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My ulcerative colitis story (j pouch or remicade my last options)

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Ulcerative Colitis
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Posted 7/8/2011 11:44 AM (GMT 0)
Anthony,

Ah ok...now I know what you mean by the remicade.  My rheumatologist discussed that class of drugs when I was having joint issues (but ended up just needing prescription NSAID).  It does sound very scary with an increased risk of cancer.  And I totally understand your fear of having to stop a the ostomy and not get the jpouch.  I too was young (15 years old) and had my whole life ahead.  I myself have constant fear of my pouch "breaking down" and having to return to the bag.  It is all very scary with the unknowns.  I never asked, but is it common to not be able to proceed to the takedown?

To further your questions to others, I go a bit more than others with the pouch...prob about 8-10 times a day; however, having saying that, I do always try and go before leaving the house, before meetings, etc etc.  And there is no urgency or pain...which is the important part. 

I am female and thus cannot talk about male parts.  I will say though that the surgeries did affect my fertility, which we belive is due to scar tissue.  My husband and I have 2 beautiful kids, but both were through IVF.  Again though, it would be different for you as a male.  Plus, if I was still so sick, I wouldn't have been able to have kids anyways (i.e. as a female, how can you carry and get nutrition when your GI is messed up?).

Good luck in what you decide.  I wish there was an easy answer for you.

 

Posted 7/8/2011 3:36 PM (GMT 0)
Anthony,

Try the LDN. Read my post and the myriad of others on LDN. It has not worked for all but neither has anything else, except of course removing the colon.

6 weeks is certainly worth the effort. I was going to the bathroom so much I needed a salve with pain medication in it. I know what you are going through and I HIGHLY encourage you to try this. My GI had never heard of it but neither have your doctors. I have been looking at these posts and so far have not found one single person who has had surgery who tried LDN first. I am sure there is someone out there that would fit this profile but I find it curious.

Reply to my main post if you have any other questions.
Posted 7/8/2011 4:05 PM (GMT 0)
Hi, Anthonyv.

Because they don't know exactly what you have, I don't think you should get the surgery.

I was hospitalized 6-7 weeks ago and I stopped responding to Prednisone and even to the IV-steroids, I wasn't responding well.

My doctor discussed the possibility of surgery because I have bad reactions to 6mp/Azathioprine/Remicade. 6mp caused rash, Azathioprine caused extreme nausea and Remicade infusion caused constricted airways so I passed out during the infusion.

I started oral LDN/Humira and stuck with strict dietary changes. Now I'm in remission. But if I have some heavy alcoholic drinks, I'll flare(from experience(

Despite what they all say about Remicade and Humira, they have done more good for people and chances of developing cancer due to inflammed intestine is higher than getting Remicade/Humira.

1 in 30,000 develop lymphoma according to my GI for Humira.

But remember, everyone responds differently to meds. You have to figure out the RIGHT medication and stick with it.
Posted 7/8/2011 8:05 PM (GMT 0)
     Anthony, I'm an old lady who didn't get UP (mine was proctitis) until I was 52.  I ran the gamut of meds during the twelve years I suffered with the disease and decided that surgery was the best option for me, so I had a total colectomy with end ileostomy last year and I am doing great.  However, everyone with this disease is different and everyone responds differently to the meds and  diet.

     If I were in your shoes I would try the LDN (that was one drug which was never offered to me) and the Remicade.  Remicade failed me but there are many others who have great success on it.  I would NOT worry about the Lymphoma issue.  I know several people who have suffered with Lymphoma, some have died and some are living and not a ONE was ever on Remicade or any other biologic medication.  I also am acquainted with several people who have taken and still take one of the biologics...some on Remicade, a few on Humira and one person on Orensia...not all of them suffer with UC, some have Crohn's and one has RA....not a one has Lymphoma and they are all doing well.

     Hope this helps and God bless.

Posted 7/9/2011 3:41 AM (GMT 0)
thanks for the response guys,

i think that i am going to try and go down the LDN route ( if i can manage to even get it)

i know the cancer risk with remicade is low compared to other dangerous things we do in life ie. drive a car every day
but the type of lymphoma developed from remicade is also uncurable and most people die within 2 years. If i agreed to the remicade and then developed this i'm going to feel like i've killed myself
Posted 7/9/2011 4:32 AM (GMT 0)
Anthony,

Have you spoken with your doctor about the sexuality issue? We were told that the possibility is very low (less than 1%) that there would be any permanent damage. Again, it is so important to have the very best surgeon that you can find which pushes the numbers even more in your favour.
Posted 7/9/2011 6:09 AM (GMT 0)
i spoke to my doctor a couple of years ago about it when we were discussing the surgery route then, its just another one of those things. If it happens to me what is the doctor gonna say? "oops sorry"
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