I need alot of input from you all **warning graphic pictures**


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As some of you know, I have serious medical issues. Well, last month, I was recently diagnosed with what the doctors call a RARE condition named SCHLEROSING MESENTERITIS.

 

simply put, there is a membrane, a lot like an apron on our intestines, (Area inside blue box) is a film but also contains the nerves and blood vessels to the bowel that gets inflamed which mine is a calcification of mine.In time, it could make it hard and cause my bowel to rip open killing me. At this point, they tell me there is nothing they can do to make it better

 

test%20mesentery.jpg

 

before I go on, with my other assortment of issues, I get alot of bloating, cramping pain, the kind where it leaves me lying down and stuck at home until the episodes

subside. when I end up in the ER, I'm asked about blood in my stools, pain etc. the norm for me.

 

So the doctors prescribe me a medication named AZATHIOPRINE 50MG tablets. To be taken 1/2 tablet by mouth for 5 days. then take 1/2 tablet twice a day for 5 days

 

My problem and i will NOT take this medication is because of the side effects. mind you in my case, I get chronic bowel pain associated with loose stools, the mesenteritis and short bowel syndrome as well. Here are the side effects that were never explained to me so I took it upon myself to say no due to the potential dangers.

 

common side effects

 

 

More common
  • Black, tarry stools
  • Bleeding gums
  • Blood in the urine or stools
  • Chest pain
  • Cough or hoarseness
  • Fever or chills
  • Lower back or side pain
  • Painful or difficult urination
  • Pinpoint red spots on the skin
  • Shortness of breath
  • Sore throat
  • Sores, ulcers, or white spots on the lips or in the mouth
  • Swollen glands
  • Unusual bleeding or bruising
  • Unusual tiredness or weakness

 

Rare side effects. as of late I've been affected by side effects from various meds given to me at this point and hospitalized for those so, I'm hesitant on taking anything I don't know about nor drugs doctors couldn't tell me about in the first place

 

 

Rare
  • Abdominal or stomach pain or tenderness (remember I get hospitalized for these pains already..)
  • Clay-colored stools
  • Dark urine
  • Decreased appetite
  • Fast heartbeat
  • Fever (sudden)
  • Headaches
  • Itching
  • Loss of appetite
  • Muscle or joint pain
  • Nausea, vomiting, and diarrhea (severe)
  • Redness or blisters on the skin
  • Swelling of the feet or lower legs
  • Unusual feeling of discomfort or illness (sudden)
  • Yellow eyes or skin

 

others

 

 

Incidence not known
  • Abdominal or stomach cramps
  • Diarrhea
  • Difficulty with breathing
  • Difficulty with moving
  • Fat in the stool
  • General feeling of illness
  • Pale skin
  • Sores on the skin
  • Sudden loss of weight
  • Troubled breathing with movement
  • Weight loss

 

my wife and I are NOT keen on this medication. I and my wife feel there are too many side effects and some rather serious looking that in my eyes, it is not worth the risk.Doctors did say there is nothing they can do to make it better, it is a rare issue I'm the first case in 20+ years they have seen. I'm not too keen on the fact the doctor who gave me this med couldn't tell me the side effects ahead of time so, he wasted both our time with this.

 

I can't safely say that I would take this medicine knowing all these side effects. too many negatives in my wife's and my eyes to risk it. would you?

 

thanks,

Chris

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:x

 

 

 

 

 

 

 

wtf is that?

 

 

 

 

 

:x  :x  :x

 

 

 

 

something from the alien movie?

 

 

 

 

 

:x  :x  :x  :x  :x  :x  :x  :x

 

 

 

 

 

 

I thought you needed our input on the community's "graphic picture" policy, man! 

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I'd give it a go and monitor the situation closely and stop taking it if the side effects appear worse than you want.

 

Many medicines list possible side affects but quite often this is just to cover them and you won't suffer from the side effects at all.

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Side defects are are you are probably are varying depending on the patient. The doctors gave you the medicine for a reason, and with pills with severe side effects they will generally evaluate shortly after to see if you suffer form them and if so if they can instead use some other medication.

So the best option would be for you to take the meds for at least a week or so and see how you react.

Biggest problem with medicine today is the internetand patients reading up and self diagnosing or reading up on medication and thinking their meds are dangerous and they will get all the side effects.

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Didn't read the post properly just skimmed through it but as Mike said, a lot of side effects are just listed and the most likely case you won't suffer from any of them at all.

 

You could look up reviews from patients and see their experiences... If the medication is only for 5 days and it will ease some of your long term problems, then the side effects really don't seem bad at all.

 

You could also get an opinion from a different doctor.

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Generally I think of it like this: take the medication or face potential death.

