The Worst Part of Crohns

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Tommy21bn

Joined
Feb 22, 2016
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Hi All

It's a Saturday afternoon and i've just made my disabled, elderly parents afternoon coffee. Recently i've begun to feel more and more socially isolated due to a flare or a motility issue relating to strictures.

This made me think about what's the worse side effect caused by Crohns/UC. Is it pain? loneliness? Depression? Or anything that you find is the most hard hitting.

Let me know below what effects you; how does it affect you and what do you do to get on with life?

Thanks All
 
Hi Tommy,I think we all have suffered all three and more at one time or another.
For me personally,it's not being able to make plans in advance.I was always a morning person.Out of bed and outdoors.Now I have to plan trips out around public toilet availability or wait until it's "safe" around late morning.Also being unwell during the night can be soul destroying.My hubby never realises I'm in the bathroom until I tell him next morning.And of course most people haven't a clue about crohns.They think we have an upset tummy,and it will pass.Oh,if only !!!
 
Hi. I think one of the worst things for me is retiring early. I had resection surgery in 2010. I was talking two buses and the subway one way to get to work . After surgery, this was just too stressful on my body so i retired at age 55.
 
Hi Scottsma, Have you considered an ileostomy? it sounds like a drastic step but it has freed me from many of the symptoms that you have described. Something to consider.
 
Hey tom,

You sound a lot like me in many ways. I made my elderly parents coffee this morning as well. I also fixed the television remotes and tried to be kind. All they seem to want to be is angry at life. I feel resentment from them. I think it is part of getting old and isn't really personal but yet I'm the target of the crankiness.

I am disabled due to surgical procedures and have been like this since the age of 29.
Now 38. It has been tough. Losing my job and independence was and still is hard to swallow. I have had all of the feelings you describe but I choose to live on for the small joys...my dog, feeding the chickadees and walking in the woods. I guess you just have to find a way to cope. I still want to be here on this earth and so I will remain despite whatever barriers that are put in my way. Go out and feel the sunshine and think of a better tomorrow.

Peace my friend,

cmack
 
Tommy21bn said:
Hi Scottsma, Have you considered an ileostomy? it sounds like a drastic step but it has freed me from many of the symptoms that you have described. Something to consider.
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Being in the UK I can't just ask for an ileostomy.I think you have to go through all other options before it's even considered.I'm not even on any meds.at the moment,my choice.When I flare a course of pred.sorts me out,and I haven't needed it since last year.I have lopermide on repeat script and stuff for constipation,but I try not to take anything unless absolutely necessary.I have my diet sorted and eat only what suits my digestion.Most days I can cope and like all of us I have days when i'm really sick.I long for the days gone by when going to the loo was over first thing in the morning then forgotten about.
 
Hi scottsma,

I am recently diagnosed with Crohns down here in Yorkshire. I find it very interesting that you are treating your condition solely with steroids as and when you are flaring and are not taking anything else to maintain remission between flares. I want to do something similar as my symptoms are very mild (but are always with me) and will be telling my GI to that effect when he sees me again in April and tries to start me on Azathioprine. Are you willing to say a little more about your reasoning for staying off the stronger meds (maybe the same as mine, fear of turning a relatively mild intermittent condition into a full blown life changing experience or maybe some other reason ?). I would very much appreciate your thoughts on these issues. How did the GI's react to you staying away from the stronger drugs ?

I wish you well with your fight against your disease.

