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Surgery: no cure for me

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Posted 8/11/2017 11:35 AM (GMT 0)
This is my last, bitter, rant, then I'll drop it. I may take a break, as I can't cope with this BS anymore: I've reached the end of whatever tether I've had.

I've had Crohn's colitis (and in the small bowel as well) for 17 years without a break. I'm 42-years-old. I've had two surgeries already, one to remove my colon, the other to reverse the stoma and reconnect my ileum to the rectum (Note: I didn't have severe rectal disease like you guys - I had pancolitis which was 'rectal-sparing'. So me and my surgeon thought that reconnecting to my rectum would be okay. The small bowel Crohn's absolutely ruled me out from having a j-pouch.)

Nothing has worked. I'm facing having abdominal pain, diarrhoea (often excruciating what with the bile acid), etc. every single day for the rest of my life.

I cannot have sugery. Well I can but that leaves me with a bag for life. I come to this forum yesterday, at my lowest ebb, and I see a guy assuring the board forcefully they'd rather kill themselves than have to live with a bag for life. Oh really now? Well us people with Crohn's and not UC have little choice about that: I don't see people with Crohn's who already have permanent ostomies talking about killing themselves.

You lot have an endpoint to your disease. I don't. I have no endpoint. I can switch to a bag (the bag that some of you would rather kill yourselves than have), but the abdominal pain, etc. will almost certainly still be with me. It's no cure.

And I have had enough. Tell me. What would you do if you were facing more 40-50 years of UC? What would you do??
Posted 8/11/2017 1:33 PM (GMT 0)
I can imagine that would be so frustrating and depressing. Every time I meet with the doctors and they bring up surgery and testing to make sure it's just uc, panic sets in. There's a slight chance I have crohns/colitis and it's always in the back of mind.

I think so many of us thing "I'd never take this, never do that" until we reach our breaking points. I always said I'd rather live with the flares then take a biologic but after a 4 week hospital stay and every diet mod out there...here I am on remicade and imuran.

I'm sorry you have to go through this every day.
Posted 8/11/2017 2:16 PM (GMT 0)
"What would you do??"

do what you yourself and countless numbers of other folks have done forever = go grab another tether -
Posted 8/11/2017 3:34 PM (GMT 0)
I had an okay experience with my end ileostomy. I could definitely live with it, and I don't consider it the end of the world. It's all perspective. Whatever gives you the freedom to live well, free of pain, off drugs and away from doctors, is great in my opinion. It's funny how I see adults with children, who live with ileos, ones who posted here in the past - their priorities are very different. They are just thankful to be able to live their lives, and focus on their families, rather than being consumed with vanity over something that no one outside of their immediate family is aware of anyway. If your life is defined by whether poop comes out of your anus, then a bag will make you very unhappy. If you have other stuff of significance in your life, you will cope better. Just my opinion. Of course a bag is not ideal, but life is bigger than pooping. I know my surgeon does pouches on people with Crohn's in some cases. I'd definitely speak with him since I already know him and he can offer advice on how that's worked out for people, whether I'd be a good candidate, whether that would be better than what you've got. I think most people who live with unresponsive UC ope something in the pipeline will bet heir magic bullet. I was waiting for that, but after a while, i started feeling defeated.There are people, who go on for 10+ years, who i'd consider in unlivable states, and they keep trucking forward trying one thing after another.
Posted 8/11/2017 4:14 PM (GMT 0)
You're obviously referring to me. And quite frankly, (deleted). Everyone is entitled to their own opinion. For you, it may work. As you read, I have complications too even with my jpouch and my UC so I'm choosing to accept those issues and would rather live with that than go another route, just as you're doing so I don't know what your complaining is about. You act like you're the only one who has no solution or has issues with the solution you've chosen. For being 42 you seem to whine quite a lot and seem to be pretty darn opinionated and always relate things back to you and how you have it worse.......maybe time to grow up and either accept it and push through trying to make life as good as you can or find something else.

(Edited for language. I understand your point of view but be careful of forum rules.)

Post Edited By Moderator (iPoop) : 8/14/2017 8:44:46 AM (GMT-6)

Posted 8/11/2017 7:14 PM (GMT 0)

Bull101 said...
.maybe time to grow up and either accept it and push through trying to make life as good as you can or find something else.

You'd say you'd rather be dead than live with an ileostomy, but you apparently don't see any irony in this sentence.

There are worse things than Crohn's. There are worse things than UC. However, after 17 years without a break and the prospect of another 17 years without a break, yes I am tired of it. Beyond what words can express.

Nice to see nobody on this board understands that though! Thought I might have had some sympathy from fellow UCers but I must have the wrong type of IBD for them.

