Chelly, you have every right to be frustrated. Not knowing is an awful feeling, but it sounds like your medical team is motivated to get you answers, which I hope they do!

It would be interesting to know whether the obstructions have caused the ileus, or whether they are a result of it.

Do you have access to a doctor who specializes in motility disorders? I wonder if they could provide additional insight.

Good luck with everything. Please, keep us updated.

@veganostomy hi,

I dunno but I have a small hernia next to the stoma and then I have mesh. I have a gastro appt coming up next week for more testing. I'm not sure if he's motility specialist. 

I'm thinking with all this high output and diahrhea is why I'm malnourished. Then I think Back to that vitamin C deficiency last year as well. They did a pretty deep blood test  and stool work up on me this last hospital visit. I don't understand all the results but I will have the doctor go over it with me. Some of them took time to come back so they did not come through until after I got home. 

I did Google some of them and 2 are showing inflammation in my intestine. Some fecal tests  that were done. 

It seems I have not been well since last year. It all started around the vitamin C deficiency timeline. 

I'll keep you posted as we go along my surgery date set today but not till June as he is full. I'm curious to see if there is a mesh issue. It does cross my mind. 

Hey Chelly ,hope you get sorted soon .

Chelly, I can hear how down you feel. It must feel like this will never end, but as Eric said, your medical team is really trying to get to the cause of all of this. It might take some time, but I believe that they will. The surgery should provide some answers. Hang in there, Chelly. We’re thinking of you and wishing you the best.

 Laurie 

@chelly Hey Chelly, just wanted to let you know that we’re thinking about you on VO, and hoping that you’re having a better day today. Take good care.🌺🌼🌸

Laurie

Chelly, we haven’t seen you for awhile- I hope you’re okay. Just know that we’re thinking of you and wishing the best for you. Please check in when you can.🤞

Laurie

@tigerlily hello, so, I was hospitalized yet again, 5th time. They really have been doing extensive work ups on me trying to figure this out especially since it's so many times. I've had every vitamin checked and a little low on copper and iron but nothing else. They have done every fecal tests they can think of . They have ran so many tests trying to figure this out. 

They are now wondering if I might have SIBO so I'm scheduled for a glucose breath test next week.  It would be a seperate problem from the obstructions though but would explain the bike yellow greasy diahrhea. I think I might have two things going on. Surgery will be June 3rd to release any adhesions, fix that small hernia and my stomach and also will be an exploratory. 

Sorry if I worried anyone not getting back. I've just been dealing with a whole lot of different doc appts lately and of course those hospital stays. I got out this past Monday from my last visit. 

Nice to see you back Chelly, 

Weather here is back to normal 12C dull and cloudy but still no rain so good enough to get out and about 

@chelly I’m so glad to hear from you, Chelly! You sure have been through a lot! I had to look up SIBO; I can see how the symptoms could be mistaken for colitis, so it’s good that you’re getting tested. Glad that you’re out of hospital, but also glad that your medical team seems to be doing everything possible to get a firm diagnosis. It really sounds like you’re in good hands, although I’m sure you have days when you question that. And I’m sure you’re just tired of being unwell. Hang in there - they are leaving no stone unturned. Here’s a virtual hug from all of us at VO.🤗 

Laurie 

Thanks Tony. It's still cool here..30's, 40's and 50's recently.

Tigerlily,

I love the name tigerlily. It is the name of the late Michael Hutchence's daughter. He was the singer for Inxs. Her name is Actually Heavenly Hirani Tigerlily Hutchence but they call her Tiger or Tigerlily. 

Anyhow yes, I'm very depressed about being sick all of the time. It's really taking a toll on me. I'm usually a go getter and a hard worker , working 12 hour or more shifts. It took a lot for me to realize that this is it. I can no longer work so I had to take my retirement. It is much needed at this time though so I am thankful so that I can rest when I need to and just take it slow. Yes the medical team has been pretty good. I have so many specialists at the moment. I'm trying so hard to stay out of the hospital but when that pain comes .....you know it's time to call the ambulance. I've been very teary eyed when speaking to all the doctors. I keep saying I just want to get wel. This sickness thing has all started Back in February if 2024. It started with the vit c deficiency and then the yellow greasy diahrhea and sometimes green. I'm told it's bile. They think whatever is going on is causing malabsorption. High ostomy output but I'm able to slow it down a bit with immodium. The weight loss is massive and then now malnutrition. Then there are the obstructions and the ileus. I've had 2:partial obstructions that they could see a transition point and the other 3 times was ileus.its all just too much. I'm scared about surgery too. They have to cut through my mesh..not good. Anyhow I wish I could be more positive about all this but it's just got me so anxious and depressed because we don't really know what's causing all of this. They are really trying though. I'll keep you all posted as I go along. Surgery is June 3rd. 