Ernie
 
Hello Ernie and welcome to the forum.When I was first dx'd in 2006 I had heavy bleeding and mucus during toilet trips.It took 4mnths of tests and appts to get the results. (Proctitis)A course of Prednisolone (1mnth) stopped the bleed and I was prescribed Asacol suppositories to use as maintenance.Last year more tests dx'd crohns colitis.I feel I can manage my symptoms with Loperamide if needed,and Dulcolax for the occasional (monthly) constipation.I am very aware that things can turn serious and I will know when to take action.Meds.can cause unwanted side effects and I feel that once you start there's no going back.My GI is happy with my decision and I can contact his office or IBD nurse at any time.My GP will prescribe Pred.as I need it.I'm really not happy on pred.but I cope with a months tapering course.Only needed once last year.Diet is crucial for me,but I'm happy with a restricted diet.I agree with your point of view,but if your GI is adamant meds.are important for you,then you should consider it.We're all different in our symptoms and our diagnosis,and what works for some people,does nothing for others.I know your apt.'s not until April,but I'll be interested to hear how it goes.I hope things go OK for you until then.
 
Thanks scottsma. Unless things take a turn for the worse between now and April there is no chance whatsoever that I will start on Azathioprine.
 
For me the worst part of Crohn's is the uncertainty.

Is this disease going to stay more or less as it is or get worse? Should I switch to stronger meds? Will the side effects from stronger meds be worse than the disease or will they be nothing to worry about? Will I have another internal bleeding episode and be unaware of it like happened before? And what triggered that bleeding in the first place? Is there something I'm unwittingly doing or consuming to cause/worsen this disease? Is there some unconventional treatment out there that would really help if only I knew about it?

So many questions - most of them unanswerable.
 
Scipio:

I am right with you about the uncertainty. My crohn's is relatively mild and responds well to steroids. I've been hospitalized twice (for partial obstructions) in the last three years but it doesn't feel like I've ever really recovered. I'm perhaps at 75%. My GI (whom I really like and with whom I have a great relationship) doesn't want to move to biologics (6MP gave me pancreatitis) so I am on Entocort. Is that enough? Or will I have another flare up and need to be hospitalized again? I'm in a fair amount of pain; is it just intestinal spasms? Or is it inflammation. Scopes don't reach where my issues are (mostly jejunum but more recently in the ileum too); should I push for more imaging, like an MRE? Should I just accept being 75%?
 
Jabee said:
Scipio:

I am right with you about the uncertainty. My crohn's is relatively mild and responds well to steroids. I've been hospitalized twice (for partial obstructions) in the last three years but it doesn't feel like I've ever really recovered. I'm perhaps at 75%. My GI (whom I really like and with whom I have a great relationship) doesn't want to move to biologics (6MP gave me pancreatitis) so I am on Entocort. Is that enough? Or will I have another flare up and need to be hospitalized again? I'm in a fair amount of pain; is it just intestinal spasms? Or is it inflammation. Scopes don't reach where my issues are (mostly jejunum but more recently in the ileum too); should I push for more imaging, like an MRE? Should I just accept being 75%?
Click to expand...
I hope you get to feeling 100 percent better
 
Hi Everyone,

Although I have felt all of the above at some point on this journey, the ones affecting me now are uncertainties and telling my son. I have a 7 year old boy that would be devastated and heart broken to see me sick, luckily, when I was sick he was only a baby. I haven't had to leave him for a hospitL stay yet, and that part really scares me as a mother. He knows I have tummy issues, avoid certain foods, but that's about it.
 
Jabee said:
Scipio:

I am right with you about the uncertainty. My crohn's is relatively mild and responds well to steroids. I've been hospitalized twice (for partial obstructions) in the last three years but it doesn't feel like I've ever really recovered. I'm perhaps at 75%. My GI (whom I really like and with whom I have a great relationship) doesn't want to move to biologics (6MP gave me pancreatitis) so I am on Entocort. Is that enough? Or will I have another flare up and need to be hospitalized again? I'm in a fair amount of pain; is it just intestinal spasms? Or is it inflammation. Scopes don't reach where my issues are (mostly jejunum but more recently in the ileum too); should I push for more imaging, like an MRE? Should I just accept being 75%?
Click to expand...

Hi Jabee,

Is there any particular reason why you and your GI did not try Azathioprine as an alternative to 6MP ? From what I gather they are very similar drugs but involve some different absorption processes, so I am interested to understand why one was prescribed and not the other. Maybe your pancreatitis was sufficient evidence for your GI to know that the same thing would also happen with Azathioprine so that it wasn't worth trying as a 6MP substitute ?