Edit: I am sorry, KulinaryKidz. Thank you.
Posted 8/11/2017 7:26 PM (GMT 0)
I'm sorry NCOT....I responded and then deleted it because I thought it sounded trivial in light of how you're feeling. I bet I am not the only one who felt like they didn't have the right words.

Hey, nobody ever replies to my posts either, I know the feeling. Oh well, I just keep on googling or hope quincy signs on eventually rolleyes

I hope you feel better and some solutions rain down on your path.....I'll be praying.
Posted 8/11/2017 7:34 PM (GMT 0)
@Marjie - Thank you.

It's horrible when you feel ignored! I feel like that sometimes. And not just on HW but across my whole life. I also went through a phase of googling everything under the sun and I still do it - just not about Crohn's much anymore. It's good to learn new things and keep your brain ticking over.

I just dunno what else to say right now. It just feels like something inside my brain has snapped. I can think of triggers - quite a few of them actually. But it's not like I can undo the triggers. Self-knowledge doesn't save you. If anything it makes you even more depressed.

I only have two emotions at the moment: anger and sadness.

Post Edited (NiceCupOfTea) : 8/11/2017 1:38:35 PM (GMT-6)

Posted 8/11/2017 7:37 PM (GMT 0)
Nice Cup of Tea, did you have all the abdominal cramping when you had the pouch originally? I remember your hating the pouch and then going for the pull down surgery. The reason I'm asking is perhaps the pull down surgery has something to do with all the cramping.

I have a permanent ileostomy due to Crohns also. I was diagnosed for 11 years with UC but then they discovered I really had Crohns. My entire colon and a small part of my ileum were removed and also my rectum. I can't have the pull down surgery but my surgeon at the Cleveland Clinic at the time said he didn't do pull downs on Crohns patients because they usually develop more Crohns involvement at the site of the attachment. This was in 1989 when I was ready for my surgery, and boy was I ready! I had a five week stay in the hospital and also four blood transfusions BEFORE surgery. After surgery I needed two more transfusions but the surgeon wanted to see if I could build up my blood using iron. It worked. He didn't want to do more transfusions because this was around the time they discovered HIV could be carried in the blood supply. The tests for this is far better today. Also the pull down procedure is probably much better too.

If I was having the horribly painful diarrhea, I personally would go back to the pouching system. Diarrhea alone is so difficult to deal with and takes away some freedoms. Then add the burning discomfort...yikes!

I've had my ileostomy for 28 years. I dealt with plenty of diarrhea for 11 years before my surgery. I was chained to the toilet. I couldn't even go grocery shopping without feeling like I was going to have an accident. I would break out in a cold sweat and I never shopped anyplace that didn't have a public bathroom. I pretty much stayed at home.

But after my surgery, I got my freedom back. The cramping stopped. This is why I asked if you had cramping when you had the ileostomy. I have done so much in my life now because I have the pouch. I have done a lot of traveling...even in Europe. I've done fun things like amusement parks, snorkeling off coral reefs and even parasailing. There is no way I could have done these things with diarrhea. So the pouch was a Godsend for me. I really got my life back.

I never let my illnesses define who I am. I happen to have these things but still continue to have a good life plus I'm able to help others too. You are still young. I was your age when I had the surgery. I would love be to see you get some peace and freedom in your life. The pouch may not seem so bad now that you are experiencing these other problems with the pull down. You might want to give this some thought and discuss this with your doctor. You obviously aren't happy with your situation right now. I always believe in hope for a better future.

Sherrine
Posted 8/11/2017 7:53 PM (GMT 0)
Hi Sherrine.

Yes, I did have some abdominal pain with the ileostomy. Not as bad as it is now though. I thought - for various reasons - the pain would go away after reversal. I accepted the prospect of going to the toilet 6-8x a day: I thought that once things had settled down, it would be like in the earlier days when I was going about 5-6x a day but without pain, tenesmus, etc. I was well used to diarrhoea, so that didn't freak me out. I was, however, looking forward to being pain and bag-free.

Well, I achieved one of those two things.

I would have a permanent stoma tomorrow if somebody could promise me there would be no more pain and no more Crohn's. But I think the Crohn's will just come back in my small bowel. I've had it there before. I mean, I might be lucky but I never have been so far. That said, I don't see much other alternative in my future. There's Stelara, but I don't really expect it to work. I don't expect anything to work anymore.

Thank you anyway.
Posted 8/11/2017 7:57 PM (GMT 0)
I think it might be time to put my second person on HW on ignore.
Posted 8/11/2017 8:00 PM (GMT 0)
I do understand. I wish promises like that could be made. I have chronic pain so pain wouldn't be the issue for me but, boy, the diarrhea sure would. I was running to the bathroom between 20-25 times a day when in a flare...which was usually going on. UGH. We are all so different. 😞

Do have a good day.