Only you are able to decide if the life you have by taking the medication is worth the side effects. The fact that you haven't started taking the medication makes me wonder though. How will you know what kind of life you have after taking the medication if you don't try it first? You can always stop if you don't feel like it anymore.

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:x

 

 

 

 

 

 

 

wtf is that?

 

 

 

 

 

:x  :x  :x

 

 

 

 

something from the alien movie?

 

 

 

 

 

:x  :x  :x  :x  :x  :x  :x  :x

 

 

 

 

 

 

I thought you needed our input on the community's "graphic picture" policy, man! 

 

i posted a picture of the membrane itself. so you know what I'm talking about. sorry if it grosses you out. I put a warning in the title for folks like yourself with stomach issues 

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i posted a picture of the membrane itself. so you know what I'm talking about. sorry if it grosses you out. I put a warning in the title for folks like yourself with stomach issues 

 

I was just kidding. I'm not that sensitive.

 

As for the side effects, even if it affects only 1% of the population, they still have to disclose it, so don't worry too much.

 

And if you don't trust your doctor, you can always get a second and a third opinion if necessary especially when it comes to something as serious and rare like this condition.

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well to add to this, last month I was taking Dicyclomine which is supposed to inhibit the nerve receptors in the bowel and calm them. However, a few days into taking this medication, i was quickly sent to the hospital with severe side effects from the drug and they ended up admitting me and in 2 days, they pumped 11 bags of IV fluids in me because it caused me to dehydrate so severely.

 

so this is why I'm cautious and careful to ask and research. But from a common sense angle, I wanted to ask you all, what you would do is all. I found out the ER people were freaking out because they almost lost me from what I found out from my nurse on the ward. 

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well to add to this, last month I was taking Dicyclomine which is supposed to inhibit the nerve receptors in the bowel and calm them. However, a few days into taking this medication, i was quickly sent to the hospital with severe side effects from the drug and they ended up admitting me and in 2 days, they pumped 11 bags of IV fluids in me because it caused me to dehydrate so severely.

 

so this is why I'm cautious and careful to ask and research. But from a common sense angle, I wanted to ask you all, what you would do is all. I found out the ER people were freaking out because they almost lost me from what I found out from my nurse on the ward. 

 

In this case this should now be on your notes and i'd imagine the new meds are in a totally different family of meds to that one.

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Im just gunna be blunt
Take the medication ya pansy.
Id rather take any of them side effects to spending a lifetime in a vase or buried when something goes catastrophically wrong. 

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Im just gunna be blunt

Take the medication ya pansy.

Id rather take any of them side effects to spending a lifetime in a vase or buried when something goes catastrophically wrong. 

well I appreciate the input mate!

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Neowin isn't the right place to ask for medical advice to be honest. As someone who's had issues with ulcerative colitis before I would suggest trusting your doctor and taking the medication regardless of the side effects. Not taking it will have much worse effects.

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well I appreciate the input mate!

Sometimes its best to be blunt. Puts things in perspective alot easier :)

Or I could put the above this way "think of your wife if you suddenly just left this world"... 

Easy decision now isnt it? 

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Have you tried posting the same info on Reddit?  Ok, there's going to be a lot of armchair experts, but I seem to remember on a number of occasions where people have had good advice from other users who are experts in the related field.

 

Worth a shot :)

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Hey mate,

I signed up to the forums just to reply to this topic. I attempted to post on another profile that didn't require me to sign up....maybe it's not the same chrisj1968 as you here? ....So I decided to bite the bullet because a) I needed to share some info with you and b) I probably should join just for the fact that I use the software that these guys provide and I probably should help out with some tutorials in the wiki for users I see bitching and complaining that the info isn't up to date....and I have details that these members would want/need/should read (see I am a poet and don't know it  :woot: )
Anyway I want to let you know that I share a similar condition to what you have. I have what is known as ulcerative colitis. It has pretty much the same symptoms as you have described here, although I think maybe different causes? Crohns disease is another one but even worse again. I know one thing though, they have been prescribed you the same medication as what I was put on. They also had me on some other nasty **** like cyclosporin (really bad stuff) and corticosteroids (totally screwed my hormonal system long after getting out of hospital).
What they don't express to you about these medications, is that although they maybe doing you wonders for getting your physical self back on track and assisting with the repair of your insides.....the problems that they cause you mentally are just disturbing.
Short temper, suicidal thoughts, depression you name it!
They are fkn REALLY bad. Most doctors won't admit any of those side affects to you either (as if the listed ones weren't enough as is was, eh?) and/or they are in denial that they exist. Fortunately I had a fairly understanding specialist/doctor.