Are you taking Entocort all the time ? I have had a single course since diagnosis and they seemed to reduce my very mild symptoms to zero with no side effects so I am happy to have these as a (hopefully) very occasional fix.

I am very interested to read any stories of people able to manage on occasional prescriptions of steroids as and when required as this will most likely be my strategy in the foreseeable future.

Thanks in advance for any reply.

Ernie
 
All of the above say the same thing...uncertainty !!! But everything in life is uncertain, so when we're in remission we should get on and enjoy it best we can,and long may it last.Try not to worry about what might be and enjoy what is.
 
Most difficult to me is the uncertainty about: Will I tolerate this food? Does it have additives that make me worse? Will I have enough energy to go out with my friends? What will they say when I need to reschedule? How long will they trust me that I would love to but just can't? How will I be able to work until retirement? Will my colleagues think I'm just lazy? etc.

So, the mental stuff around the chronic disease (Crohn's and arthritis) seems to be the hardest part to me.
 
Hello All

Thank you everyone for sharing your thoughts on what you find to be the most difficult part of having Crohns. Whilst everyone has their individual needs it's fairly clear that anxiety relating to the progress of the disease is the most common feeling amongst us.

I wish I could share something that I have come across over 25yrs of the disease that has magically reduced the anxiety that I feel. Sadly, I cannot.

I would recommend CBT. If you can get your GP to refer you and are patient enough to sit on the waiting list (or perhaps go privately) then the sessions really work in my experience. In brief, they've helped me to realise that despite my diagnosis there are other things in my life that are equally as important. I can't guarantee that it will work for you or even that it works all of the time but it certainly works for me.

Good luck to everyone and thank goodness we have platforms like these to share our experiences as a community.

Tom
 
ErnieElse:

I believe (and please correct me if I am wrong), that 6MP is a prodrug of Azathioprine. When Azathioprine is metabolized the first substance it is broken down into is 6MP. I think some people who cannot tolerate the former can try the latter, but not the reverse. You are correct in assuming that since I had such a severe reaction to 6MP it doesn't make sense to try Azathioprine. I believe a small number of people do develop severe pancreatitis from them and I fell into that category.

I am still trying to find a dose of Entocort that doesn't exacerbate my migraines. I developed chronic migraines right around the time my digestive system fell apart; they disappear when I am on prednisone, but I have no desire to stay on that forever. I was taking Entocort when I was hospitalized last spring, and re-starting it last fall made the headaches much worse. My GI has suggested I play around with the dose so I am trying to do so.
 
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I find the hardest part to be the obstructions, and how you literally cannot tell when your going to flare or have a obstruction etc. For example i was fine going to bed Thursday, no pain etc. Woke at 4am puking and on the toilet for the next 9 hours on and off! I can be fine then suddenly without warning be in excruciating pain or being sick etc. I literally cant book anything, go away or gaurantee i can attend weddings, birthdays etc. I hate it. Im on azathioprine and temporarily steroids to get me through to next GI appointment. But i just cant live like this anymore. Im having problems/flares weekly. I dont think of the future as everyday is such a struggle, i have alot of other illnesses so i fight each day.
 
Hey Pug,

I feel for you, my life is totally restricted as well. It is no fun at all being sick. I puked three times a day for a year about two years ago, never mind the surgeries and #2 issues that went along with it......No explanation, no diagnosis. Doctors were mystified! Heartburn the whole time day and night. It sucks but I truly believe that God only gives these challenges to people that are able to deal with them. Otherwise we would be way too popular, successful and rich! (joking a little). We, that fight this disease have gumption! Keep fighting and never give up.

All the best,

cmack.

P.S. PM me any time I really love people. (especially the sick ones) Believe it or not. I would like to help you any way I can.
 