I really appreciate the care and concern. 

hey Chelly , now that you don't have to worry about work , you  can save your energy to get better, I know its hard not to be working but it should help you get in better shape emotionally and physically for you upcoming operation ,

its hard enough to deal with the ins and outs of normal life without having to work as well , embrace this as a chance to reset your life and get well ,

I'm doing really well and can live a fairly normal life but can't imagine how hard it is to be dealing with illness and having to work at the same time ,

sending love and healing across the Atlantic to you and hope you will have even a small improvement , because sometimes all it takes for us is a small improvement just to give us some hope . 

Oh, Chelly, goodness - sending good wishes. I hope that retirement can be of help to you in your getting time to rest while you take care. Glad that you are getting medical attention - what a way to get to know the ropes.

Cloudy here today, varying shades, looks like the sun might come out for awhile. We are expecting a little rain.

@chelly Aw Chelly. I can hear the sadness in your words. It’s hard to have hope sometimes, when it feels like nothing is working out the way you want it to. Here are some things to try. 1.Write down on a piece of paper (that you keep tucked away somewhere) the small victories. They might not seem like much at the time, but you need to keep track of them so you have evidence that something is going well. A victory might be that you were able to eat more for lunch today than yesterday, or it might be that you were able to go for a walk around the block. Whatever is working well, write it down. 2.Can you get outside and go for a short walk? If that’s possible, try looking at everything in a mindful way (this is not a walk for fitness, but mental well-being). Notice the tree buds coming into leaf, the squirrels digging, the birds singing. Feel whether the sun is on you or if it goes behind a cloud. See what flowers are coming into bloom. Don’t push yourself to go farther than you feel able; just try to do a bit every day, if you can. If you notice that you start to worry about your health issues, tell those issues that you will think about them later, but right now, you’re doing something else. 3.Give yourself permission to spend some time wallowing in sadness. But time it. Decide how much time, and spend that time crying, hitting a pillow, writing how sad you are, swearing - whatever gets it out. And when the time is up, do something entirely different. 4. Find something to escape in for awhile. It might be TV or YouTube, but try to find something uplifting or funny. Get comfy and allow yourself to escape, and tell yourself that’s your job right now. 5. At the end of every day, write down on another paper 3 things that made you feel grateful on that day. They might be small; they might be things that we normally take for granted, like clean water to drink, or clean air to breathe. Maybe it’s that you don’t have to worry about going to work. Maybe it’s having a good medical team. 6. Can you take someone with you to your medical appointments? Sometimes it’s good to have someone who can remember details we might have forgotten, and also, someone to be an advocate if we need one. I know what it feels like to have trouble expressing myself to a doctor when I’m crying, and how frustrating it feels to not be heard. Having someone with you might be helpful.  Chelly, don’t feel that you have to do all of this at once; just do what you can, and only if it’s helpful. And I know - some days, you just don’t have it, and that’s okay. It took me 2 1/2 years for my rectal incision to close, and I remember feeling so frustrated and depressed - I thought it would never close. But it did. You’re stronger than you realize, Chelly. Lean on us whenever you need to, okay?

 Laurie 

PS Tigerlily was the name of our cat. She’s no longer with us, but she was a hilarious little clown, and we miss her.

@chelly  ... Chelly I totally get being sick & tired of being sick & tired!! I'm at the end of 6 years being sick of this rediculous vitamin deficiency thing & it seems to be going strong. My iron, Potassium,  B12, even with regular shots, my salt levels... so much going down all the time. Like you, my inflamation markers are all very high.  Its been hard to deal with & accept that this is how it is. IF I get 3 - 4 hours up in a day, thats a good day  I can wear my same clothes for a week, bcuz, I get dressed, force myself to walk Missy, come home, get back in my pj pants bcuz they don't hurt my tummy, make some lunch,  when I can eat, then that's it. I'm in bed all day. Today, stopping  & visiting with friendly neighbour's was lovely, but I'm still so weak, that I had to move around a lot in order not to fall down. 

