I'm dying

[Maya]

Foreigner, we are all very hopeful that you will recover soon. You had been such a great help to this community and to even see your post about your suffering breaks my heart. really wish there is something I can do to be able to help you as I have said a million times before, you have helped me so much in the past.

 

[Foreigner]

One thing that we both have experienced when the threat of immenent death has passed is an almost unbelievable psychic cleansing--an appreciation for each other, for life itself in the most minute ways, that was previously lost in angst and simple physical pain. Are you experiencing that re-setting of the mind?

Yes I am. It's definitely a purification process, through intense pain and suffering. A lot of old shit that I used to worry about has completely fallen away. It has helped me to re-frame some priorities. I know I won't be the same after this. You say it's temporary and that's probably true, but the changes it creates likely aren't.

I found this quote today from the author of "The Tibetan Book of Living and Dying", and found it a propos:

"Imagine that you had gone all your life without ever washing, and then one day you decide to take a shower. You start scrubbing away, but then watch in horror as the dirt begins to ooze out of the pores of your skin and stream down your body. Something must be wrong: You were supposed to be getting cleaner and all you can see is grime. You panic and fling yourself out of the shower, convinced that you should never have begun. But you only end up even more dirty than before. You have no way of knowing that the wisest thing to do is to be patient and to finish the shower. It may look for a while as if you are getting even dirtier, but if you keep on washing, you will emerge fresh and clean. It’s all a process, the process of purification.

Whenever doubt arises, see it simply as an obstacle, recognize it as an understanding that is calling out to be clarified or unblocked, and know that it is not a fundamental problem but simply a stage in the process of purification and learning. Allow the process to continue and complete itself, and never lose your trust or resolve. This is the way followed by all the great practitioners of the past, who used to say: “There is no armor like perseverance.”

Don’t we know, only too well, that protection from pain doesn’t work, and that when we try to defend ourselves from suffering, we only suffer more and don’t learn what we can from the experience? As Rilke wrote, the protected heart that is “never exposed to loss, innocent and secure, cannot know tenderness; only the won-back heart can ever be satisfied: free, through all it has given up, to rejoice in its mastery.”

Sogyal Rinpoche

 

[Tude]

I'm sorry to hear this. I hope they realize the error of their ways!

 

[herbavore]

Don’t we know, only too well, that protection from pain doesn’t work, and that when we try to defend ourselves from suffering, we only suffer more and don’t learn what we can from the experience? As Rilke wrote, the protected heart that is “never exposed to loss, innocent and secure, cannot know tenderness; only the won-back heart can ever be satisfied: free, through all it has given up, to rejoice in its mastery.”
[/I]
Sogyal Rinpoche

So, so true. So many times here in TDS, the questions posed are basically some form of "how can I escape this pain?" and I think it is always useful to ask oneself whether that is the right question to be asking. I rarely think it is. Healing thoughts are still with you, foreigner.

 

[paranoid android]

I feel really bad for anyone that has Crohn's disease, Inflammatory bowel disease, Ulcerative colitis or any of the similar horrible diseases. I have Irritable bowel syndrome and that is debilitating enough. I basically spent 2 years lying in bed, afraid to sleep or eat because it was always worse upon waking up and if i was having a flare up food made it worse. Finally a GI specialist i was referred to said that it was most likely IBS according to my symptoms. He told me to try cutting out wheat to see if it got better and although i am nowhere near 100% alot of days atleast i can get up out of bed and i don't feel like i have stomach cancer. Right now i take Bentylol (dicyclomine) for my stomach cramps and it does work as a pretty good antispasmodic. I also take Morphine (which is prescribed to me for trigeminal neuralgia) to take the edge off the pain as well as helping with the diarrhea.

What i hate most about diseases like this is that no matter how good of shape i'm in or how well i get my Bipolar disorder under control there is nothing i can do about IBS besides leaning to manage it with diet changes and medications.

 

[NullAndVoid]

In the UK they would want to remove your colon and give you an ileo-anal pouch. Is this the option that they are giving you?

