@chelly

Thank you for reaching out so I could get the site working better, and thank you for the update.

That sounds like a terrible position to be in, and I'm sorry to hear how the hospital staff has been treating you. Try to document as much as you can about what they have and have not been providing you.

Pain management in particular is so important, and even if they are trying to be ultra-careful about giving you opioids/opiates, you shouldn't have to suffer.

Tylenol? That's maddening.

Do what you can to rest and recover. If you have a family member who can help advocate for you while you are there, try to explain your situation and get them on board.

Please, update us again when you can.

Hello and thank you Eric for fixing the site. 

My doctor sent  pain management in and they ordered me some real pain medication. I'm still in pain but to a much less extent. 

Surgeon said I had a whole lot of adhesions and released them all. 

He also said I had a lot of kinks in my intestines and probably why I was getting all the obstructions.. hopefully this will resolve my issues  

Tß

@chelly That's some good news! I do hope that it's all smooth sailing from here on out!

@chelly I’m so relieved to hear from you, Chelly! I’m sorry for what you’ve been through, but it sounds like there’s now an explanation for it. I hope the surgery resolves the problems you’ve been having. And I’m glad they have you on better pain management now. That was pretty major surgery you just had! Glad Eric was able to sort out your issues in accessing VO. That must have been frustrating for you as well! Rest up now, Chelly. Get well enough to go home and heal in your own familiar place. Thanks for letting us know how you’re doing. We’ve all been thinking of you. ❤️Take good care.

Laurie

Posted by: @chelly

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Hello and thank you Eric for fixing the site. 

My doctor sent  pain management in and they ordered me some real pain medication. I'm still in pain but to a much less extent. 

Surgeon said I had a whole lot of adhesions and released them all. 

He also said I had a lot of kinks in my intestines and probably why I was getting all the obstructions.. hopefully this will resolve my issues  

 

 

 

Tß

 

 

 

 

 

Hello Chelly! Are you okay ?  Are you making your way through this healing & pain process?  How is it going for you?? 

I've been thinking of you a lot this past week or so, especially while I'm secretly weeding garden beds & cleaning crab grass from my elderly neighbour's rock garden for him.  He's in a wheel chair now & I noticed one day as he sat outside that he was looking at the rocks & shaking his head. I'm pretty sure I knew what he was thinking as they spent a fair bit of money having it put in.  So, that's a lot of weeding between their place & mine. I don't mind helping at all, if it helps take some pressure off of both of those two sweeties! 

Though I had read all the above, I kept getting interrupted here & couldn't reply, but please know that I am praying for you & thinking of you much of the time. 

If your up to it at all, could you update us on how things are going for you .  Until then,  take good care of yourself until you can let us know. 

Hey Chelly,  glad to see your op is over , crazy how they treated you after your major surgery , opioid's can be dangerous BUT not if given for the right reason ,and pain management is a huge part of your recovery, 

Glad your own doctor has sorted out your pain meds for now ,

For anyone going through surgery I would recommend that pain management is discussed pre surgery and that pain medication is on your chart ,

Here its not so anti pain meds yet , my wife had a stent on her bile duct put in last week  and she was given targin ,oxy for breakthrough pain and  IV Tylenol in the hospital and was given a two week supply of oxy and Targin when she was discharged, 

No one should or needs to be in pain in this day and age ,

Sorry if I went on a bit of a rant but the thought of you in unnecessary pain really got to me,

Get well soon Chelly good thoughts and prayers from here .

Hello all,

So a couple days after I posted here came the ileus. Horrible!! They had to keep replenishing my magnesium and potassium And ran bolus of ringers and then continuance after that. I'm in a skilled nursing facility that I asked to go to be cause I do not feel capable of caring for myself alone in my apartment. That's just too scarey for me with no one but me there. I'm still on a liquid diet but this place does not have a lot of full liquid diet stuff and pounds ate dropping off Bad my legs feel crampy. The revised stoma is worse now than ever. There is a hard red lump next to the stoma and I'm having trouble keeping. Bag on. I have no idea what's next. I don't feel I was properly operated on with the stoma part of it. They probably should have just taken the old one down and made a new one but I'm no doctor. Just venting. This was a general surgeon not a colorectal guy. 

Yes Tony pain meds over here....well, they treat everyone like they are an addict. They dint know me though. I like them when I need them and then when things settle down I'm like get these things out of here because I get sick of them. Yes our United States addicts ruined things for the people who needs them. 