Scipio said:
For me the worst part of Crohn's is the uncertainty.

Is this disease going to stay more or less as it is or get worse? Should I switch to stronger meds? Will the side effects from stronger meds be worse than the disease or will they be nothing to worry about? Will I have another internal bleeding episode and be unaware of it like happened before? And what triggered that bleeding in the first place? Is there something I'm unwittingly doing or consuming to cause/worsen this disease? Is there some unconventional treatment out there that would really help if only I knew about it?

So many questions - most of them unanswerable.
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I'm right there with you Scipio. I'm fortunate in that my Crohn's has been mostly controlled. Except for the initial outbreak in 2006 when I was initially (mis)diagnosed with UC and the flare last year when I broke through the Lialda, my Crohn's has been well controlled. I'm on Humira now, but I am always wondering if and when that will stop working and the next flare-up with it's coinciding pain, anemia, missed work, etc., will come back without any notice. I see what's happened to others and fear bowel resections, colostomies, and more. And with IBS on top of it, every time I have a looser-than-normal stool or see some blood on my toilet paper, I start obsessing about whether my Crohn's is back.
 
Scipio said:
For me the worst part of Crohn's is the uncertainty.

Is this disease going to stay more or less as it is or get worse? Should I switch to stronger meds? Will the side effects from stronger meds be worse than the disease or will they be nothing to worry about? Will I have another internal bleeding episode and be unaware of it like happened before? And what triggered that bleeding in the first place? Is there something I'm unwittingly doing or consuming to cause/worsen this disease? Is there some unconventional treatment out there that would really help if only I knew about it?

So many questions - most of them unanswerable.
Click to expand...

You are right.Our daughter was diagnosed in March and it is hard to know day to day how she will feel?Will treatments improve her condition and if so how long?And what about her psyche and in turn ours who love her to the ends of the Earth
 
Hi folks,

That's really rough for you and your daughter. I have great sympathy.

I know one thing! You, as her parents, being on here is going to help her a lot. The more you educate yourself the better! She will be more able to relate to you if you can understand. I'm a Dad myself, I think you being there for her and being on here to understand things better, will make a huge difference. I hope I'm right.

All the best my friends, I wish you health and happiness,

cmack


"First they ignore you, then they laugh at you, then they fight you, then you win." (Mahatma Gandhi)
 
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Hi. For me it's being uncertain about what's next will happen, I currently have a restriction in my colon and afraid o being obstructed. It all makes me scared. I'm 38 live with my parents they get always make rude comments about the smell of my gas it stinks and so on. I love to mess with my grape vines when I was well. Pm me if you need someone to talk to.
 
Hey there,

That's totally rude for anybody to make fun of you especially your own parents. I live with mine as well and they tend to be rather insensitive, probably out of ignorance to the disease and just growing old. I think people feel cheated as they age, as if they worked all those years just to be put to pasture. They probably are just having a tough time too. Still not very nice is it? I would try not to take it to heart. Just concentrate on making you a better version of yourself, that's what I think we all need to do.

cmack
 
For me the worst part is constantly feeling like crap being weak sometime flares start for me at 2 in the morning and I'll be glued to the toilet or need to sleep in the bath tub for discomfort or pain now I have a transverse colostomy which apparently i didn't need and my body is weaketr than before 2016 was a weird year inI was prob taking way too much as I had paranoia january I started screaming that I'm healed and gave up all my susps and meds it's like I got possewd or something come to think of it I was using MMJ but the variety you feel in the body and not so much in the head but in saying that i was prob taking way too much as I had paranoia and munchies which I ate crap and prob didn't help things. Then did a course of pred which kinda helped and half way through the year my mum was very ill so I became angry and prob a bit disillusioned sat on the couch watching TV but was walking the dog but had heaps of discomfort and my diet was atrocious before that my diet was really good I think I became depressed and didn't realize it at the time as I was still functioning going to the shops hospital doc's etc.. then had bad flare in october and now have way more problems it was like last year waqs the year from hell now I don't think i'm absorbing much and also got scammed out of money cause I was desperate for a cure. oh well it's all in god's hands now. i gyess but yeah I was taking my mum to doc's appointments and my dad kinda put everything on me while I was dealing with my own issues so I dunno take it from here I guess.

