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cyclosporine?

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Posted 7/11/2013 4:23 PM (GMT 0)

iPoop said...
ByeByeUC, I was curious about your jpouch. You said you typically empty out the jpouch 4-6 times per day with no urgency, when you pee. So, are your bms spread randomly throughout a 24 hour period (even at night)? Or are they more like my uc, where I got a lot of times all at once, first thing in the morning, and then don't have to go for the rest of the day? As for me and my current uc, on a typical day, I have 2-3 bms within 2 hours of waking up, and then I am free from having to poop again for another 24 hours.

My typical day is like this:
Get up in the morning at 7 am and go to the bathroom.
I usually do not go again until 3pm, then around 6pm, 8pm and before I go to bed I try to empty even if I do not feel like I have to go. In the beginning I would have to get up once at night to go but now I sleep thru the night. If it's a day where I am at a party or a bbq and I am picking at food all day long then I will have to add about two more times that I go. It doesn't really matter how many times it is. The important thing to remember is that there is no urgency, blood, cramps, or pain and the disease is gone. If I only pooped 2 or 3 times a day with my UC I would never of had surgery. I was going 20 to 30x a day with UC.
Posted 7/11/2013 5:05 PM (GMT 0)
Thanks ByeByeUC, I was just curious what it's like. I certainly don't need surgery now, but on occasion I've had the "what if I need it sometime" running in the back of my mind and I want to know what life is like for those with a j-pouch ahead of time (rather than suddenly being in a bad flareup, not responding to meds, and have no time to research it or think it through). Certainly, the urgency is the real mind-killer for uc, me worrying about sudden urgency is terrible as it always turns up when I am away from the toilet for a while (on a long car ride, stuck in traffic, in an unfamiliar store, etc.) even when my uc is in a good place and things haven't been bad. So it would be wonderful not having to worry about urgency anymore. The meds don't bother me, no real side effects (other than some nuisance stuff from pred which I am currently tapering off of) but I certainly wouldn't miss the med copays, for the many meds I get, on a monthly basis. I'd spend that money on something fun instead!
Posted 7/11/2013 5:41 PM (GMT 0)
iPoop,
Well, hopefully you will never have to worry about having surgery. It saved my butt (no pun intended!) but the surgery itself is no walk in the park! :)
Posted 7/11/2013 5:46 PM (GMT 0)
Andy, that's the whole point- obviously I haven't found a med that works great for any length of time, hence the back & forth with surgery! I have yet to hear of a "failed" surgery, in all my years on this & the ostomy forum. I have no problem switching to another biologic, but those meds are so brand new, there's no way to assess the long-term risk of them. Which hasn't stopped me from using them, but it's tough to say "oh, this is safer than this..." when they're so new to the market. Permanent ileo surgery has been performed for years & years & years, since around the 1700's. Very little risk. I'm not referring to any type of pouch, just a straight ileo. Ah well, the fight continues!
Posted 7/11/2013 5:54 PM (GMT 0)
Eva Lou, certainly an Permanent ileo surgery has less risk of complications than a j-pouch (no chance of pouchitis, no need for additional surgeries to fix issues, and no chance of j-pouch failure). I'd say the downside are blockage in the stoma (which can be painful), the ongoing cost of supplies for the bags, and if there are issues with the connection of stoma to bag then rashes due to the feces being in contact with skin around the stoma (which can be painful).
Posted 7/11/2013 7:04 PM (GMT 0)
Bye Bye,

I am so glad to hear a good story as I have heard so many bad ones. The doctors I go to do not give a good impression of it, and in some ways I would rather do the surgery now, while the rest of my body is in good condition. However, the doctors will not allow it and I am forced to use the drugs. I have to go NHS as I cannot afford private, but in ways I would rather be med free then have problems with the rest of my body and get side effects from the drugs.
Posted 7/12/2013 2:13 AM (GMT 0)
@hellokitty- that sucks that one is not allowed the option of surgery; here in the States it s up to the patient- assuming one is a candidate.

@ipoop- well, blockages are an equal risk for both ostomies and the jpouch. However most blockages are due to scar tisue accumulating fom multiple surgeries on the gut plumbing. So far, 2.5 months since my end ileo surgery, I have not had any such issues- I seem to tolerate a normal varied diet fine now.

As for stool next to the skin- that is what the wafer skin barrier next to the skin is designed to prevent- and they are highly reliable and work well. I have had zero leakage of any sort other than a tiny bit onto the surrounding skin two times when I was still learning the ropes and incorrectly applied the wafer. Virtually any such issue has a technical solution to prevent it via various varieties of ostomy supplies. ostomy supplies are a bit pricey (could add up to a $200+ a month) without insurance but with insurance are negligable.

Words cannot decribe the joy of being totally, 100% free of pain amd urgency. I never thought , after years of fighting the idea of surgery tooth and nail (like most on this forum) that I'd say it, but I do now wish I had done it many years ago. Oh well, live and learn.

Post Edited (Probiotic) : 7/11/2013 8:17:14 PM (GMT-6)

Posted 7/12/2013 9:00 AM (GMT 0)
I was given continuous IV cyclosporine in hospital after IV steroids failed to work. It was really slow to do anything and I was told by the Gastro team that I had to have my colon out. I was hysterical as I was very against surgery and thought it would never happen to me ( I remember posting on this forum crying about it from my hospital bed). It did manage to improve things slightly in the end so that I was able to escape from the hospital still with my colon.

I was on oral cyclosporine after leaving hospital and was told that I couldn't be on it for longer than three months as it wasn't safe. I hated the side effects from it. I had headaches and jumpy vision, felt nauseous and had tingling in my hands and feet. I also couldn't have the shower too warm as my head and feet would feel like they were burning! It made everything taste awful as it really stinks and I kept my distance from everyone as I was afraid to breathe near them!
It only ever worked well enough that it allowed me to leave hospital, but I was still flaring badly. Any little improvement didn't last and my flare intensified while still on it. I had a last ditch attempt attempt at getting my flare under control with LDN, which didn't work for me either until I had no choice but to have surgery.

Good luck Eva with whatever you decide to do, it's tough trying to figure out which decision is the right one.

Pluot - what do you mean when you say the side effects from cyclosporine can last a lifetime?
Posted 7/12/2013 11:38 AM (GMT 0)
I really don't think I'd try cyclosporine..... seems as if most of the users hated it, & were back into flare mode within 4-6 months anyway. I may try to go to weekly Humira shots, may try Simponi, may stumble along like I'm doing... Thanks for all the info, everyone! It's a losers game, dealing with UC- the house always wins!
Posted 7/12/2013 3:53 PM (GMT 0)
Joanna - Cyclosporine side effects usually resolve after the drug is discontinued. They don't always. Some of the more serious side effects that can be long lasting are kidney disease, hypertension, neuropathy, and tremor. It can also induce or worsen gout. Much like prednisone, it's almost certain that you'll have bad side effects during treatment and then it's a crapshoot as to whether effects will persist longterm. I didn't realize you had your surgery -- how are you doing?

Eva Lou, I just gotta say... the house did NOT win on me. I'm still alive and I feel pretty darn good. I'm typing this message to you from my office, a place I didn't set foot in for six months last year! I'm working full time and feeling good. Surgery is a nuisance but I found my way out of the hole I was in, and you will too. No treatment should be considered "giving up".
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