I'll never forget after my total proctolectomy and I had ileus for and spent 30 days in the hospital. They put me on TPN and then they put a peg tube in me in place of a nasogastric tube so that I could just let my stomach contents out into the leg tube bag. It was genius and so much better. But I get home and my 3 days of pain meds runs out and I'm told I have to go to pain management to get more. I could barely walk or drive with all this stuff hooked up to me. I walk in bent over and the doctor gave me a lot to get me through. It's really sad. 

Same thing after I had a kidney removed from cancer they would not give me more and the nerve pain that's associated with that surgery lasts forever. My mother had to send me some of hers and so now how dad is that? 

I need to get into the doctor about this lump and my stoma this week. 

@chelly  Hi there... thank you so much for giving an update.  I had a feeling things were not going great for you & it was troubling me. 

I think that going into an extended care type facility was a good move on your part. Better that you recognize your need for more care at this point too.  But, being it is still a medical facility of some kind, would a Doctor not come to you? Or, can an ambulance transportation be arranged?  Are you in your own room or a shared unit?   

Chelly, you are right! Addicts really screwed with the *trust* in the medical system when it comes to pain meds after surgery.  I know that some doctors may not have done the homework either, but an adduct is going to get the high one way or another.   I'm sure this helped in creating a failing system for pain control after injuries & especially surgery. 

I have said many times that it would do every doctor, surgeon, specialist alike, to have had some form of abdominal, (preferred,) surgery & not via laperoscopy either!  My own GP fell in a hockey game one night & busted his leg badly, needing pins & plates in place to put the shattered bones back together.  He confessed one appt. that he had no idea a busted leg, let alone surgery could cause so much pain & for more then the 3 days worth of pain meds he'd been prescribed.  And this was not abdominal surgery either, realistically, which we all know is a whole other ball game!  Fortunately from the time I got home after my year hospital stay & 7 big aurgeries & the last being infection, emerg. Surgery again,  sepsis;& months on a vacupak,  then seeing my present GP for a first visit bcuz my previous one had moved, I felt afraid he would not honour the papers I was sent home with & the long list of medications & even narcotics. But, he took the time, we discussed things, he examined me & looked at all the paper work I was sent home with from Vancouver 🇨🇦  with & took the advice of my surgeon & pain specialist & continued on the path they set out for me. Though dome have been removed since & ever weined off of, some were also reinstated. Maybe this is a whole other forum, but we never really talk about the medications here & why or who prescribed them, as in specialist, gp, gastroenterology...  I'm not sure if this is a good or bad topic!   Maybe Eric can take the lead & even bring a specialist in to discuss this topic.  Many of us have had several surgeries & though we strive to live our best life, residual pain is a real thing & it can be ongoing depending on the reasons. 

Chelly, What you're going thru is horrid & I'm so sorry things are going hard for you. I do hope they get better soon.  This has to feel like centuries never ending, all  wrapped up in time for you! Please know you are thought about & cared about too.

As hard as it can be, please try to stay strong & don't loose hope,  there has to be  light at the end of this tunnel for you.  There has to be answers too, somewhere,  as to what's going on with this lump too.  Please be sure & see about doctor in emerge ASAP, they may recognize what it is quicker then in a gp's office as they see trauma everyday & have near immediate access to surgeons should need be.  Ugh! I just can't & don't want to even remember it, but it sounds rather familiar to me.  Make sure the Nurses where you are are very aware of it so they can keep track of size.  Call an ambulance yourself if you have to, any time of the day or night. That's what they are there for. Remember that okay...  

This business of the pouch not fitting correctly & needing frequent changes, it's important to get to the bottom of this so your pouch can fit better too.  You're a strong Lady! Please remember that! Let us know how things go again. We are here for you!! Wine, complain, cry, laugh, whatever you need.  You have a right to your feelings! Hugs across the miles... 

Linda 

Chelly, I hope you are having a good day today. What an ordeal.I agree, addicts and street sales have really hurt medical care/pain management. I have heard of so many people in pain who were all but accused of being drug seekers. My niece, who has a rare and very painful - often debilitating - medical condition, has encountered this and it made me so angry at the cold hearts of the medical people who were supposed to be helping her. I hope that you will speak up again and again. We are all behind you in spirit. LL

Chelly, thanks for letting us know how you’re doing. I’m sad that it’s been so difficult for you. I agree with Tony about pain meds - it’s so important for your recovery to be as pain free as possible, so I’m glad that your healthcare team is doing a better job of pain management. I know it’s hard to stay positive after everything you’ve been through, but try to keep in mind that you are moving in the right direction. Things will not always be as they are now, and you now at least know that adhesions were a big problem. Hopefully, that has been resolved. One step at a time, I am hopeful that they will be able to correct all of the issues that have caused you such grief for so long. We’re thinking of you, Chelly, and wishing you well.

