Not Sure How Much More I Can Take

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AJY84

AJY84

Joined
Apr 13, 2013
Messages
24
All I'm trying to do is enjoy my evening, and then I smell s***. I look my bag over, and I can't find anything wrong. I smell it though. Why? So I reach down and grab the clip so I can lift the bag up to see if it's leaking. Low and behold the clip cut part of the bag at the bottom. So it's been slowly leaking into the clip, and then spilling out when it was full. Great, now it's on my hands. And my t-shirt. And my shorts. Of course I can't just change the bag either, because I ate not long ago. Cujo just keeps going, and going, and going. I had to get emergency surgery back in May for the Crohn's because of high grade dysplasia. Now I have a permanent ileostomy. I didn't have too much time to research what they entailed, nor did I ever think (or rather I hoped) I would ever need one. Honestly though, I can't believe outdated the supplies are. A wafer that melts? Really? It's 2015 and this is the best we as a species could come up with? I figured my stoma would be grafted onto a stainless steel type ring that a would insure it could never come loose, and wiggle its way back inside. Plus, bags would just snap/screw on, fill up, take'em off, toss'em out, and repeat. Had someone told me it was this hard, I... At this point, I really just can't take being alive anymore. I'm not happy. I'm not still alive because I think things will get better. I'm here because if I kill myself, it will devastate my family and friends. So at this point, I'm just existing for other people. My doctor has sent out my insurance information twice already to get in touch with a psychiatrist to talk to me. Of course, I have two different insurances, so they just have a p***ing contest with each other over who should pay (It took me almost a month just to get supplies covered). I haven't heard back from anyone yet as far as therapy is concerned. I went out to eat tonight and my father was talking about blood clots (as I was hospitalized back in July for one due to the surgery), and I just blurted out, "I wish mine would've just killed me, 'cause I'm really unhappy and hate being alive." I do have Borderline Personality Disorder, depression, anxiety (severe social anxiety at this point). I already take Seroquel, which has helped me stop hearing voices for a majority of the time, and stopped the self-harm completely. I take Paxil for the depression/anxiety, but at 10mg, it's not enough. These things were prescribed by a psych long ago, but I since stopped seeing him because he decided that doctor/patient confidentiality wasn't important. He has since lost his license to practice, so my family doctor took over giving me refills. I just don't know at this point how much more I can take. The rectal area that was operated on twice after my total colectomy is starting to hurt again. It was turning necrotic a few days after my initial surgery, and I had to have it debrided. Wore a wound vac for several months, and it's supposed to be at the end stage. Yet I can barely sit for 30mins without my tailbone area hurting like crazy. I can't even sleep on my left side, or I wake up in pain/sore and can't move for a good 30mins. I hafta gradually ease myself onto my right hip and try to get out of bed if I roll over in my sleep. It's just been nothing but pain, pain, more pain, depression, anxiety, fear, hopelessness, more pain, more depression, etc. etc. Which when I expressed this to a nurse at the hospital when I was there for the blood clot, she literally said, verbatim, "You need to grow up." (yes, I reported her, and I'm pretty sure she lost her job as this was not the first incident of her being in trouble before). Last night I laid in bed w/ tears in my eyes and I just hoped I wouldn't wake up. And it seems tonight will be more of the same.
 
I'm sorry AJY84. :( Can you, your parents and/or your doctor contact both insurance companies and let them know that this is urgent and that you need to be seen now? My mom used to do this for me back when I had three different ones that would fight over who was paying for what. I do this now for my husband and myself because a lot of the time it's just sitting on someone's desk and they don't know how urgent it really is. First I make sure that they received the referral then I ask them where it's at (what are they waiting for) and remind them that it's extremely urgent.

You have us too to talk to as well. Many of us have dealt with or are currently dealing with depression and anxiety. I also encourage you to talk more with other members who also have a stoma. Not just about different stoma equipment and supplies but more about the depression and anxiety that comes with it since its a huge life change. I'm going to tag Nyx and nogutsnoglory. We're all here for you anytime. :ghug:
 
Hi AJY84.

The first year with a new stoma is by far the hardest. There is a lot to deal with and adjust too.
To complicate things the stoma also goes through lots of changes. You will likely need more than one type of pouch system the first year. I'd suggest calling manufacturers to get as many free sample as you can. Then choose what works best.

I deal with anxiety and depression on a regular basis. I'm starting cognitive behavioral therapythis ffal .
Are you able to see a psychiatrist for your anxiety and depression?

In short, iIfeel for you . This is a very difficult time. Try and take it a day at a time. We'reall in this together .
 
I just wanted to send you my support and say that I understand what it's like to be depressed and to feel that there is no end to dealing with pain and sickness.

I'm really glad you reported that nurse!

As well as talking to people on the forum, I thought I'd just mention http://www.7cupsoftea.com which provides free and anonymous listening services - as sometimes just being able to express your feelings to someone who won't judge you can really help.