I too live with my parents and they have been always supportive of illness my dad always pushed me to go the doctors and go to hospital when i was flaring badly,
 
crohns4ever said:
Hi. For me it's being uncertain about what's next will happen, I currently have a restriction in my colon and afraid o being obstructed. It all makes me scared. I'm 38 live with my parents they get always make rude comments about the smell of my gas it stinks and so on. I love to mess with my grape vines when I was well. Pm me if you need someone to talk to.
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I was partially obstructed what symptoms do you have if you don't mind me asking you say your unwell from what I understand

One of my symptoms was passing small stool frequently
 
I know I'm hijacking the thread a bit here but my worst flare was in the end of07 into 08 I remeber coming home from hospital and just laying in bed like a zombie and sleeping all day even my dad would come up to my room and say why are you sleeping all day I can remeber selling a project car I had as I was too ill to work on it and had my mum type yp the receipt of sale for me cause I was too sick and the guy that came to pick it up was a nice guy but i was so sick all i wanted to do was get back to bed then it all kinda evened out I still felt like crap but was trying to get out and I did even though I had to poop in strange places then it got even better and I staryed going out with friends and camping fishing doing all the stuff i missed went back to work and I think the stress and poor diet stuffed up my gut bacteria and I had a bad flare and after was sick again to go out and my friends were still emailing me and so on but I kinda got frustrated cause I was feeling poorly and pushed them away I think I remember feeling like complete dog poo and not wanting to speak to anyone I would even feel frustrayted maybe at the noise when relatives would come over and hide in my room. I was also angry and would blast my little cousin for touching my stuff and he wanted to actually come over and play games and stuff when he was a kid now he's a teen and I dont get to see him so yeah the crohns or whatever else has impacted my life in that way. I also miss the intimacy of being with someone not the sex part but more the cuddling and hugging and just being with someone.
 
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Hey Oz,

I can relate, I think pushed a lot of friends away even if just from being too miserable (which at the time I couldn't help).

I hope things improve for you and may better days lie ahead,



cmack
 
see I also remember people calling me and I wouldn't answer the phone I have no idea why maybe I was miserable maybe I didn't want to hear how peoples lives were going.

I rember my friend would call me and just thinking and looking at the phone this guy is going to talk crap and I wouldn't answer the phone or if I did and my friend was talking I would sit there and be in my own world and just wish the conversation was over. I hope none of my meds did this either.
 
Jabee said:
Scipio:

I am right with you about the uncertainty. My crohn's is relatively mild and responds well to steroids. I've been hospitalized twice (for partial obstructions) in the last three years but it doesn't feel like I've ever really recovered. I'm perhaps at 75%. My GI (whom I really like and with whom I have a great relationship) doesn't want to move to biologics (6MP gave me pancreatitis) so I am on Entocort. Is that enough? Or will I have another flare up and need to be hospitalized again? I'm in a fair amount of pain; is it just intestinal spasms? Or is it inflammation. Scopes don't reach where my issues are (mostly jejunum but more recently in the ileum too); should I push for more imaging, like an MRE? Should I just accept being 75%?
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My son's inflammation is also in the area not reachable with colonoscopy or endoscopy. MRE showed 10 inches of inflammation. The thing about inflammation is, as it heals it leaves behind scar tissue which causes the intestine to become more rigid and narrow. If you have pain your disease is active and entocort is not enough. It wasn't enough for my son. He is now on methotrexate
Although you have a good relationship with your GI, a second opinion is probably a good idea. Sorry for thread-jack
 
Jabee said:
Scipio:

I am right with you about the uncertainty. My crohn's is relatively mild and responds well to steroids. I've been hospitalized twice (for partial obstructions) in the last three years but it doesn't feel like I've ever really recovered. I'm perhaps at 75%. My GI (whom I really like and with whom I have a great relationship) doesn't want to move to biologics (6MP gave me pancreatitis) so I am on Entocort. Is that enough? Or will I have another flare up and need to be hospitalized again? I'm in a fair amount of pain; is it just intestinal spasms? Or is it inflammation. Scopes don't reach where my issues are (mostly jejunum but more recently in the ileum too); should I push for more imaging, like an MRE? Should I just accept being 75%?
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I would ask for more imaging.
 
Yeah please ask for imaging i didn't listen to my i tuition which was telling me for months to go get a ct scan at least now it will take time to heal after i left it too late
 
I cannot imagine not having a supportive mom, I'm sorry. If my husband isn't with me my mom is with me at hospital or appts. I agree the not knowing the future is the hardest. I've been doing tons of research on the Balloon Procedure and Ileum removal because I'm so bad right now. Hoping I'll make it to my Monday appt.....sigh....I've never been constipated before and my inflammation is so bad right now it screams blockage. What would happen if it doesn't clear? Can they do surgery if I can't move my bowels what would they do cannot find that intel yet on net. Kind of freaking out tonight sorry.
 
See I had a bad experience with a colonoscopy once.
Then I went to a new doc and skipped 2 colonoscopies because of the bad experience now in hindsight I remembered that he is not the previous doc and he prob Could of dilated my bowel where the thickening was or at least removed some of the scar tissue now I had a transverse colostomy that I didn't need

But last year was also weird it's like I gave up or didn't care anymore my intuition was telling me to go get scans and a colonoscopy and I didn't till it got worse and worse I honestly don't know what happened to me.
 
Ozboz that's what I worry about that I will have ignored and toughed it out so long and will have caused myself worse damage. It's so hard to know when to panic and go to ER...sigh
 
Hi GI Jane,

Get to the ER if you have to. Stay hydrated and don't be afraid to get help. You are too tough for your own good. Sorry I just want the best for you. you mentioned the high pain tolerance, maybe you need to think about it that's all.
 
please don't do what I did my intuition was teling me to get scans for months and I did nothing about it I honestly don't know why I started to look for other problems and just lost myself in that maybe I was depressed and didn;t realize it please go and do what is best right now even if that means to go to the ER
 
Ya prepacking....letting husband sleep.....can't eat...no...can't sleep...no doubt...in deep...come on sing it with me.....no I'm not sleep deprived.
tumblr_lx5p8skxfe1qa6cw5.png
 
wow....can't seem to figure out how to input picture....how hard can it be to paste a url in..aaaaahhhhh.....press yellow square mt image above......copy URL from info on picture and post.....what am I missing folks....aaahhhhh
 
These days the worst thing about Crohns for me is that I'm losing things I can safely eat and drink. So lucky for so long after an ileostomy and reconnect in 1982, in the last 10 years I've had to stop drinking coffee, eating ice cream and even avoiding Irish Cream over ice (aaarrgghhh). Even Pepsi and Dr. Pepper are sending me to the toilet over night.

I've had fistulas, extensive psoriasis, and strictures. Several times I've even had stones end up in my bladder that they had to go in, break up and retrieve. Docs tell me Crohns makes its own kind of stones; anybody else have this happen?

Each time some new problem comes I'm afraid of it, but by now I feel we can get through almost anything. Having lived with this beast for any amount of time makes us survivors.
 
JackG said:
These days the worst thing about Crohns for me is that I'm losing things I can safely eat and drink. So lucky for so long after an ileostomy and reconnect in 1982, in the last 10 years I've had to stop drinking coffee, eating ice cream and even avoiding Irish Cream over ice (aaarrgghhh). Even Pepsi and Dr. Pepper are sending me to the toilet over night.