Sherrine
Posted 8/12/2017 1:13 AM (GMT 0)
Hey NCOT, I understand where you are coming from because our situations are similar. Don't compare yourself to other people--especially those who have nothing in common with you and your situation--it will only make you feel worse.
I'm a 37 year old female who has Crohn's Colitis--knows the pain of it and the frustrating lack of treatment options--and at this point I'd be content to live with a functioning stoma and a bag--happy even--in the event that it improves my quality of life. (deleted) what anyone else thinks--and I pity the *dramatic* fool who would commit suicide rathervthan have a bag. That is so, so very sad and pathetic. When there are literally people out there running ultra marathons and hiking Mt. Everest and *living a brilliant life* with a stoma. So,so sad that some people are so afraid of a stoma that they would threaten to end their life over it. Tisk tisk. I say "Good riddance!"

(Edited for language, let's keep it family-friendly)

Post Edited By Moderator (iPoop) : 8/14/2017 9:16:13 AM (GMT-6)

Posted 8/12/2017 3:52 AM (GMT 0)
Plucky,

You say things in such a nice way.

Life is such a precious gift. People that commit suicide not only waste that gift but they show how incredibly selfish they are by saddling their lived ones with the guilt and pain suicide causes the ones left behind. In my opinion, unless your health is having a marked negative impact on others lives you should... man up....suck it up...grow up and learn to deal with it. No one should ever willingly cause that kind of pain to another person that suicide causes.

Bull101, I enjoy reading your posts. You sound like a logical person. I hope that you are never in the position where you feel you have to end your life. If you do....well I hope you realize what a negative legacy you are leaving behind.

I have too ask- do all people who wear bags gross out or offend? Or is it just something that just some people personally can not deal with? Just trying to understand... ... I never really thought if my bag grosses others out before so I am now trying to understand what I can do to not make others uncomfortable....or offend anyone. I try to keep it hidden and private but.....

Yikes!!!

Clo

Post Edited (clo2014) : 8/11/2017 10:06:40 PM (GMT-6)

Posted 8/12/2017 9:32 AM (GMT 0)
Just so everyone knows, posting that you want to kill yourself is against our rules. I'm sure that this phrase is just a figure of speech in most cases, but try to refrain from saying it. thanks.
Posted 8/12/2017 12:31 PM (GMT 0)
@Sherrine - Going to the bathroom 20-25x a day would certainly be extremely miserable. I'm going about 8x a day, so that's not as big an issue to me as the pain, which I find wearying and disturbs my sleep - not usually to the point of waking me up, but I have horrible dreams and I wake up feeling exhausted before I've even begun the day.

@Plucky - Thank you! I had a bag for 2-and-a-half years. In some ways the first two months were the easiest, but I think that was because I was on oxycodone and prednisolone - the true misery didn't start until I came off both drugs, and it was miserable. I had got addicted to the oxycodone (completely inadvertently) and I had been on pred for so long, that not even a very protracted taper prevented my adrenal glands from being absolutely hammered. Anyway, I'm digressing a bit :-/ Long story was I hated my stoma for quite a long time and you'll find posts from me reflecting that (not that I recommend searching for them). I'm not gonna lie and say I grew to love it, but it did become much, much easier after the first year. All the early problems - leaks, bags not fitting properly, etc. - became ironed out as I found a setup I could stick with for years. Eventually it reached a point where the stoma became just another part of my body, and I really didn't didn't give it any more thought than any other body part, apart from when I was changing/emptying the bag.

Looking back, I should never have had the reversal, but I thought it would resolve a few niggling pain issues (in the early days of my Crohn's I had zero pain, and I thought it would go back to being like the early days of my Crohn's, only it didn't). And, I must be honest, there was always a part of me that didn't like being so dependent on specialist supplies. I'm the sort of person who sees the collapse of society around every corner, and so I found it hard to stop worrying about what would happen if my supplies could no longer be delivered. Unfortunately that particular worry not only hasn't been resolved, the world seems a far more insecure place than even 3 years ago. On the bright side, a global nuclear war would probably end all my worries in a nanosecond.

@Clo - I mostly agree with you about suicide. That said, suicidal people often manage to convince themselves that people would be better off without them and castigating them as selfish isn't going to persuade them that they aren't awful people who fully deserve to die :/

I can only speak for myself, but genuinely nobody in my family treated me any differently when I had a bag. Try not to take what Bull says about it to heart - if people like him are grossed out that's their problem to deal with, not mine. The older I get the less tolerant I get in some ways. You always seem to be giving people the benefit of the doubt - which is undoubtedly a good trait to have! - but I'm afraid I've come to some rather bleak conclusions about human nature. I do think there are genuinely nice, kind, etc. people out there, but I don't believe everyone has good intentions or motives. The latter are the ones I try to avoid.
Posted 8/12/2017 1:24 PM (GMT 0)
Why would anyone rather be dead then to live with a bag?
That's the stupidest thing I have ever heard!