Not the end of the world in my opinion. You'd be out of hospital, putting weight on now and getting your health back.

 

[Josh]

My story starts in an almost identical way to yours, only I'm a bit further down the road. I'm PM'ing you right now.

If anyone else has any questions I'd be happy to answer them here though. (btw, I'm happier than I've ever been in my entire life now I have a stoma).

Josh.

 

[Josh]

You can definitely swim, have sex, or do anything you want. The pouches adhere well so there are no limitations.
On traveling , just bring supplies with you. If your stoma doesn't retract, you'll only need to change it about once a week
I've never heard of a stoma infection, though you CAN GET A RSH NEAR THE STOMA AND YNDER THE APPLIANCE. There are creams and mess and powder to help.
When u are flaring badly it is possible that with crohns your disease can show up elsewhere like in your mouth or esophagus. If you have crohns colotis it's rare but not impossible for the disease to return in your ileum. That was one of my main concerns too. It really hasn't been a problem except in the mouth and throat which was a problem prior anyway .
If you actually have colitis and not crohns , it's cured w surgery and does not relocate. If you get disease relocation it was never colitis at all but crohns.

I'm a former colitis patient with a permanent ileostomy now and I agree with every word in this post

 

[PriestTheyCalledHim]

My story starts in an almost identical way to yours, only I'm a bit further down the road. I'm PM'ing you right now.

If anyone else has any questions I'd be happy to answer them here though. (btw, I'm happier than I've ever been in my entire life now I have a stoma).

Josh.

How did you know you had these issues? Did the surgery hurt? Does the stoma hurt? Will it ever heal?

I hope you are doing OK Foreigner.

 

[Josh]

I had ulcerative colitis and noticed I had issues when there was blood in my stool. I buried my head in the sand about it until it was too late, my bowel was so inflamed that it perforated, poisoning me from the inside. I needed emergency surgery and 8 weeks in hospital for that one.

I the had the aforementioned j-pouch or ileal-anal pouch, but sadly this wasn't a success for me so after a little more than a year I elected to have the pouch excised and a permanent ileostomy.

Yeah, the surgery hurts! It's a 10" midline incision through your abdominal wall. Makes moving hard but you have to get moving a little bit because it wakes your bowels up, else the stoma doesn't start working and you get massively bloated and vomit a lot. I'm on my 6th major bowel surgery now so I'm used to it! (this should be the last since there's now literally nothing left inside me which can get colitis!).

You push through it though and after a few days it gets much easier. My pain was adequately managed with fentanyl at first, then just codeine.

Day to day, a stoma has no pain or even feeling at all. The only time it might get a bit sore is if I'm not 100% accurate with bag placement and leave a skin gap, it can get nappy rash type symptoms. You can get barrier wipes which provide a protective film to help with this though.

It's totally permanent for me, in January I also had my rectum and anus removed and it all sewn up, so stoma for ever now. But unlike when I had colitis I can eat, drink, take any drug I want, with no negative effects. With colitis I was stuck with about three bland foods, now I eat anything - it just helps a lot to chew well.

Really though, my life is great. I'm back working full time in London, where I make 3D art for computer games. Hardly anyone even knows I have a stoma. Bake out running a couple of times a week 5kms in 27mins12, training for my first 10km. Did a 45km bike ride loaded up with camping gear and camped by the river for two nights before cycling home again at the weekend. Training to see what adjustments I might need to survive festival season. None really, as it turns out!

https://www.dropbox.com/s/mgprqfwgz3hnoev/2015-06-27 21.14.25.jpg?dl=0

 

[NullAndVoid]

Thanks for posting your experience Josh. After I read this thread I did some research on his situation and there seems to be many people like yourself whose quality of life improved greatly after giving up their colon. I hope that Foreigner listens to you.

 

[Josh]

Hopefully he'll be able to keep his UC in remission and never need to go under the knife, but I hope that he won't rule out surgery completely if it comes to it. I know hundreds of happy stoma people's through various groups online and on facebook now, none of whom feel like it has a negative impact on their life in any way.

