How much pain is too much? Need advice on post-ileostomy pain.

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DebbinVegas

Hi everyone, I'm new here. I'm Debbi and I now live in Vegas. I had my ileostomy in October 2015, emergency procedure due to surgical error. I was in the hospital for COPD issues and never had GI issues, but because of some bad decisions by my medical team, I ended up in a coma, contracted C-diff (as did the ENTIRE ICU and visitors, which my entire family also caught and 3 of them are still trying to get rid of..sorry, ranting), came close to having the plug pulled, since my medical "team" basically made that decision for my family, got a tracheotomy because the vent was hurting my airways, and so much more. The fact that I'm even here today is a miracle. I've been out of the hospital since mid-January.

But my question is...how much pain is too much? It's now May and I'm still basically bedridden due to immense pain and weakness. Every time I stand up, it feels like my insides are ripping out of me. It's SO HARD to roll over in any way in bed due to the pain. I've had several occasions where I thought the pain was severe enough to go to the hospital, but...long story, I wasn't allowed to go to the hospital by my family so I've just had to suffer.

I had the ileostomy in October of last year. Shouldn't some of this pain be better by now? I'm still in a wheelchair because it's too much to walk any further than the kitchen.

What's your experience/advice? TIA!

Past Member

DebbinVegas Good God!! That is way too much pain!! I totally understand a bad medical team, had my own problems with just such a scenario, but if I've learned one thing from the folks on this site, it's that where there was a bad guy, there is usually a good guy too! Don't give up on all medical personnel (and if you knew me you'd know what an improvement in attitude that is), don't assume they are all ignorant and uncaring, and don't stop looking for the right doctor. But most of all, don't keep suffering in pain. It is not normal and it is not right. Try to swallow your fear and find another doctor, medical facility, or whatever you need and get the help that you need. And stand up to your family if they are keeping you from the help that you need. C DIFF is nasty, and not your fault. It is most often contracted in hospitals and medical settings. It is also what caused a major problem for me as I was incorrectly treated for it (I tested negative) with drugs to which I am allergic, and that error cost me a colon, ovary, and gall bladder!! It has taken me a long time, 19 months, to even be able to get on with getting things corrected and moving on from the fallacy of medical "care" that I received. It has been financially, emotionally, and physically devastating but dammit, I'm still here and I intend to enjoy myself as long as I draw breath. Tell your family to stop blaming you for the problems you have all suffered due to facility errors and incompetence, and to stop adding insult to injury--they are supposed to be on your side.

Peace

Nancy

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Bill

Hello Debbi.

Thanks for your post and I think your situation is terrible.

I have not had such an extreme experience so cannot really help too much in terms of advice. However, it seems that Nancy has been through the mill as well and given some good advice that I cannot better. She has retained a very positiveĀ attitude which canĀ  help a lot in difficult circumstances such as these. I hope things get much better for you very soon.

Best wishes

Bill

jason-luton

Hi Deb.

That sounds terrible. I would definitely go to a different doctor. I don't know what your family is up to? Not allowing you to go to the hospital! WTF!!!!! I do live in the UK and know our health service is different from yours, and I am glad that when I went in, everything I needed was done and I got exceptional care. Pain should definitely not be there. My operation was an emergency, and apart from a healing wound, I had no pain at all. My stoma has never hurt me. Pain is your body's way of telling you something is wrong. If everything is right, your body will not show you any pain.

On a slightly different note, I am coming for a holiday to Vegas in a month or so. If you maybe fancy a coffee or something, then PM me. :-)

DebbinVegas

Thanks everyone for your replies. I know it's very messed up with my family (mainly my sister) for some reason being resistant to me going to the hospital and if I were in a different more reliable living situation, I would myself go to the ER, but my living situation adds to my problems with this.

Because of the extreme nature of what happened to me in the hospital and being so out of it and sick once I was out of the hospital, I've had to move in with my sister and her husband. I was living a completely independent life before all this and now I've become very dependent on my family. I am SO SCARED of doing or saying something wrong because I totally fear making anyone mad and having to look for somewhere else to live. If it were the old me, it wouldn't have been such a big deal and I'd go ahead and get to the hospital anyway, but the fact is, I need a caretaker whether I like it or not and I can't even fathom the thought of having to leave and take care of myself. Not at this point anyway.