Anyway I won't harp on the doom and gloom stuff to you, there is a positive side to my post now. I can help you get off these nasty meds and stay off them. :) 
Here in Australia my specialist (thankfully) is of the world's top gastroenterologists. I had a challenge on my hands though convincing him with my condition as bad as it was that I was going to get off these medications. To give you an idea....nearly 3 years ago I was fit and at the peak of my physical form. I am only 170cm tall and was at the time an 82kg ball of muscle....that was to be short lived  :| . I ended up rushed to emergency twice in 2 weeks and was basically put on a drip for a month.
I can honestly say leading up to going to hospital felt like the worst I have ever felt in my life. Needless to say I went from 82kg fit and healthy to 59-60kgs and skinny as a rake :/ ....all the hard work gone :( with the 22kilos of body mass. I am naturally a small frame so 22kg is a lot to loose for someone like me. As you can imagine I was pumped to the hills with all sorts of this nasty crap medication.
I studied each of them, and decide to make a change in all aspects of my diet and lifestyle. My speciallist told me that I will be on some of the medications for the rest of my life weather I like it or not  :cry: It was either that or have my whole bowels removed. I refused to face that fate. Like your self also...I bet you will do and try anything to avoid the the same fate.

I had heard of all sorts of crazy alternative therapies being spammed across the web, some of them I believed to be dangerous and possibly setting people on a course for disaster; I think this is also what my specialist thought when I suggested that I was looking into alternative therapies.
I am sure he had heard it all before too, so I reassured him that I was not just going to jump off my medication and on to some whacky hippy cr@p from the jungle. He was a little bit more relieved to hear that.
As time went by I was constantly in for check ups, tests and visits... I think he began to understand me and he was becoming more open with how things work. Explaining to me stuff that he admitted he didn't try to explain to other patients just because they wouldn't understand it if he tried lol.
He knew my background was in health &fitness (hobbie/interest) and qualifications in Applied Sciences, so I wasn't being a stupid hippy. I discussed openly how these current medications were working on me; their "mode of action" if you like to call it? and so forth.
I made a goal to stick to the medication he prescribed and at the dosage/amount (not change the dosage unless he gave the green light).however what my main goal was reduce the duration I was on a dosage for   :shifty: ....all of course agreed to by him. I pretty much told him what I was doing each step of the way; why; and what his thoughts were?
Naturally most times he expressed concerned at anything unorthodox cause it was unorthodox.... but to his surprise I was making drastic improvements; Improvements that he could not deny....to the point where it was totally undeniable! :D  Tests were showing that I was getting levels of patients that were in remission for like 2 years!!! He couldn't believe it. Then he actually started paying more attention to what I was doing; what I was using and my own doses etc. He started to ask me more and more questions but more inquisitive rather than concerning. That made me super happy.
I walked into the clinic one day and the specialist goes 'Hey! I got something I want to show you, quick lets grab an office or media room where I can bring up this stuff the PC'
We sit down and he logs into this private medical database. Basically its the medical frontier land where they share information on developments; testing; clinical trials etc etc....basically everything that goes on before medication makes it to the shelves. He had discovered that one of the natural products I had been using (in combination with many others) was about to start a major clinical trial for treatment of ulcerative colitis. He was blown away by the fact that I was telling him how it worked and that was exactly the grounds on which they were testing for.

Now as a result of all this, I have pretty much ditched all medications. I still take a very very low does of a "maintenance type" medication. It's used to keep me more alkaline, but other than that I would say that it isn't even necessary. I only keep taking it cause it has no side effects and it can't hurt to stay on it. My specialist admitted to me that he never thought he would ever see the day of me taking that type of medication considering how bad my condition was when I went in to hospital. He was still very wary though and cautioned me about if things change bla bla bla as I was walking out the door. That was over 3 years ago now haha  :laugh: I have not been back to the clinic since. I can never say that I am 100% cured as it is considered a degenerative disease. Likewise your self, I bet you have probably heard all sorts of stuff with what you have?

So hold your head up bud, there is still hope. All I can suggest is read read read and read some more. Don't listen to everyone, don't believe the doctors that your doomed....but also don't just take their recommendations with a pinch of salt either. You kind of need to be on top of everything they are saying. Ask heaps of questions....ask why? Why why why? Not in an annoying sense, but a discovery sense if you understand what I mean? When you understand why and how things work, you can search out your own supporting alternatives that may either give relief or more......but be careful of things that make you feel worse. Start a food diary. That will help.

Anymore advice, questions or what ever just send me a PM and I can point you to a few sources for you to start reading for your self. I am by no means clued up on your condition either so what applies to me most likely won't apply to you as well. Keep that in mind also.

Take care

Peace.

Jarmez

PS: Excuse my long post. I know most of you won't even bother reading it when you meet my wall of text, but I posted this for the OP and I am sure he will appreciate (I hope).

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