in the right place. We were all new to this once too. We all pretty much agree that its the surprise Ostomy attack thats hardest to deal with. You have gone through so much and you still can't see the light at the end of the tunnel!    

While your inbetween appointments, start making a  list of all your questions. You have the right to have answers so when you see him/her next, tell them you have a list of questions and start asking. If you can, bring someone with you or have them join the meeting on their phone or computer. You are allowed to do that, its your right. If you can, right down the answers or record the session by putting your phone on video, always be sure & ask the doctors permission first before you start recording.  If your bringing in a computer ask permission in advance.  This is a huge step in finding your support group for home.  When my hubby had cancer I actually did this with my Camera on video.   Voices only.  Make sure the  doctor knows you respect them and their time. Recording is a vital tool to remembering after and perhaps Inviting a family member to listen in & it will help you get the support you may need.   Write questions down in priority and break it up into 2 or 3 meetings. This way it won't  tie the doctor up too long.  Be up front & tell him your very concerned. 

If you don't know how to word something just come out & say it.  You can come back here & bounce off your thoughts, questions & feelings further.  Most doctors want their patients to have a clear understanding of their situation.  Its very normal to be tired. You've underone three major operations which gives your whole body a you know what kicking!!  Its not just the surgery but anesthetic can take aing time to fully clear your system & adds to your tiredness.  If your still having a bloody flow, make sure to tell them & ask if your anemic,  not all fatigue us due to a hospital stay. If they haven't tested for Anemia,  they should and there is nothing wrong with asking to do so. This is your health, your body, you can guide then apt. in the direction you need.  Maybe you need to find  good multi vitamin for your age group.  It nay give you a boost to combat what your dealing with. You can ask your GP for advice on which one. A good vitamin B tablet may help too, but a multi should have what you need daily in it. With all this surgery, you nay not be eating the same as before & that can be an energy issue too.  

Its perfectly 🙂 normal to ask these questions & to be concerned about the what ifs. We are all here to help & can try & answer any questions you have or if you just need to just  vent about your experience too. It is stressful!! Scarey even.  Some here have successful reversals & the rest have an ostomy  of one kind or another.  You are not alone I this!! 

Please, do not take this as medical advice, but you asked what happens if....if your leak does not repair?  If thats the case, they may further  wait out the healing time or remove some more intestine and reconnect with good if its not cooperating and healing.  More time is not bad. It means your body is doing a good job fighting off infection and healing can still take place.  We are really fortunate to be living in a time of huge medical advancement and there is so very much that we can go through and eventually heal from. Our bodies are amazing cell growing machines that are very forgiving to what we do to them. 

If you concerns need a second opinion, you have the right to that too. I have done that myself & so have others.  You should be able to choose who and where your comfortable. You need to be sure about what's happening to your body.  If you have friends happy with their Gastrointestinal ( GI ) doctor, you may want to seek out theirs.  Beware tho it can result in further tests and more cost depending on where you live.  

You WILL get thru this. You have already tested to be so much stronger & tougher then you may have thought your are!!  You are developing super powers!!  lol! You can ask anything here. It may take a bit of time to get answers but we all keep an eye out if there's a newbie around to be available and help where & when we can. We toss ideas around that helped us & then you get to figure out what works for you.  Be PATIENT AND KIND to yourself.  Keep your fluids up. If you notice a problem developing write it down and follow your hunch. A journal is a great way to track foods you have eaten that could cause a problem & what you did to resolve the issue. If you enjoy it & your up to it, its also not a bad idea to keep one to vent in when no ines around. 

I hope this helps a little.  Do not be shy or a stranger we are here for you.  We have several things in common but the best is ERIC! He has provided a safe place for those of us dealing with Ostomies and we have all have or had one. No question is a dumb question and no feeling unwelcome. All the best and try & take it easy. Your body needs the energy to heal. If your up to it,  go for short walks when your feeling stressed it helped me through a ton of tension. 

Again, Welcome! 