I'm not sure what the actual issue is with my family; it's mainly my sister, who is a wonderful, lovely person and I know she doesn't mean to, and thinks she's doing what's best for me, but in the process she's flat out ignoring things I tell her about pain and other strange things I feel. Why? I don't know, and it's something I have to deal with to get through to her. But it doesn't help when I go to the doctor and when I try to bring up how bad the pain is and how I think there's something wrong, and all he can say is that I'm a medical miracle and shouldn't be alive and that I am alive should be enough, so what if I hurt? It's that kind of bs I'm dealing with from everyone...just be glad you're alive because you're not supposed to be. That's the attitude EVERYONE in my family and now my new doctor also has, so it's like I have no one in person to turn to who isn't completely biased by what's in my medical history.

Part of my sister's problem, I think, is when I first got out of the hospital, I was still pretty out of it: I don't remember much about the first month I was home, but that's partially because the first week and a half I was home I was completely abusing my pain and anxiety medications. Not because they made me high, because they didn't, but because the normal dose does nothing for my pain so I took 2 or 3 pills at a time. My sister found out about it and at that time she was doing everything all the time for me, including changing/emptying my bag, cleaning me, feeding me, everything. When she saw I'd taken a lot more meds than I was supposed to, she took them from me and hid them and just gave them to me however many times a day the bottle said. Which is fine, I understand why she did that, but she's STILL doing that too. I have to ask her to get me a couple pills for a freakin headache too, she even keeps headache pills away from me.

I think it's that whole thing, she took my pills when I had a blockage and was in severe pain, rocking back and forth, sweating, throwing up, BEGGING for her to take me to the hospital (and she didn't), thankfully it passed but I think she thinks, because I initially abused my meds, that I'm faking it when I tell her how much it hurts. She doesn't realize the LAST thing I really want to do is go to the hospital, I already spent months there last year into this year and I never want to go there again unless it's an emergency, so to ME it should say something, that I'm seriously in pain if I'm actually asking to go to the hospital. But she doesn't see it that way.

She goes in with me for my doctors' appointments: that's not because she wants to, I've asked her to go in with me because I have such a terrible memory, and she remembers things I want to tell or ask my doctor. But I'm gonna start a new line of dialogue with my doctor that ends with him saying "if you feel that way go to the ER". I think if she hears it from HIM, she'll be more open to taking me next time I'm feeling that way.

It's all so very twisted and messed up. Nobody asks for this, but then sometimes the whole existence is altered: no more independence also means no more free will apparently, and now my sister who used to just be my best friend is also acting like my mother, which is just weird to me.

 
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Primeboy

Hi Deb,

Asking "How much pain is enough?" seems like asking "how high is up?" Any pain is more than enough. Unfortunately, the answer sometimes comes down to what you are willing to give up in order to stop hurting. My wife, who is dealing with advanced breast cancer, was given an array of painkillers from mild to powerful. She will often take the milder pills when she is unwilling to give up consciousness or mobility. At night, she will take the potent stuff to help her get a decent sleep, but she'll pay a small price if she wets the bed. As far as chemo drugs go, her oncologist had offered her a menu of options, saying "Pick your poison!" and advising her to consider what side effects she is willing or unwilling to tolerate. Your level of pain, however, is beyond toleration.

Besides pain management, however, there's a more pressing consideration. Why won't your family let you go to the hospital when you are in severe pain? I understand the fear of addiction issue, but is your family also worried that the doctors there are so bad or that the hospital is a breeding ground for infectious disease? Your medical situation demands immediate attention by highly competent professionals, and I hope that with your family's support you find it. Going to another hospital is just not enough. You must do some homework and find the very best doctors. I am not sure whether your primary issue is now with your lungs or with your intestines, but from what I have learned through experience, a specialist (either a pulmonologist or gastroenterologist) needs to govern your complete recovery. Don't trust your long-term healthcare to well-intentioned but overworked interns and residents in the ER.