:ghug:
 
Thanks for the support all. I would've replied sooner, but I've been back to more doctors because now the lymph nodes in my neck are swelling up (again). They swelled up last year and I was told it most likely Lymphoma. However, two separate biopsy surgeries came back w/ negative results. The conclusion was that it's... Sorry, I can't even for the life of me remember the name off the top of my head, but it's something that could turn into Lymphoma whenever it feels like. So I hafta keep a close on eye on it, and get all kinds of blood work done now too. I'm making an appointment w/ an Ostomy nurse to see if there is anything better she can recommend. I spend more time checking my bag for leaks and worrying, than I do just going about my business.
 
Hi AJY84 i feel so sorry that you are going through all this,it is one of the hardest things to deal with physicaly never mind emotionaly.. the 1st year is hardest i found that too, but with help from my stoma nurse we found the right products for me.. it is trial n error for a while im afraid, but you will get the right way n things that suit you best, just bear with a while longer.. but please never be worried about asking for help from the docs, nurses etc, its your right to get help n treatment. best wishes n take care...
 
Hey AJY84,

I am really sorry to hear that it's going so bad for you, but I understand you completely at the moment I am also existing for my family and friends and am looking at euthanasia statement and a statement for refusal of care for when I would land in the ICU or something.

for your stoma, I have one since January this year, I have heard and practice now that if you take candy with glycerine in it like marshmallows that that will slow down your BM for a short while after 10 min or so, so that you can change your appliances in peace. Also where I live we mostly have appliances that close with velcro and that really works good for me. and for the wafer it is really trail and error, I also had some that melted as you called it and some that would irritate my skin so much that it would bleed. But now I have one with a smaller wafer from like that material that most are made of and than the outer band of that is like the sticky part of a band-aid.

I am also at the moment in a full blown depression and am in therapie, and we are looking into rehabilitation so that I will find meaning in my days and will live for myself and not for others.

Hope the tips for your stoma will help and that you will feel better in the near future!

xxx Maud
 
I'm so sorry that you're going through this. I don't have a stoma but my dad had one and the first year and a half for him was so hard. I watched him struggle with depression, embarrassment, fear and anger and it was a bad time.

I can't pretend to know what you're going through but when I was at my worst I was crying every day, refusing to get out of bed apart from going to the bathroom. You sound like a really strong person and you will get through this. There is plenty of support here so please don't feel alone xxx
 
Jennifer said:
AJY84 what's your current treatment for your Crohn's?
Click to expand...

First off, I'd like to apologize for disappearing for so long. The post-op pain slightly in and above the rectum (near the tailbone) has only gotten worse. I had my new surgeon and family doc agree on Gabapentin to help treat it, but all it did was make me zombified. Seeing a team now (pain management and psyhiatrist doc) who told me it's either permanent nerve damage, scar tissue, or possibly structural bone damage (which I go for an MRI next week to find the bone damage thing out). They switched from Gabapentin to Lyrica (they had me start out on 50mg and increase my dose by 50mg every three days. Currently up to 150mg). As far as the Crohn's treatment, I'm being referred to a specialist in Hershey. I'm still waiting on a psychiatrist to take my insurance and finally have someone to talk to.

*edit*
I also have been to physical therapy for the pain, but it's only made it worse. Switching physical therapists to see if that makes any difference.
 
I hope they find out what's going on in the MRI. Keep us posted on those results. :)

Do you feel that the nerve medication is doing anything for your pain? If not is it possible for you to take any pain medications that contain opiates (I take Tylenol #3 for joint pain as needed) or a synthetic opiate like Tramadol etc?

I hope you're able to see the GI specialist soon. I'm sorry you had a bad experience with Physical therapy but hopefully the next one will listen to you better and avoid exercises that cause more pain for you. :)
 
Jennifer said:
I hope they find out what's going on in the MRI. Keep us posted on those results. :)

Do you feel that the nerve medication is doing anything for your pain? If not is it possible for you to take any pain medications that contain opiates (I take Tylenol #3 for joint pain as needed) or a synthetic opiate like Tramadol etc?

I hope you're able to see the GI specialist soon. I'm sorry you had a bad experience with Physical therapy but hopefully the next one will listen to you better and avoid exercises that cause more pain for you. :)
Click to expand...

Sadly, the Lyrica isn't helping. The only thing that's seemed to help is either Dilaudid (which I was given in the hospital for a different back issue, and while it helped w/ the pain, the withdrawal wasn't worth it) and marijuana (which, unfortunately isn't legal where I live for medicinal purposes yet). Without access to that, I'm just going by what the doctor's have recommended thus far. My chiropractor said if it's scar tissue, he knows of a specialist in Pittsburgh that may be able to help. He said he would put in a call and let me know next week.
 
Sorry for everything your going through. I found this forum very comforting during my low point in health which i wont get into, its a long story. I could never see the light at the end of the tunnel, but it is there and it comes when you least expect it. Its the best surprise you will ever get when it comes. Let us know if you need anything!
 
Ian_H said:
Sorry for everything your going through. I found this forum very comforting during my low point in health which i wont get into, its a long story. I could never see the light at the end of the tunnel, but it is there and it comes when you least expect it. Its the best surprise you will ever get when it comes. Let us know if you need anything!
Click to expand...
We are here for you.
 
