Crossing my fingers and hoping its simple easily and not a major problem for you.

Your a fighter and could do with a bit of good luck.

Chris

Posted by: @john68

 Having your husband sit in would help support and put forward the seriousness of your problems.

I agree John, and he is going to meet me there. He has gone to almost every appointment with surgeons and GIs with me since this started. Especially through the frustration of my wound not healing. I think it helps quite a bit, since he has been through the whole ordeal with me. 

@squeakyandliza you are definitely entitled to have a meltdown any time you want! This situation has been so frustrating for you; I think I would be having a meltdown too. A good cry is just part of what you need, so I’m glad to hear that you will be getting some medical advice. Liza, this will get sorted out eventually, I am confident. Unfortunately, it can’t come soon enough for you, and you will probably have to endure some diagnostics and more waiting before it does. So while you are in the process of getting this sorted, we are here to help you cope with how challenging this has been for you. After all, puppies are social creatures (Linda’s comment about you being an osto-puppy is hysterically funny😆) and we are all one big litter. 

Try not to assume the situation will never improve. Sometimes, that’s hard to do when you feel really frustrated. For me, that tends to happen at 3am, when my worries can spiral out of control. Remember that everything has a beginning, a middle, and an end. You are in the middle right now, but you won’t always be. Take a deep breath, and tell yourself that you will get to the bottom of this. Someday, Liza, you will be helping someone else who has a similar problem, because you will have the experience to enable you to do so.

Laurie

@squeakyandliza Liza, I am thinking of you and sending good health wishes. It can be very helpful to have someone with you at your appointment - two sets of eyes and ears, and minds, to consider what the doctor has to say, and also for asking questions. Sometimes I have felt a little numb at appointments and have not always remembered to ask or detail. 

Will you be able to continue working tele-style if needed?

Lisa, you can go through this. Doctor will find out what's the reason and where is the blood from. All in this family are with you.

May be you would like to let doctor know that you have to change bag so often. Hope doctor will find out where is the blood come from. I notised I put my protective ring on the base of the stoma. The protective ring is adhesive before it was eroded by the output. Therefore need to be cautious not to pull my protective ring out even if I put it wrong. I worry it will pull the base of the stoma.

I pray for you to be able to find out the reason soon and solve your problem.

@squeakyandliza 

Liza,

I am so sorry to hear of your problem. I do understand your despondency over all this. Sometimes it can be so overwhelming with the things that we have to deal with. It is good that your husband is very supportive.

I agree with John and Linda. When you go to your doctor's, it's important to have a second set of ears and eyes and who can help you ask the right questions. When I had cancer, my husband came with me on all my appointments. We would make up a list of questions beforehand and bring a note book and write down everything the doctor told us.

I will keep praying that this will be resolved soon.

Stella 

So far I have never seen ( that I could tell ) blood in my bag. Before my ileostomy I could often see blood in the discharge from my anus. But the source of the blood was right in the lower rectum or at / around the anus. Usually due to the acidic / disease ruination of those areas. Obvious red blood on the tissue when wiping.

If there is actual red blood in the bag I would suspect it is fresh and happening right at the stoma. Otherwise I think the digestive juices and mixing in the intestines would not leave it red and only detectable with a test.

Any interference with the stoma due to clothing or appliance options? Does your appliance have hard edges round the stoma? Maybe the edges are sharp after trimming to fit? My appliance has a soft material there. I notice that the Hollister appliance samples I have are quite hard clear plastic in that area. But maybe soften after a bit?

Thank you all so much for your warm thoughtful responses. It means so much to me. And telling me it is okay to feel this way makes me feel better. I worry that I should be feeling totally okay since it has been over three and a half years. 

Laurie, I totally get the 3am thing. I definitely don’t sleep well enough to lose the amount of sleep I do lying in bed thinking about things. 

LL, I know that numb feeling. Sometimes I’m just in disbelief that all this is really happening to me. It was much worse in the beginning, but there are still times I think I’m going to “wake up” from this nightmare. 

Stella, overwhelming is the perfect way to describe it!

Kedikat, it was definitely fresh blood. It has gotten under the wafer a couple times and when I removed it, I could see the two spots where the blood was coming from, and it is definitely not coming out of the stoma, which was a relief to me. I did think about the edge of the wafer cutting into the edge of the stoma. Coloplast wafers are pretty hard. 

So, I had my appt with Tim, the surgeon’s nurse practitioner, who is the one I have primarily seen since the original surgery. He was a bit confused about what was going on. First off, my second loop hole was sort of hiding and he thought my “moat” below my stoma was where the loop was. He put his finger in the moat and it went way deeper than I thought it would, which freaked me out. I showed him where the loop is and he was able to put a q-tip in it. We showed him where the bleeding was coming from, both from below the stoma and a spot above the stoma. Since he wasn’t sure exactly what was going on, he went to get the surgeon, who looked at it and said the moat under the stoma is probably granulated tissue, but he couldn’t examine too much without hurting me, and he wanted to schedule an exam under anesthesia. 