Theres no contest between anyone here. We all struggled from time to time or even continually.  This February when I turned blue & collapsed, an ambulance was called & I remained blue-ish at the hospital still. Thank God my son was upstairs & in my room. They couldn't get an IV vein & I think every nurse on the floor took their 2 or 3 tries poking my arms & hands. I remember the doctor rubbing my chest hard & loudly saying, can you open your eyes?? Lol , Barely, but I did. He told me they needed to start an "intraosseous access ", would it be okay to do this for you?!  I nodded yes. I felt the drill diving into my shin bone to start a large bore IV into my bone marrow.   They ran antibiotics to treat me for sepsis, kidney failure & severe dehydration & to replenish my salts.  I've been in bed since November. 1st with my stupid low Iron, 2, and Potassium,  B12 and that nasty bout of bronchitis. I didn't know you can get sepsis from things like that.  There's more, but this is an ongoing battle for me on a daily basis, its been about 8 yrs. with the vitamin stuff & malnutrtion.  Acceptance that is how it is right now, its a daily thing. Sometime momentarily. 

Chelly, I understand your scared & that is just fine, necessary even bcuz it means your brain is fighting the disgusting horrid way your body is treating you!   It deserves your disgust at it even. Tell it how horrible it is to you & to get its crap together. Literally! 

Laurie gave a lot of fabulous ideas to help you survive this battle. You've been thru other battles, what got you thru them ? Put into practice at least one idea above. I KNOW its not always easy when your struggling to live is it?  There are days I wonder if when I get back to bed, was this my last day up? Maybe tonight's the night I meet my maker?  The one who said "we are fearfully and wonderfully made." Well, I get the fearful part real easy! Lol.  Then I have to laugh at myself & say no way, I'm not giving in. I have 7 grands I want to play with and I need to see Gwen eat thru another 2 rows of peas 🫛 fresh from the garden again this summer & hear her little purr as she tastes the sweetness... she's so impressed by fresh peas! It's pretty adorable.  I just refuse, so far, lol, to let my body give up on me. I rest when I need to which is a lot. I barely get my things done that really need doing, but there are times even that is too much for me & its not a lot of stuff. 

I used to overthink what I was going thru & it always landed me in fear & tears.  I HOPE & think if you can try not to overthink all you're going thru and do some deep breathing excercises it may help the anxiety too.  In thru the nose & out thru mouth as best & as slow as you can, just slow it down a little every 5 breaths.  I know how strong you are, you've proven that already. I know you can get thru this battle too, even if it means cutting thru the mesh to have this surgery. Do your best to stop worrying about things you can't control, like cutting thru the mesh. Take one day, one hour, one minute at a time. Do some deep breathing excercises no matter where you are when you start to feel fearful. It helps!! Trust me, I know first hand. 

You know, I often talk about my guts in a 3rd person kind of thing. It's help me realize that I'm the one living in a body that I've been assigned to, lol, I know that may sound crazy, but, I don't care.  I try and maintain my heart & brain & my soul as MINE & if my guts  & the muscular pain & numbness & tingling from vitamin defiencies misbehave, which is ALWAYS, then so be it. They are not ME. I'm just carting these son of a gun guts around bcuz apparently I need what's left of them. Or so I'm told!  Being too thin is almost painful & no one gets it when I say "I want my fat back!" I do, just in the right places this time.

Chelly, I'm really telling you that you may feel all alone in this , but you are NOT. I'm here too. I'm struggling right along with you in the pain department too.  Each time I had surgery to take out more guts, I always wondered how I could survive surgery time after time feeling as awful as I felt. I'm pretty sure you're right there too. There is a purpose for your life.  Yes, lean on us, keep in contact & use this space as a journal to share even.  It may help just to write it down here where WE ALL understand! 

I have several friends,  but honestly, not ONE truly gets it like the precious people who come to VO all looking for support or to pass on an idea to someone to try. Thank you ERIC!!  So, we help each other here, as best as we can anyways, lol! Chelly, you've got this, trust the surgeons, the doctors, the nurses, trust time even. When I had my 2 days of fuzziness after my  blue era, I realized I had no choice. I had to trust these young people to do their jobs & my goodness did they ever do it!  They seemed to thrive on the emergence of my situation & they all took such good care of me right down to holding my hands while the doctor drilled that hole in my bone just below my knee, he did freeze the skin.  They all did so well. I believe I'm here today bcuz of them.  You too will get thru this battle! You've got this. Go ahead and cry, tears are very healing, then tell those tears to take a hike. Tell yourself how strong you are based on what you've gone thru already.  Keep in touch here when you can, come as frequently as you need to in order to walk out of what you are feeling. We all get the fear, anxiety & wanting something better. Stay as strong as you can be!