Ready for my monkey rectum replacement

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snappy
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Date Joined Sep 2005
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   Posted 5/14/2009 8:13 AM (GMT -7)   
I started Remicade about two years ago to heal a terrible fissure. It worked! But almost right after I developed a superficial fissure which was so minor compaired to fissure #1 that I denyed it for years and just dealt with the pain. However, I decided to get another colonoscopy this year in fear that I might lose my job and not have the money for the procedure later. The GI saw the fissure and bumped me up to the max dosage of Remicade. Now, only a week later, the fissure seems worse. What is going on? Has the stuff quit working? Other than my fissure my guts are completely normal. The small ulcers I had in my terminal illeum are gone. I have never had any other symptoms: no diarhea, no constipation.
 
My GI said if the increased dosage does not work then he will switch to another biologic but I don't have hope for that since Remicade is the one that is supposed to cure rectal issues.  I've been talked out of surgery. What to do???
Bad fissure Feb 2005, still have it January 2006. On Pentasa and Imuran 100mg. Some slight swelling and ulceration of terminal ileum. No other symptoms. Now on Remicade!


aoccc
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Date Joined Feb 2005
Total Posts : 455
   Posted 5/14/2009 8:44 AM (GMT -7)   
hmmm...i've been to the zoo, i think i'd rather use a different animals rectum.
SCD since 01, remission since 01, occasional random junk food breaks :)
No meds ever.


snappy
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Date Joined Sep 2005
Total Posts : 675
   Posted 5/14/2009 8:46 AM (GMT -7)   
Yeah, and I might start throwing stuff around. OK, I'll take the cyborg rectum.

Bad fissure Feb 2005, still have it January 2006. On Pentasa and Imuran 100mg. Some slight swelling and ulceration of terminal ileum. No other symptoms. Now on Remicade!


pb4
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Date Joined Feb 2004
Total Posts : 20576
   Posted 5/14/2009 10:58 AM (GMT -7)   
That sucks snappy, I've heard the deeper the fissures are the loner they can take to heal and surgery is the last option, so I guess your options are to wait it out and see if the meds will finally heal it or look at surgery as an option (who ever talked you out of it might not have another choice) or maybe a bionic rectom?

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


snappy
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Date Joined Sep 2005
Total Posts : 675
   Posted 5/14/2009 11:06 AM (GMT -7)   
Oh well, things could be much worse for me so I try to stay calm. It's just such a mystery that all I have are fissures but they won't go away.

Bad fissure Feb 2005, still have it January 2006. On Pentasa and Imuran 100mg. Some slight swelling and ulceration of terminal ileum. No other symptoms. Now on Remicade!


orngie
Regular Member


Date Joined Feb 2009
Total Posts : 161
   Posted 5/14/2009 11:21 AM (GMT -7)   
I'd go for the bionic rectum. Easier to replace parts when they wear out than with the monkey rectum. Plus, you could call yourself The Six Million Dollar Butthole!

;)

snappy
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Date Joined Sep 2005
Total Posts : 675
   Posted 5/14/2009 11:26 AM (GMT -7)   

I've already started calling myself the Million Dollar Rectum because everytime I get a statement for a Remicade treatment it's $7,000. Now, it will be closer to $15,000 since I doubled my dosage. Times 7 a year is $105,000. In ten years it would be over 1 milion dollars!! Just so my butt doesn't hurt!!!!

I told my wife it makes me feel kind of guilty to be using that much money but she tells me it's not my fault that the drug costs such an insane amount of money.


Bad fissure Feb 2005, still have it January 2006. On Pentasa and Imuran 100mg. Some slight swelling and ulceration of terminal ileum. No other symptoms. Now on Remicade!


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 5/14/2009 3:40 PM (GMT -7)   
Snaps, what other therapies have they tried? Have they used botox injections, for instance?
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ivy6
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Date Joined Sep 2005
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   Posted 5/14/2009 9:26 PM (GMT -7)   
Keep it clean, please, folks.
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PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 5/14/2009 9:28 PM (GMT -7)   
Oops. My apologies for the same. I would be careful in future. Thanks and sorry once again.

On a different note, do they really replace rectum with monkey or other animal's rectum. In my case they created with my own small intestines.

I am curious to know.
45 years Male Attorney
Diagnosed UC October 1989
 
Had two stage J Pouch Surgery Nov 2005; Take Down March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
 
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle: Albert Einstein
 
"What you are aware of you are in control of; what you are not aware of is in control of you."
 


snappy
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Date Joined Sep 2005
Total Posts : 675
   Posted 5/15/2009 4:28 AM (GMT -7)   

Ivy, My GI believes Botox to be a temp solution when it comes to healing crohn's fissures. It stops the spasm for awhile and the fissure goes away but then the conditions for the fissure are set up again as the Botox wears off.

On a bad note, I saw blood this morning so I am actually getting worse. One week after my Remicade was doubled. Should I wait for the new dosage to kick in or call it a failure now?

 


Bad fissure Feb 2005, still have it January 2006. On Pentasa and Imuran 100mg. Some slight swelling and ulceration of terminal ileum. No other symptoms. Now on Remicade!


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/15/2009 4:32 AM (GMT -7)   
:-( I'm sorry, Snappy.

Blood isn't *necessarily* because of your Crohn's, though. Might you have a hemmie?