Linda

Hi Jammy.  You've sure had a tough stretch of road recently.  Don't give up hope.  Most all of us on this site have been through some very dark patches too. There is light at the end.  Hopefully the great advice above is helpful to you.  I assume by leak you/your doctor mean that the suture where the two ends of the intestine were sewn back together is leaking, although I'm not sure - since you currently have an ileostomy- what would be leaking with no stool going thru?  My only add would be that worst case if the suture doesn't heal, you would just end up with a permanent ostomy and there are so many people living entirely full, vibrant, normal lives with ostomies that it's not something to fear.  Sending you all my best healing wishes!

Posted by: @jammy

Hi all

one year ago ruptured colon due to diverticulitis, after emerg surgery I came out with colostomy ( hope I spell all this right) which developed a hernia. 7 months later I had a reversal 😄. The reversal had watery bloody stool which I was told was normal and sent home after 9 days in hospital. 2 days after I went home same intense abdominal pain and back to emerg where they told me the repair was leaking ☹️  Now I have illeostomy and after 3 months my surgeon says it’s still leaking and we have to wait 3 more months hoping the leak repairs before my 4th surgery. 
I’m tired, my surgeon has provided no info of what to expect at any time and I’m worried what happens if the “tiny little hole” does not repair for full reversal 😭😭😭. Help please

Hi Jammy. I think we’re in somewhat similar circumstances, though yours has been a much longer and more complicated journey with colostomy and hernia to boot!

I’m waiting for testing in two weeks to determine if my colorectal resection is still leaking or has healed (I'm 3 months past the Ileostomy arrival during emergency surgery to repair blowout of resection from removal of a colorectal tumor). I have reversal surgery tentatively scheduled for two weeks after that, though its dependent on the test results. If I don’t look well healed, they’ll retest 6 weeks later, and if still not healed, will look at other solutions. I go back and forth between feeling strong and visualizing great success from the get-go, but also trying not to get so built up that I come unraveled if it doesn’t work out. It’s a pretty fine line and I have those moments…..

Yes, a leak can heal. My ileostomy was put in to send my colon on a 3 month R & R vacation to hopefully heal after the 1^st blowout sent me into sepsis and shock. It sounds like that may be what your doc is trying with you too? The hole the abscess ate through my vaginal wall did heal up after draining for almost a month, so that’s one less complication, and a testament to our body’s ability to heal.

Can you request a Patient Advocate? Or do you know someone you trust that has some medical knowledge to be your advocate? Not sure where you live, but in the U.S., if you document someone as your patient advocate, the doctors/nurses are legally required to communicate with that person about your condition and care. Some hospitals have advocates they can recommend if you don’t know someone. Our local cancer foundation had lined one up for me for if I had had to have chemo/radiation. Fortunately, they got 100% of my cancer, so I didn’t go that route. However, we have a doctor friend with lots of experience in this area become my advocate and it was a HUGE help. My husband was trying to make sense of the calls in the middle of the night from the hospital staff about yet another emergency surgery while he wasn’t allowed to visit or meet with the doctors due to Covid. It was so scary for him! Our friend would talk to my doctors, then translate it so my husband could better understand. I’m sure the Doctors explained a lot to me directly, but it’s quite a blur (morphine doesn’t help the memory LOL). I also think some Doctors communicate better with someone who isn’t so emotionally taxed by the circumstances as we patients can be.

Hope that helps some. Though understandably tired, please don’t give in, don’t give up, and definitely don’t shut up till you get the answers you deserve!

Hey, @jammy thanks for joining the forum and sharing what you've been going through. That sounds tough, for anyone, so I can understand how overwhelming it all seems. 

It sounds like you're currently in a waiting game, and yes, things can heal with time.

Now, there's no saying whether the hole will be fully healed in 3 months, but you and your surgeon should be making follow-up appointments to confirm that you're ready for the next step. 

It's disappointing that you were sent home without any information. Does your hospital have a nursing staff that you can speak to about your concerns? I know that when I had my surgery and had questions, they often did NOT go directly through my surgeon, and the nursing staff was more than helpful during that time. 

I love @mmz idea of asking for a patient advocate. If this is something you end up doing, please let us know how it goes! 

You are more than welcome to post other questions in separate threads. Best of luck and hang in there!