I've had fistulas, extensive psoriasis, and strictures. Several times I've even had stones end up in my bladder that they had to go in, break up and retrieve. Docs tell me Crohns makes its own kind of stones; anybody else have this happen?

Each time some new problem comes I'm afraid of it, but by now I feel we can get through almost anything. Having lived with this beast for any amount of time makes us survivors.
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I feel as I get further along there is something new that aggravates my gut.
 
I feel you on that buddy it seems like I take one step forward and three steps behind. Hey cmack how are you buddy?
 
Are you feeling bad today cmack? Me two as always bro. Crohns sucks big time. Hope you the very best as always bro.
 
Hell may need another surgery but I pray every night that I wont need it but then when
you have poop coming out of both ends. A male front parts should not do that you know.i
 
I've been in VA Hospital in Seattle since Friday. So much pain they are trying to get under control. Very impacted backing up into small intestine, what does that mean and problems associated anyone know?

IV meds and lots of stool softeners, suppositories, enemas, and repeat.....I always wondered what depends felt like....really they put frillies on them because that made me feel sexy lol. Only a few small marbles with some loose stools working its way around hopefully eroding the dam and waiting for it all to work....sigh....never had one of these only always had diarrhea so very confused and now am missing my diarrhea lol. Remember horse burrs....ya somehow they got inside me...pretty sure it was from looking at a picture of wild horses...no I'm not on high pain meds why would you guys say that...:)

My two doctors here have been amazing with everything I'm so fortunate to have that the GI is a Fellow which my husband explained is even more educated. Adjusting meds around and still get my Envivio tomorrow.

Wish me luck I have this baby soon....that's what it feels like between the swelling of belly and contractions of pain....I really need sleep can you tell. hahaha
 
Sending support. I don't know but wonder if you have an obstruction. Hope the Entyvio works . Let us know
 
Had the CAT and Xrays so not quite obstructed but close whatever that means. Swelling is still bad in the TI but not enough for surgery so waiting game I guess. Cannot believe hospitals don't have heating pads anymore just this instant break small ones....crazy.
 
GI Jane

Thank God for small miracles. Have fun being doped up LOL! At least you are getting some help. So glad to hear from you buddy.

Please don't name the "Baby" after me! ;)

peace and well wishes,

cmack
 
Hi GI Jane,

Hope you got some sleep. Exxon Valdez! Too funny! You mentioned no OXY. Do the doctors have access to Targinact?

The oxycodone component is an opioid and is responsible for the pain-relieving effects. Naloxone opposes the effects of opioids but is poorly absorbed into the body when given orally, meaning almost all the dose stays within the gastrointestinal tract and reduces the local side effects from the oxycodone. Constipation was significantly relieved in a 2008 study.[1] The drug was released in 2006 in Germany and is available in some other European countries since 2009.[2]

I looked it up on Wikipedia so who knows right? Wouldn't hurt to ask. Maybe it is an option.

I heard about it from somebody with Crohn's and they were prescribed it for seton pain.
I hope you are OK.



Sending you positive thoughts and my prayers,



cmack
 
GI Jane,

When I was in the hospital for my surgeries I was given intramuscular shots of Demerol every four hours. My butt looked like a dartboard but it helped the pain and I had no constipation. I think they countered that with Lactulose (stool softener) Maybe something else to ask about for pain.

hope this helps,

cmack
 
cmack said:
GI Jane,

When I was in the hospital for my surgeries I was given intramuscular shots of Demerol every four hours. My butt looked like a dartboard but it helped the pain and I had no constipation. I think they countered that with Lactulose (stool softener) Maybe something else to ask about for pain.

hope this helps,

cmack
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Ya had the demerol twice made me feel so off the second time it really disturbed me unfortunately. Yep been on four different ones this morning and nothing...sigh. Trying Toroidal not sure if I've ever had that one, dicyclomine for spasms so hopefully some relief with these ones.
 
GI Jane,

How are you bud? Did they get you some better meds yet? Hospitals suck hey! Do you get anything good on TV in there? What are the VA hospitals like? Sorry for all the questions I'm just a curious guy. Try to get some rest.