It's funny the range of responses you get from people though, ranging from people who are super interested and want to see it, poke it touch it. People who don't care or aren't interested, and then people who are totally freaked out about it. I try to find out what sort of person someone is quickly when I meet someone new, so I know what level of exposure to subject them to (I'm talking verbally, not actual physical exposure here), I don't tend to judge or be offended if people don't want to know. I didn't spend a lot of time talking to people about my arse hole before I had it removed - some people, but not everyone - so its just the same really.

 

[nurse1946]

So sorry .......... I'm a retired Cardiac ICU RN so I hear you. I am a medical marijuana activist for a couple of years now. Please check into this treatment protocol of using cannabis rectally and orally for at the beginning of treatment. Cannabis won't add anything to your body nor take anything away it will mainly put your body back in Homeostasis "Balance" please just give it a try... and the treatment is dirt cheap also, Blessings my friend.

 

[Foreigner]

My UC is now in remission, thanks to my efforts, and no thanks to modern medicine. In the end, it was diet (mostly pureed food) and home made ferments that did it. My blood work is normal. I still have a wartorn bowel that's going to take a while to heal but my life is returning, at last.

It disappoints me how everyday people tell me to consider surgery when they have no idea what the fuck they're even talking about. They just recycle what doctors say with no idea that there are other ways to get better, and that this is a very individual disease. I am amazed by how many people just defer to the doctors and the drugs and never explore anything else.

As for cannabis... it was totally useless for my condition. Pot advocates who think pot can cure anything are wrong. It did not bring down the inflammation one bit and I took CBD oil many times a day, daily, for weeks. It also made me uncomfortably high at a time when I didn't want to be. No thanks.

In the end what I needed was a radical probiotic program to recolonize my gut. It was like a desert in there... I was missing all the good bacteria and had some bad ones at work. Commercial probiotics are garbage. I made home made milk and water kefirs, kombucha, sauerkraut, kimchi... basically any ferment that I could culture myself, I did. Then I ate those fermented foods with every meal and started my day with them. I can even consume some dairy again, after being lactose intolerant all the sudden in Sept 2013.

 

[runninghigh]

Oh man, so sorry to hear this. Biologics are ridiculously expensive. I'm on Enbrel for rheumatoid arthritis...it's helpful. I had 1 IV infusion of Remicade, but ended up with a blood clot and had to discontinue. There are foundations (money options) to help those in need. I'm in the U.S. and getting the Enbrel free right now with the foundation (it's thousands each month otherwise) because the RA caused me to quit my job (no income). Good luck.

 

[Josh]

It disappoints me how everyday people tell me to consider surgery when they have no idea what the fuck they're even talking about. They just recycle what doctors say with no idea that there are other ways to get better, and that this is a very individual disease. I am amazed by how many people just defer to the doctors and the drugs and never explore anything else.

Yeah I would obviously have preferred not to have had the surgery and I certainly don't recommend it to people with manageable colitis! But I really had no choice, once the ulceration is bad enough to cause a perforation, it's surgery or die a slow and painful death (and from being only days/hours away from that point, I can assure you it's painful, the thread title here alone suggests you may also have an idea what it's like too).

I really hope you keep in remission, but I also hope that you don't have to make massive compromises in your life in order to do that. For many people who have had the surgery, the freedom from the stress and hassle of managing a disease like this, the fact that they might never feel 100% healthy even if they are technically in remission, far outweighs the negatives of having a stoma. In the end that is down to personal preference how you want to live your life and I respect that we probably differ in opinion a bit on that front. Hopefully no hard feelings though and I really wish you luck in staying well, keep us posted how you're getting on yeah?

By the way, pot was useless for me too, but tobacco actually helped a bit, which sucks hey?

 

[Foreigner]

^ My issues with surgery have never been directed at you or others who chose to go through with it. I know you did what you felt you had to do.

That said... I'm sorry, but nothing will ever convince me that that a jpouch or ileostomy is "freedom".