Good luck and keep us posted.

PB

DebbinVegas

Hi, I understand what you mean. I know it might seem like a strange thing to question, but I belong to several ostomy groups elsewhere, and there's so many people in the groups in varying stages of recovery, some still in a lot of pain, seeming like more in pain than not in pain, and since I've no experience with this at all I have no real idea what's normal. Then I say something about it to my new doctor (in a different state) who had nothing to do with my surgery and he acts like the pain is normal and to be expected considering what I went through.

I might gain a better understanding of what I went through if I could talk to my surgeon, but she won't talk to me or my family because they're so afraid I'll sue them. Which I would if I had money for an attorney but I'm not telling them that.

Suffice it to say, my surgeon and medical team at the hospital where all this happened were pretty much criminally negligent with regard to what happened to me, and how things happened afterward with them advocating pulling the plug and not allowing my family a second opinion among other things, and they're the ones with all the information about what they did to me, but I can't get anything out of anyone. They didn't even bother with getting anyone in there to teach me about my ostomy (no such thing as an ostomy nurse in my case), or how to empty the bag or how to change it or anything. I received exactly zero information from anyone about what was done to me, why it was done, or what to do with it now. Everything I know about it, the pain, what to expect, I've had to learn from trial and error and research online. They didn't even give me a couple bags to take home, I had to go find them at a medical supply store and had NO idea what to look for or buy or what all I needed.

This whole thing has just been a disaster.

Sorry I rant so much. I've no one to talk to at all.

Mrs.A

Hi Debbin,

I'm sorry you are dealing with so much. Somehow, if you think it is possible, why don't you break down all that you're dealing with into levels? Find which one you need to start with first. In my opinion, it would be the pain for sure. One thing at a time, one minute at a time. It sounds so overwhelming. Smaller steps seem more manageable and can help us see progress. I would think your current doctor would have your medical records and could talk to you about what was done, why you're still in pain, and what has to be done so you will no longer be in pain.

I hope your sister can look at the relationship you described and remember that you are the same person who needs care but can do some things for yourself as well as make good decisions about your circumstance at this stage in your recovery.

I don't know the medical side of things, but I would try and find some legal help, at least to get clear information on what has happened to your body. How can you take care of yourself if you don't know what was done to you? Was there no wound care instructions?

It's sad that they didn't send you home with any supplies or information on how to obtain them. If the entire staff and your family got C-diff, wouldn't that be enough to get your whole family interested in finding better quality of help? The Center for Disease Control came to the hospital when I got C-diff there. I also asked for a copy of my records but never received them, but I had wonderful doctors and care from the nurses.

I'm no expert, but I have experience with C-diff and know what a trial that can be. It takes a lot of patience and persistence to build up our bodies to just get enough strength to stand up, but it can be done. A physical therapist might be a consideration. I had a nurse come to my home to help me while my wound was healing. She was the one who helped me learn about how to apply and remove my pouch. The nurses in the hospital didn't really help with my pouch as I don't recall ever changing it there.

The companies who make our products have very experienced people who have a lot of knowledge about the products they make. Many are very willing to give advice about different supplies that may help you. Also, they do send free samples we can try to see if they help make living with an ostomy any easier.

I hope you soon find some relief. Make some phone calls and get some answers. Write your questions down and use keywords to help you when you're taking notes on the answers. If you have to ask them to repeat what they said, do it.

Oh, maybe United Ostomy Association can help?

http://www.ostomy.org/Home.html

https://www.ostogroup.org/

UOAA support group in Las Vegas: http://ostomylasvegas.weebly.com/home-page-ostomy-lv.html

Other support groups and information:

https://www.dignityhealth.org/las-vegas/classes-and-events/support-groups/ostomy-support

http://sunrisehealthinfo.com/community/support-groups.dot

http://lasvegassun.com/native/mountain-view/2016/apr/24/living-with-an-ostomy-pouch/

http://www.yellowpages.com/las-vegas-nv/colostomy-supplies

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