Hope you are on the mend,


cmack
 
Thanks. Ya TV with cable. A great view of Seattle now with snow, pretty. There are activities all week I can go to when I can leave my room. We got internet access in room finally which is awesome. Golytely didn't let me sleep much last night and unfortunately didn't produce much but hey maybe slowly erode that mountain inside. People are mostly really nice here it helps being a veterans hospital I think because of all the bad pr in the past they made up for their shortcomings now. Time to hit therapy haven't been using my arm crutches as much lately so need to get out of my wheels. My husband finally got into the Fisher House so he can sleep, that place is crazy nice. Thanks for keeping me company everyone.
 
GI Jane,

No need to thank me. I appreciate your company as well. Glad your Husband got to have a rest, now maybe you are next. Hope so anyways. They gave me Lorazepam 1mg and Gravol to sleep in the hospital, ear plugs too(helped quite a bit). These measures were needed a few times, as some of my other roommates had snoring issues! Major log sawing operation in the dark hours! LOL

Wishing you and your husband recovery and lots of rest,

cmack
 
cmack said:
GI Jane,

No need to thank me. I appreciate your company as well. Glad your Husband got to have a rest, now maybe you are next. Hope so anyways. They gave me Lorazepam 1mg and Gravol to sleep in the hospital, ear plugs too(helped quite a bit). These measures were needed a few times, as some of my other roommates had snoring issues! Major log sawing operation in the dark hours! LOL

Wishing you and your husband recovery and lots of rest,

cmack
Click to expand...

Because of the war and such I have a high startle reflex so I always wear ear plugs and eyeshades if in bright room. I so fortunate to not have room mates since it's mostly males at the VA.
 
GI Jane,

I'm glad you don't have to share a room. I think my grandpa and some of the others he served with had something they called "shell shock." I certainly don't blame you for getting startled easily! War must be horrible. Good thing we have brave men and women like you to defend us. Hope the meeting with the surgeon went as well as possible. I was always a nervous wreck when they explained all the procedures to me. Yikes!


My thoughts and prayers are with you,

cmack
 
cmack said:
GI Jane,

I'm glad you don't have to share a room. I think my grandpa and some of the others he served with had something they called "shell shock." I certainly don't blame you for getting startled easily! War must be horrible. Good thing we have brave men and women like you to defend us. Hope the meeting with the surgeon went as well as possible. I was always a nervous wreck when they explained all the procedures to me. Yikes!


My thoughts and prayers are with you,

cmack
Click to expand...

Ya each generation has a different name...same thing.

Appt went ok.....still no date which is frustrating. They want to have one more Envivio does in me before surgery. That's on the 6th. They are supposed to call me back this week with scheduling. Was really hoping that would be done today. Was a rough pain and runs night so wanted some conclusion. Oh well it makes sense to put me in a better place for healing from the surgery.
 
GI Jane said:
Ya each generation has a different name...same thing.

Appt went ok.....still no date which is frustrating. They want to have one more Envivio does in me before surgery. That's on the 6th. They are supposed to call me back this week with scheduling. Was really hoping that would be done today. Was a rough pain and runs night so wanted some conclusion. Oh well it makes sense to put me in a better place for healing from the surgery.
Click to expand...
Support for you
 
Tommy21bn said:
Hi All

It's a Saturday afternoon and i've just made my disabled, elderly parents afternoon coffee. Recently i've begun to feel more and more socially isolated due to a flare or a motility issue relating to strictures.

This made me think about what's the worse side effect caused by Crohns/UC. Is it pain? loneliness? Depression? Or anything that you find is the most hard hitting.

Let me know below what effects you; how does it affect you and what do you do to get on with life?

Thanks All
Click to expand...

Hi

The worst for me is that my world has shrunk. From being a socialite to almost being completely housebound. My whole life seems to revolve around bathrooms
 

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