50% of people with a jpouch get pouchitis in the first two years, and the initial healing can be hell.

For every story of someone who does really well post-op, there is a story of someone dealing with some kind of ongoing nightmare. You can also get UC flares in any remaining part of the colon that aren't removed.

My point is... surgery should not be put on a pedestle. It's extremely harsh, the recovery is painful, and there can be complications. It all comes down to whether or not you get a good surgeon who can pull out all the stops to make sure your end healing has the best outcome. Based on my recent experience with doctors, there is no way on god's green earth that I would trust a hospital doctor with doing things correctly. And I know my body... if I get surgery, I will be fucked. I would have a long, protracted recovery with complications and my quality of life would still be impacted. That's what medical procedures do to me, by and large.

I honestly don't know what the future holds. I could flare again this year or I could be in remission for a long time. It depends on how I manage my life. What I do know is that NOBODY knows what UC really is and most of the "treatments" are just half measures to deal with a condition that's complicated.

Anyway, I'm in remission now, and I got there without the help of useless doctors. I wish I had a different experience of them but I didn't. I'm still angry at them and I'm sure that reads loud and clear in my writing.

 

[pleasehelpme242424]

I could say the same for America's "free universal healthcare" or "Obamacare." The health facility provided by my cheap insurance is shit. In the past 2.5 months I've met with 30-40 different doctors, had gone to the ER 3 times, urgent care 10+ times, 10~? prescriptions, all without relief. I've come to the conclusion on my own, I have HPPD and not a single doctor or nurse have come close to such a diagnosis. You would think if I mentioned this all happened after taking a party drug to the healthcare workers they would have some sort of a lead? Anyway I thought I was gonna die 4 times. Symptoms continue to worsen. So I understand "dying." With that said, I don't know what the hell is ultimately going to happen to me as I am sure you can agree with yourself. But I still have blistering faith. I'm praying for you Foreigner!

 

[yepyepwoah]

My uncle had colitis. He got tires of the medicines and started doing his own research. He started doing the master cleanse twice a year. Switched up his diet a lot. Organic foods, fruits, vegetables etc etc.

After while he stopped taking his medicines. His doctors were like "why in the fuck are you getting better". I do not think its even an issue for him at this point.

What do you have to lose? I would start a 10-20 day master cleanse ( maple syrup, lemon juice, cayenne pepper. Google it, tons of info out there) and see of you are Ny better

 

[cj]

^ My issues with surgery have never been directed at you or others who chose to go through with it. I know you did what you felt you had to do.

That said... I'm sorry, but nothing will ever convince me that that a jpouch or ileostomy is "freedom".

50% of people with a jpouch get pouchitis in the first two years, and the initial healing can be hell.

For every story of someone who does really well post-op, there is a story of someone dealing with some kind of ongoing nightmare. You can also get UC flares in any remaining part of the colon that aren't removed.

My point is... surgery should not be put on a pedestle. It's extremely harsh, the recovery is painful, and there can be complications. It all comes down to whether or not you get a good surgeon who can pull out all the stops to make sure your end healing has the best outcome. Based on my recent experience with doctors, there is no way on god's green earth that I would trust a hospital doctor with doing things correctly. And I know my body... if I get surgery, I will be fucked. I would have a long, protracted recovery with complications and my quality of life would still be impacted. That's what medical procedures do to me, by and large.

I honestly don't know what the future holds. I could flare again this year or I could be in remission for a long time. It depends on how I manage my life. What I do know is that NOBODY knows what UC really is and most of the "treatments" are just half measures to deal with a condition that's complicated.

Anyway, I'm in remission now, and I got there without the help of useless doctors. I wish I had a different experience of them but I didn't. I'm still angry at them and I'm sure that reads loud and clear in my writing.

Really glad your recovering man! Try to be easy on the doctors man they have a tough job. Like they don't know you like you know you so they can only advocate for the treatment with the best statistical outcome based on there experience. That's why the ultimate decision is left up too you. I recommend you continue seeing specialists and at least listen to the advice they give after all no one says you must follow it.