 Laurie 

Posted by: @tigerlily

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One step at a time

@chelly I think Laurie nailed it. This ordeal sounds overwhelming, and your body just went through a lot. Keep your medical team aware of your concerns, and have them address each one (including the bump that you've described next to your stoma).

Hello everyone,

Slowly but surely I think I'm healing up. I'm here at the skilled nursing facility still. I've been having occupational and physical therapy here. The exercises are very small but effective to help. I do get up to walk here and there as well. I've given myself my own showers all along. 

I've mostly changed my own bags as well as I'm so picky. I did let the stoma nurses do it about ,3 times in the hospital though. 

I've been on liquids for a very long time and today my diet will advance to soft GI low residue. Hopefully this ileus is resolved. I just need to take it very slow and chew well. 

I'd like to thank you all for your well wishes, concern and sound advice. I've been reading your relies it was just some days I was still too weak to post. I'm still in pain medication but a much smaller dose now. I hope to be able to rid of these soon as well but for now they are taking off the edge for the pain that's still there. Of course all of us know how this goes and each week it gets less and less. 

I hope everyone here is doing good

Hey Chelly, so glad you are doing a little better , hopefully the end of pain and hospitals is in sight for you , 

Best of luck with the soft food , that really is a great sign , rooting for you ,sending positive thoughts and prayers from our little corner of Ireland .

@chelly That sounds like a wonderful change of pace! I'm glad to hear that things are moving in a much more positive direction for you.

@chelly I am so glad to hear that you feel there’s been some improvement. It has been such a long haul for you! Remember that progress is always 2 steps forward, one step back, so don’t get discouraged if you have a setback. There are bound to be setbacks, so just don’t lose sight of any progress you’re making. The important thing is that you’re moving forward. Walking, even a short distance is a good sign; managing showers is a good sign too. Focus on every small victory and give yourself a pat on the back. Chelly, if anyone deserves a pat on the back, it’s you! Making progress is hard work sometimes, emotionally as well as physically, so listen to your body when it tells you that you need to rest. Chelly, you have shown a lot of courage throughout all of this, and now it’s paying off. Here’s a quote that got me through some of the toughest days of my cancer treatment: “Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.” Chelly, I admire your courage. You are stronger than you realized.

 Laurie 

@dlkfiretruck hi, yes I can call my hospital and ask for surgeon on call for advice and of course yes I would just call an ambulance if I had to. 

Thank you for your support as it's much appreciated . It's good to know I have people here on the forum that have ostomies and  understand. People that dont have them don't get it of course. 

I'm eating but they are pureeing my food here which is uneeded. They should have me on a low residue soft GI diet. They don't even know what that is.  They are feeding me pureed food and some of this food might even have onions in it. I'm feeling like bloated again . I'm thinking the peas. When I look this up it says yes even if purred that peas and onions and all those goodies can still cause blockages for us. 

Peas can still give us blockages. I've tried speaking with the kitchen and the nutritionist here but they are clueless about an ileostomy diet. They have people in here with them too and not realizing they could  cause blockages for these people. 

I'm.going to have to talk to them again because as I say I'm feeling bloated and. Little distended again. Hope fully it works itself threw. I'm trying to drink fluids to push it threw. 

Otherwise I'm getting better with each day. You have been through so much too as well as a lot of people here have. 

Yes I'm looking for the sunshine at the end of this tunnel and hoping the quality of my life gets better. I can remember getting the temp ostomy at the start of all my troubles and how it made such. Huge difference in the quality of my life and then all these issues started arising and I'm hoping to get Back on track.  The only thing I can do is go with the flow and just try to stay as healthy as I can and do what I'm supposed to do. 

I have that itch in my abdomen at the moment. You know that itch you get when the incision are healing so that is a good sign. Something to look forward to I need to stay positive. 

@tigerlily thank you for the words of encouragemen.t. yes I needed to hear that. Thank you

@veganostomy thank you, yes I have the hope that things will be better..slowly but surely. Just trying to take my time and slowly move towards some normalness.

@tony-h hi and thank you. Yes it will be nice not to have to think About bowel obstruction and being admitted  every couple weeks anymore. Maybe now I will have a life. I started gaining a little weight right before my surgery but I have lost 14 pounds on this surgery adventure. I'm only 120 pounds right now and I have not weighed this since I was i. My early 20's. I know I'll gain though now as long as my tummy will permit the food.