Tell that to your loved ones, tell your wife, your mother, father, sister, brother or kids that you rather be gone then to live a day longer with a bag that you can easily conceal. I would love to hear there reply.

Im considering a bag and I'm only 32 not today of course but for the future.
You know Why? Cause i wanna be there for my kids. I wanna be there for my wife. I wanna live. Simple.

NCOT do whatever you have to do to improve your life. If it means the bag forever, if that's what it's gonna take. I wouldn't hesitate and frankly whoever does is stupid.

The security guard at my work had hes bladder removed due to bladder cancer and has a bag for hes urine (I dont know the name of the surgery) but i didnt even know until be told me. I couldn't even tell until he showed me, It was 3-4 years ago I didn't know until he told me about a year ago, he said he could of gone different routes by not having hes bladder removed but the moment it was mentioned he didn't hesitate and doesn't regret it one bit. Point is do what you have to do!!

Good luck.

Post Edited (whatdoigotDOC!) : 8/12/2017 7:27:28 AM (GMT-6)

Posted 8/12/2017 3:10 PM (GMT 0)
Try the Stelara if it's an option. I know people that it worked for when nothing else did, it wasn't approved at the time, I don't know it's status now, but if you qualify for it, it may be worth a try.
They have been on it for years .
Posted 8/12/2017 3:24 PM (GMT 0)
In my experience, doctors are a bit too eager with surgery before giving the meds a chance. I was told to have my colon out within 6 months of being diagnosed. Then I was practically forced to have surgery while hospitalized during a bad flare. Thank God I resisted, almost 15 years later, I still have all my parts and doing quite well.
Also, the doctors make surgery seem like an easy thing and your life will be wonderful afterwards. The surgeon told me I'd be eating "Extra hot chicken wings" a week after surgery (i'm a vegetarian). The medical community needs to rethink how they present surgery to UC patients and when it is appropriate, like many people in the world today, they need to just tell the truth!

Post Edited (beatUC) : 8/12/2017 9:44:09 AM (GMT-6)

Posted 8/12/2017 4:53 PM (GMT 0)

beatUC said...
like many people in the world today, they need to just tell the truth!

I am beginning to think they don't really know exactly what "the truth" even is......I am filing away your entire reply for safe keeping though, beatUC. Thanks for sharing it here.
Posted 8/12/2017 6:29 PM (GMT 0)
NCOT just re read your post where you mention pain medicine, maybe you can be referred to pain management, if it helped then maybe you can be managed properly and have pain medication. If something improves your pain level you could enjoy more.
It's not as though you don't have reason to be in major pain.
Posted 8/12/2017 6:44 PM (GMT 0)
NiceCupOfTea as others have said many of us have been to that place you seem to be right now, but it is hard to put into words what to say sometimes. I contemplated ending things by choice many times after 40+ years of often severe IBD (UC and for a While diagnosed with Crohn's too). I have had a year plus of full remission now that has given me the perspective that I am glad I hung in there. I went thru a million trial and errors where a few things worked for a while and then boom back with a vengeance. For me this remission which has been like no other has given me the self-satisfaction that I beat this awful ugly disease. No, I am not calling it a cure, but in my universe, I won this war and I have given myself a lifetime achievement award. I really hope that day comes for you and everyone on this board. So I urge you to hang in there and keep fighting!
Posted 8/12/2017 7:41 PM (GMT 0)
I understand that feeling of being tired of the constant fight and just wanting to give up I've been there and haven't gone thru half of what you've been thru. I know there's nothing anyone can say to make you feel better. I just wanted to offer you support. Note that's different from ,"feeling sorry" for you because no one wants to feel pity from others.

I didn't know quite what to say to bulls post so I had to sleep on it. I still don't! But this is, after all, a support forum. Thats what we come here for and being derisive of others when theyre feeling down isnt cool, IMO. I think forums are the perfect place for the saying "if you can't say something nice, say nothing at all.
Posted 8/13/2017 1:23 AM (GMT 0)
Nice, hang in there. Are you on any depression/ anti anxiety meds? This disease has gotten me so depressed at time , I have had the same thoughts. Lexapro really helped me!! I pray for all of us, it's a terrible disease and some people pain threshold maybe be higher than other and some of us can't take as much for as long as others can, ya know what I'm saying?It sucks for all of us! Hang in there please, watch funny movies or tv, I have seen golden girls 100 times I swear and I still laugh!!!! Hugs!!!!
Posted 8/13/2017 5:14 PM (GMT 0)
I wish I knew what to say. I'm sorry you are going through this, it really is a crap prognosis, contemplating pain forever without let up. I hope you can get through this, sometimes a bit of time can help to give you a better perspective.
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