Re botox, isn't even temporary relief helpful?
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snappy
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Date Joined Sep 2005
Total Posts : 675
   Posted 5/15/2009 4:38 AM (GMT -7)   

The blood is definately from my fissure. It was just on the TP.

I know what you mean about temporary relief being better than nothing, but this battle has been going on for four years. I just want something done to end it. I have a way of dealing with the pain which works pretty well but it's insane: I wake up at 3:40, have my bm (yep, like clockwork!), take a warm bath, eat breakfast and go back to sleep by 4:30 and sleep until 5:40. I am sleeping off most of the pain. However, the other day I missed my morning BM and ended up going that afternoon and realized just how much discomfort  still have. Urghh!!

 

Thank you Ivy.


Bad fissure Feb 2005, still have it January 2006. On Pentasa and Imuran 100mg. Some slight swelling and ulceration of terminal ileum. No other symptoms. Now on Remicade!


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/15/2009 5:04 AM (GMT -7)   
This is ridiculous. We joined this forum on the same day, Snaps, and that was AGES ago and you were in unsustainable amounts of pain *then*. It seems crazy that you're still struggling now.

What help are you getting with pain management?
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ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 5/15/2009 5:11 AM (GMT -7)   
.... Another idea: could you give yourself an enema of a local anaesthetic before you do your bm? Something like Proctosedyl could help, and I think it even comes with its own enema applicator thingie.
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snappy
Veteran Member


Date Joined Sep 2005
Total Posts : 675
   Posted 5/15/2009 5:12 AM (GMT -7)   
Ivy,
 
I wouldn't consider main pain the last few years a problem. It's less than hemes, about 10,000,000 times less than my first fissure. I'm sure if I said I was in pain my GI would hand out Tylenol 3 or something. But my way of dealing with the slight pain is my morning schedule. I have become so used to it that I bet if I was healed I'd still get up at 3:40. At the same time, I bet if I told my GI about my schedule he'd have a stroke and yel at me for not being more forthcoming about my pain. Just seemed like the Remicade had given me my life back, mostly, and that I was happy with the moderate pain I was in. I mean, my wife deals with back pain and headaches: my pain is perfectly acceptable compared to that! But I'd love to end it if I could.
Bad fissure Feb 2005, still have it January 2006. On Pentasa and Imuran 100mg. Some slight swelling and ulceration of terminal ileum. No other symptoms. Now on Remicade!


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/15/2009 5:15 AM (GMT -7)   
Ah, so this is a different fissure? I'm glad to hear it, because the first one sounded terrible.

Still, Snaps, it doesn't sound as if your quality of life is too brilliant. I agree; your gastro would probably be horrified if he knew you were getting up at 3.40 just to deal with the pain.

It's so frustrating: there must be some way for you to get some relief.
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snappy
Veteran Member


Date Joined Sep 2005
Total Posts : 675
   Posted 5/15/2009 5:18 AM (GMT -7)   
Yeah, diff fissure. I put my GI to work on the first one after I told him I had considered suicide because of it. Yes, it was HORRIBLE!!!! Like being stabbed every morning and in crying pain for 4 hours after that every day. That will get you to the doctor in a hurry! 

Bad fissure Feb 2005, still have it January 2006. On Pentasa and Imuran 100mg. Some slight swelling and ulceration of terminal ileum. No other symptoms. Now on Remicade!


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/15/2009 5:23 AM (GMT -7)   
How did they sort that one out? Could they do the same thing again?
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ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/15/2009 5:24 AM (GMT -7)   
Sorry, misread, the Rem healed the first one, right?
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snappy
Veteran Member


Date Joined Sep 2005
Total Posts : 675
   Posted 5/15/2009 5:27 AM (GMT -7)   
That's right. Remicade healed it all the way. Strangely, my new fissure is on the opposite side!

Bad fissure Feb 2005, still have it January 2006. On Pentasa and Imuran 100mg. Some slight swelling and ulceration of terminal ileum. No other symptoms. Now on Remicade!


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/15/2009 5:31 AM (GMT -7)   
... And have you had second opinions from the leading experts on whether the problem can be fixed? If so, what did they say?

G'day and goodnight, Snaps; I'm off to bed.

i.
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snappy
Veteran Member


Date Joined Sep 2005
Total Posts : 675
   Posted 5/15/2009 5:32 AM (GMT -7)   

Surgeon says yes, GI says don't do it unless you have to since you'll lose rectal tension which could be bad when I'm older.

 

Good Night!


Bad fissure Feb 2005, still have it January 2006. On Pentasa and Imuran 100mg. Some slight swelling and ulceration of terminal ileum. No other symptoms. Now on Remicade!


Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 5/15/2009 6:44 PM (GMT -7)   
I have major fissures too...Heck, I haven't been able to sit for about 2 years...my GI prescribed N 1.5%Nifedipine 0.3% / Lidocaine. It is a compounded creme (they don't necessarily make this pre-mixed by a particular company). It was published a year or so ago as the "chemical" surgery. I apply this 3x a day...it has stabilized them (though I do get new ones if there is too much pressure...like the exploding D)...and you don't have to lose...hmmm how do you say...rectal tension... idea and when the pain gets too intense...my doc gave me some lidocaine jelly...only to be used sparingly...this is the same stuff they use to do those probes ...
"The earth laughs in flowers"

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