So Tim used a silver nitrate stick to burn the spot above the stoma where the blood had been spraying out. They gave me a couple more to use on that spot in case it happens again. They don’t know what is causing the blood to pour out from under the stoma. But they think if they go in and “clean out” the granulation, it will help and maybe the “moat” will even close up a bit. 

We also talked about my loop ileostomy and how the end is just loose in my body since at the time they did surgery, they weren’t sure if they were going to reconnect me. Tim said that they will do a stoma revision to make it an end ileostomy, if they can, at the same time. 

I was a little worried because we went to get a second opinion last year when they wanted to remove my rectum, and I ended up getting surgery somewhere else to remove my sigmoid colon but leave my rectum, (when my original wound finally closed after almost 3 years). He did make a comment “if you want us to”, that made me think I offended them by getting a second opinion last year. But I can’t worry about that right now. 

So it looks like another surgery for me. 🤦🏻‍♀️  Thanks again for all your support. 💕🐶

Surgery will be Dec 10th. 😳

Hi Liza, Although surgery is the last thing anyone wants, this will be a new start. A new stoma better placed and with a good spout! Don’t be afraid to put that brief forward. Plus you will be all brand new and shiny for Thanksgiving and Christmas 🎄. Hubbys gonna have to push the boat out this year. Hope he’s got a new pinny and oven gloves. Or maybe better to get invited to a friends house 😂

It must be a relief to find that something will be done. You will be all shiny and new, as John said; a good placement, with an “outie” should make such a difference.

@squeakyandliza 

 Wishing you all the best and will keep you in my prayers.

God bless,

Stella

Thanks you guys!!  I was hoping to make it through 2021 without any surgery, but maybe 2022??  I’m hoping it will be a quick recovery so I don’t have to miss time at my new job. The timing is sort of bad that way. I go see Tim for pre-op Friday so hopefully he can tell me what the recovery will be like. 

From an insurance standpoint, the timing is great, as I’ve met my out of pocket max for the year, so nothing will come out of my pocket. I will almost be like I live in Canada or the UK. 😂

As far as the holidays go, since Covid is a bit better this year, we will probably go spend both thanksgiving and Christmas with family. So not a lot of extra work for me, though I do plan to help my mom as much as possible. 😊 

Lisa, you will have a great beautiful year 2022 and all after. Have great peaceful joyful Thanksgiving and Christmas with your family.

Thank you, Stella. 

@squeakyandliza 

Am I understanding correctly? You have one stoma that is connected to a section of intestine that dead ends inside your abdomen? Then another that is similar to a regular ileostomy? So if they convert it to a more regular ileostomy, they will include the section that is now leading to a closed end internally?

I think I may be way off in how I interpreted your description.

@squeakyandliza 

Of course everyone heals differently and surgeons vary in skill. I got my ileostomy in April, April fools day actually. What a joker that doctor is. At age 64. Had the rectum completely removed and it healed very well and quickly. By one month there was just a bit of discomfort, sting, when I might have caused some stretching due to movement or position. By two months it seemed all sorted out. Only the most unusual stretching caused a bit of pain. Now I don't get any pain. In the first two months I would get random deep pains. They were seldom, very short duration and not that bad. From some of the postings here it seems it might be best to have it completely removed. As it would be no real use to me now, I am fine with it being absent.

I had my pre-op appt yesterday and my mind was blown. Remember how Tim was confused about what was going on with my ostomy?  I forgot they hadn’t seen my stoma since just after surgery- I had just been seeing them about my surgical wound not healing and my seton. 

So I went back yesterday and Tim explained to me that my second little opening was not actually the loop of my loop ileostomy, the loop is actually under the stoma at skin level so I don’t really see it. That is why the bottom moat is there. That is the one with the loose tail. And he said it should probably just be mucus coming from that one. And I have a couple times seen what looked like foam coming from under my stoma, which freaked me out at the time. The other opening which gets stool out of it, that the ostomy nurse had told me she thought was the loop part, is actually a fistula that formed where they stitched the stoma to my tummy, where a fistula has formed to a spot in my intestines before the stoma opening, which I why I get stool out of it.

So I don’t know if the loop ileostomy is actually causing my problems. It is this fistula causing my leaking problems! So they are going to do the exam under anesthesia and see exactly what is going on. If they can revise the stoma, they will to make it an end ileostomy, and hopefully do something about the fistula. 🤞

Oh boy Liza. I have only one thing to say. Imagine how easy for you a normal stoma would be when you have had to put up with all the trouble. Really stick to yer guns and best wishes 👍

@squeakyandliza you are on the road to getting this longstanding problem sorted. The road may have been longer and more convoluted than you would like, but the examination under anesthesia will shed some light on the problem so that it can be corrected. Hang in there, Liza! You will get there.

Laurie