Shouldnt have to suffer, nor go thru withdrawal, maybe long term pain management with something that actually can touch your pain? Give you back some form of quality of life? You know your body best though. Wishing you well.
 
Jennifer said:
How are you doing AJY84? Any updates?
Click to expand...

Once again, my apologies for my lack of updates. Things have been rough, and I had some issues w/ my computer (fixed finally). I go back to see my pain management doctor next week. Not only is my tailbone area in pain, but now my hips and knees are hurting as well. The blood clot in my small intestine is gone finally, but the CT scan from my lungs down to my pelvic area showed all my lymph nodes are enlarged. In the beginning they said Castleman's disease, but then I saw a specialist for that who said I don't have it. The lymph nodes were all enlarged last year as well, plus on the right side of my neck (which two biopsies came back negative for Lymphoma). So, as of now I'm just trying to hang in there. Again, I sincerely apologize for the absence. I hope to be more active on here. Thank you all for letting me vent. I did finally find a psychiatrist who will take my insurance. Trying to get an appointment w/ her soon.
 
Think something that hurts more than any of our symptoms is that my loved ones think i don't care about anybody else here at my mum's and actually find myself looking forward to going home and i hate it there to be honest feel like the butt of my neighbours jokes excuse the pun
 
So on top of everything else that's been going on, my hematologist sent me for blood work because my red blood cell count was high from my last visit. So I went to the general hospital here in town to have it drawn, as my insurance didn't cover it as his office. It's been less than 9 months since my surgery, but w/ the two hospitalizations that occurred afterwards, I've had around 35-40 IVs (my veins don't seem to hold them for long). So of course my arm has nothing to offer the phlebotomist. She in turn has to stick my hand. However, there are no butterfly needles to be had. I had already been at the hospital waiting over an hour to get this done (and there was no one else there... literally three people that could've registered me, but ignored me). She said she was going to stick me w/ a regular needle. I figured, fine, whatever, I just want to get out of here. So I nodded. Well, after the second tube of blood, the vein blew. And now this is my hand...

http://imgur.com/2eVRUS0

The girl knew she did something wrong though when she took the needle out, because she looked worried and said to me, "That may bruise." That's only part of my hand too. It's severely swollen all over, and there is horrible discolouration in all my fingers (purple, deep red, black'ish look to them). The doctor took a look at it and said I have phlebitis, and it's infected. I had to go for an ultrasound to make sure there wasn't a blood clot. Ugh... It's so embarrassing now, because I have to ask my parents for help emptying my bag, because I really only have one usable hand. The only thing I can do w/ it is type.
 
Last edited:
Oh no what a pain not mention the actual pain😨. Tried to look at pic but wouldnt show me anything. Mind you it sounds bad enough!!. Hope it gets better soon. :hug:
 
Oh that does look nasty. I re tried the link n it showed me this time. Was the nurse moonlighting from her normal butchers job :rof:
 
AJY, that looks so painful. I am sorry you are dealing with so much! I hope there is a change in right direction very soon.
 
I can feel for you, as im sure lots of us can. Im so used to getting pricked for taking blood etc, ive had to give blood at for tests, and usually its quick, but from time to time, i get a tech who will blow a vein out, literally on one arm and then have to switch arms and i end up leaving with both arms bandaged... sucks, to the point where i end up at home just losing it and having a moment of weakness and find myself balling, asking why me, etc... it just gets hard at times, it all feels so never ending. Constantly feeling judged by my pain docs. Dont feel like they are on my team like i do with my GI and surgeon. Feel like they just think im lookin for drugs...
 
Why is that such a common thing BB. They know you have a painful condiction so why would you not need pain meds 😠. Would they suffer without them if it was them suffering!! I dont think so..yet they think we should do without arghhh!!!😠
I do wish they could be us for a while n see where we come from.. might not be as judgemental then eh ??. :hug:💕
 
The pain meds thing is hard... Working in a hospital I see how badly people seek drugs. It's awful. People abuse drs all the time to get their high. I also have crohns which obviously you need pain meds for occassionally.. I'm not sure if it's just in my head or if it's actually happening but I always feel guilty about asking for the pain meds when I need them.. Thankfully I found a dr that knows me well and knows that it's a legitimate need. Hes my family practice dr. Everytime I go in to see him he just asks if I need a refill now. It's nice. Then I don't have to ask any of my other drs and I don't have to feel guilty about it.
 
So far the swelling hasn't gone down, and the discolouration has only spread further. I called my doctor to ask if I should go to the hospital, but he said that as long as my finger tips weren't blue'ish, and that I had feeling in them, it was all good. Thankfully there's no blue, and I do have feeling in them. He said it could take up to two weeks for it to go away. I had a dream last night that it got so bad that I had to have it amputated. Woke up sweating, and, needless to say, didn't fall back asleep.
 
Get better soon Aj try and keep the effected hand raised while laying down ie on a pillow next to you if you can
 

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