Ive been told that my numerous incidents of obstruction are caused majoritivly by scar tissue. I've had a j pouch for 19 years and have been hospitalized for this at least 8 times. The pain is an "11" . I've noticed that ER staff know little about my situation and I suffer immensely because they treat me with less urgency than other medical emergencies. Has anybody else experienced this?
I think you're absolutely right... it's as though they think we're complaining about nothing more than a stomach ache!! I'm still very new to an ostomy, but I started right out the gate with an ileus. I have an ileostomy with the colon left intact, simply bypassed. I also have a loop ileostomy which is turning out to be a reall pain in the ... gut! From the very beginning it was established that I won't be a candidate to have a j-pouch or reconnect. I DO believe you're absolutely right that scar tissue and adhesions cause a lot of obstruction symptoms as well as the ultimate cause.
I'm really surprised though that you're having the same issue in Canada as we do in the USA. The last time I was in the ER, the wait was over 6 hours. Even though the pain was horible and I couldn't hold anything down --> it was very obvious that I was in pain. Once I got past the wait, they immediately established that I needed to be admitted... and get this I was told I shouldn't wait so long in such pain and vomiting.
I also agree with your last post... I was really hoping the "chat" would be more active. I don't know about you, but sometimes I just want to be able to talk to someone that understands. Unfortunately, I don't think my husband believes how badly I feel at times. He even told me it's my problem and he would never agree to this kind of surgery. He said he'd just rather take a bullet in the head... I asked if he thought that's what I should have done?
I hope you're feeling better and able to get answers when you need them.
Canada's system is very broken. Socialist and underfunded. I left my wife 12 years ago for several reasons but her unwillingness to accept my limitations and her generally uncompassionate attitude was a huge factor. I found calling an ambulance got quicker action in the er than walking in. It is tiresome that I have to explain to a med resident md what a jpouch is and how it works. Your hubby talks tough but it would be different if he actually had to go through it.
Hi everyone, I wanted to reply to the post. Yes, having an ileostomy is a different way of living and sometimes very tiresome. After 4 1/2 years, some family members still do not understand the basic day to day. Having the stoma is fine, it is the products that frustrate me the most. From my insurance, to the product quality, to ordering supplies through a medical company, co pays and the list goes on. I feel that the manufacturers are not accountable for their products. Even the sales staff come off very disinterested. It is only a job to them, why would they care if we leaked all over town or had a reaction to the actual product. Truthfully, I am extremely happy that I made it this far and have a spouse who literally saved my life. I really give God and him the credit, not me. I wanted to give up because UC was winning the fight. I was just the vessel to this medical miracle.
I don't know much about a J-pouch as my physician suggested for me not to opti for one. I believe my UC was too severe and a J-Pouch would have failed me. I am happy to be on this site. Some days it is very busy and other days, not so much. I like being able to post a question or a thought and someone responds who understands. Keep checking in. I found this site a huge support for me, especially during the early years. Take care and keep posting. Have a great day. Sincerely, LadyHope
I actually have so much scar tissue and adhesions that I am in pain just about all the time to varying degrees of severity. I talked to 3 GI's and all said the same thing, nothing we can do. They don't understand that this is a terrible problem for some people. The whole time I was going through 3 major surgeries in a 9 month period of time (sick for along time before that) everytime I asked a question they would tell me everyone is different which got old real quick, but try to say that to them and you would think they're deaf. Medical professionals just don't seem to think this is a problem and I'm here to say it sure as hell is. My whole life is changed because of this and they don't care. I rarely leave home because I have too much pain just sitting in a car or walking for even just short distances. I have it in my intestines and in my abdominal cavity and was told unless it affects an organ that it has attatched to they won't do anything. I'm trying to accept this reality but it's extremely hard because the whole time I was going through all of this they kept telling me I will have a normal life when all is said and done, that's what I held onto to keep going. I'm not quite sure what has to happen to me to get help or relief but it's a scary thought. I really hope you find some remedies for your situation and thanks for sharing.
Hi Darlene, as recently as July 2016 I was told the same thing by a retired colorectal surgeon who runs a pouch clinic. In short, it is how it is and there is nothing surgical anyone can due. I too am in pain and have surrendered to accepting disability income as my career was destroyed by this.
I too am fighting to get disibility but here in the US you have to fight tooth and nail to get it. My last surgery was in March of 2016 and once recovered I really tried to work but by August I knew I just couldn't because the pain and nausea can get pretty brutal and I couldn't hide it like I used to before surgeries. Trying to deal with feeling like a failure, have to get divorced, even though we don't want to, because we need my half of assets so I can pay off my debt as there is nothing left to cash in or sell. I know people have it much worse than I do and I pray for them however I feel like my life is ruined because of all this. I would like to change my attitude but this is just where I am right now and I can't change anything so I just do the best I can and take it 1 day at a time and see what wonderful crap will happen today. Thanks for listening, it's helpful to know I'm not alone in this, although I don't wish this on anyone.
It is hard to be us somedays. Our stories are similiar especially the collateral damage of marriage and vocation. I won't placate you with innoculous platitudes like " it'll be okay" or the big lie " what doesn't kill you makes you stronger." We've been through trauma to our bodies and our minds. Society doesn't value us because we aren't good little worker bees even through no fault of our own. Fact is we all need to stick together and help one another. I'm barely surviving on the sub poverty income the Canaduh gov begrudgingly doles out but I'm alive and that wasn't supposed to happen. So with a smile,wink, and middle finger salute I turn away from the abled with illusory superiority complex who would and do dismiss me as less valuable. Chime in anytime and never let them make you believe their lies.
You are right on about everything. I never thought I would find someone with the same issues I have. People say well it's just scar tissue so what's the big deal? It may not be a big deal for some (lucky) but it's just awful for people like us. You are right about the whole being looked down upon because you can't work, so much so that I feel so much guilt that I'm not contributing that I get anxiety attacks just thinking about it. I have a permanant ileostomy which I thought was going to solve my problems, and it has for some areas of my life but it also ruined the majority of the person I used to be. Pain and nausea are hard to deal with all the time, makes me sad, mad, ruined sleep as it is hard to get comfortable and the amount of household chores I can tolerate doing has cut way back and this is just a few of the ways, there's so much more. At this point I just do the best I can and if it's not good enough for someone they can kiss off with the judgements until they have walked and still sit in my shoes. Take care.
Good morning, It took me at least a year to feel strong enough to return to work after the collectomy and reversal for the pouch. What never got normal was my urgent and frequent bathroom trips. Its an indecorous issue employers and others want nothing to do with. On an unrelated note, I like to see a face of the person I cinverse with. How about a pic? 😋