Erika, you really need to discuss this with your surgeon because we aren’t medical experts on this site. We have lots of experience in how it feels to live with an ostomy, but we can’t really tell you what to expect regarding a reversal. It’s unfortunate that you weren’t able to speak directly with your doctor; best to schedule an appointment. It’s always better to know what you’re dealing with, even if it’s news that you weren’t hoping for. No matter what the news is, we’re here to support you as best we can. 

When I was diagnosed with cancer, and told I would need a colostomy, I was devastated. I really wanted any news but that. Six years later, I can tell you that it’s not nearly as bad as I feared. Yes, there are some challenges, but I’m managing just fine. Take good care, Erika.

Laurie

Erika...a warm welcome to VO! You seem a bit frustrated and rightfully so. I'm sorry you've been through such a frustrating time. 

Your in the right place for asking all sorts of questions & we'll help you the best we can.  I'm not sure you'll ever find out exactly why you had a blockage in the 1st place, sometimes they just happen. Have you researched what Diverticulitis is? That may be your 1st clue. I'd suggest a sight like John Hopkins University /Hospital or the *Mayo Clinic is great too. I'm Canadian & these are my personal 2 favs. when I feel impatient with apt. wait times or just need info on what some blood work means. ** But still its always wise to clarify with your Doctors so as not to misconstrue something you've read. I'm sure like  most, you have a connection with Google, so maybe start by asking google what diverticulitis is and for pictures. From there you'll get information thats good & you may be  able to ask more indepth personal questions to your Doctors from there.

I have had several scopes through my ileostomy & have been sedated for them. I would suggest you give your GI Doctors office a phone call & talk to the receptionist. They are often up to date on a lot of whats going on & once you give your name & they look at your file they'll be better able to help you & answer questions we can't here.  If they can't help you then they will likely suggest you book an apt. with the doctor & if not just ask to book one. You have the right to have questions answered as best as possible. Don't hesitate to let the receptionist know you have concerns & questions you need answered *before* the next test is done.                             

In the mean time, maybe start a  journal dedicated to your situation & write down a list of your questions & concerns. Leave a space for answers. Take it with you to apts. or ask if you can record the session on your phone on Video mode, voices only & see if you can bring a support person along or to listen in.  Never record without asking first. A support person often remembers things we don't or may ask a question you may not think of.  Make sure you ask for clarification about this "xray" coming up,  how it is performed & what preperation is involved & if sedation is used or not.  Write down what you learn it does help for later especially if your fuzzy from any sedations. 

May I ask how your doing & accepting your new little intruder on your tummy & how its going for you?  I found giving mine a name helped tremendously with accepting her. I hope you have good support at home & that this helps to some extent or at least gets you started in finding out more. All the best Erika & know we are here for you as best as we can be when you need us.      

Linda

 Welcome, Erika.

There are lots of really nice people here on VO, and we appreciate Erik so much; he really is super. When you have some spare time you will enjoy wandering through all the great information here.

You might try calling the nurse in your medical office. I have done this a number of times and got clarification, information, and help. Nurses are angels.

Best of everything,

LL

Posted by: @erika

Barium enema revealed a blockage and today the sigmoidoscopy revealed the same. My surgeon said she does not know why, which is disturbing.

First, welcome to the forums. The source/cause of the blockage will need to be investigated, so I'm glad that your surgeon is ordering more tests. There could be several reasons for blockages, but I'd rather not speculate.

Posted by: @erika

an x Ray test via the ileostomy

This sounds interesting, to say the least. Based on that description, I'm not sure what it would be, but it could be an x-ray of the stoma area, which would make more sense. 

Please keep us updated as we're also interested in learning more. Best of luck. 

@tigerlily thank you so much for your feedback. My surgeon wants this test before we meet, so I am gathering information on what exactly in entails and how this would help in figuring out my situation.

It may be simpler to take a break from tests for now and consider living with my ileostomy. From what I am learning, reversals are not always the best move. Lots to consider.

again, thank you!

@veganostomy Thank you for your response. I am thinking, since I have failed the barium and sigmoid, someone is trying to tell me something! I am managing reasonably well with my ostomy, just didn’t expect to have it forever. I have to consider that at 70yrs, I maybe should just count my blessings and not go to extreme lengths to try for a reversal.

I have watched many videos on this site that have helped immensely with day to day management of my ostomy. I am very grateful for all of you!

@veganostomy one more point…..Drs admin assistant told me she believes a contrast media may be inserted in my loop ileostomy to examine my colon above the blockage. I don’t understand that anatomically and will not agree to this exam before I do…..plus any risks it may entail.

@llholiday Thank you so much! Drs admin assistant has done her best to explain this X-ray via ostomy, but that is really not her expertise. I will request more detail as well as risk factors before I agree to this test. Since I have failed the barium enemy and sigmoid tests I’m thinking a reversal may not be the best option anyway. One day at a time!

@dlkfiretruck thank you so very much for your detailed reply! I really appreciate your time.

first of all, I am managing quite well with my new friend. I have suffered from diverticula disease for 20 years and this was my second surgery because of it, but first with an ileostomy. My GI referred me to surgeon because to quote, “I’m an intrabdominal mess”. So great to have no pain and decreased risk of perforation. (Had two fistulas) 

I too am Canadian and I also like the Mayo clinic and webmd sites. Will add Johns Hopkins now.

I am managing reasonably well with my new friend and have a wonderful husband to support me. Since I have failed both DI exams prior to reversal, I’m thinking at 70 yrs old, maybe I should consider leaving well enough alone. This test through my stoma makes me anxious, especially since I don’t understand it anatomically. I don’t want to risk problems with that because it is working fine. Only one leak in almost 4 moths! I do set alarm every night as recommended by hospital ostomy nurse. Most times I have little output, but still worth disrupting my sleep I guess.

Did I understand you correctly that you have had a test through your stoma? This really makes me anxious.

thank you, again!

Posted by: @erika

@veganostomy one more point…..Drs admin assistant told me she believes a contrast media may be inserted in my loop ileostomy to examine my colon above the blockage. I don’t understand that anatomically and will not agree to this exam before I do…..plus any risks it may entail.

That is actually quite interesting and makes sense. Consider it as an option to find the cause of your blockage, but only after speaking with your doc about the risks vs benefits of not having that test.

@veganostomy Just thought I would provide an update. I went for the exam and it was a gong show. They thought it was the usual barium enema, even though I told them that my paper indicated via ileostomy. So they inserted the rectal tube and waited for radiologist. He looked more carefully at the requisition and saw that it was indeed to be done through the ostomy. Then the technician quickly started looking for the right size catheter and appeared to have no clue, so a second technician joined this debacle. I felt no confidence in fact it was the exact opposite. I wanted to run! When I reminded Dr I had no prep and had my breakfast.( because that’s what I was told) we agreed it best be rescheduled.

Dr said this is not a common exam but it is done in particular with fistulas. Risks are bleeding and perforation. I will not agree to this exam until I talk with my surgeon. This fiasco has caused me great anxiety to say the least! There must be a better way to identify the cause of my connection blockage. I am afraid to risk my stoma, which is doing it’s job just fine. I am questioning whether a reversal is worth all this at 70yrs old.

@llholiday thank you so much!

@erika Thank you for your update. 

I would feel just as hesitant if I went through the same, so your decision to talk with your surgeon is wise. 

I'm sorry you had to experience that.