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23 Year Old, UC for 2 Years, Tried Every Med Apart From Vedolizumab. Surgery?

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Ulcerative Colitis
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Posted 6/6/2015 2:30 AM (GMT 0)
I was very skeptical of Remicade. I wasn't responding after the second infusion so the doctor upped the dose to 10 mg and gave me an additional infusion. I had infusions at 0, 2, 4, 6 then at 8 weeks. He also kept me at 40 mg prednisone the whole time before a very slow taper. It was a rough time for me. Had some pretty bad side effects where I wanted to throw in the towel but it did the trick. It has been 15 months since my first infusion and my biggest complaint now is I can't lose the weight. I am still at 10 mg every eight weeks. It seems I gain weight with each infusion. A few pounds were okay, but not twenty.

Just wanted to share so that you might try upping the dose, increasing the frequency and/or adding prednisone.

Hope you get some relief soon.
Posted 6/6/2015 3:30 AM (GMT 0)
Don't have any links. Just remembering from memory. I think they called it something different although it sounds like the same thing. It's possible they are two different things.
Posted 6/6/2015 4:31 AM (GMT 0)
I think they must be something different, I found those links in 2 minutes so if the results are that good, I doubt someone would conclude the success rate is close to 0.

And, truly no offense, but I have both provided links that show a good success rate and been through this process myself. So your dismissal of this procedure as having a success rate 'close to zero' based on no sources but from memory (which is notoriously unreliable) and then say you can't quite remember if it was called the same name irks me somewhat.

It's like claiming Santa is real, then saying I don't have any proof to back this claim up but I remember seeing him although it might not have been him actually, could be someone else. Terrible analogy but hopefully it illustrates why I would be annoyed. I know you were trying to offer help but please provide proof if you are to make such claims. Scientific integrity and all that (this is sounding so passive aggressive but I mean this in the nicest way possible).

I just don't want people to not try this treatment because of your unfounded claim because this treatment could help someone on here just like it helped me and the other patients in those studies. Instantly dismissing it as 'close to zero' dismisses my whole experience of the treatment and its benefits for me too. Hope you understand mate.
Posted 6/6/2015 7:06 AM (GMT 0)
It must have been something different because the memories I have go back years and even decades because I remember it being talked about way back during my first autoimmune disease. When I read your post I was very surprised they had done recent clinical trials on it. Don't have much extra time right now but if I do I'll try looking for what I was thinking about. Procedure sounded the same but I remember the name being different.
Posted 6/6/2015 12:28 PM (GMT 0)
I have a similar memory to Gary about the Adacolumn for treating UC; there was a member (Paul L) of Healingwell who went through the North American Trial to find out that it didn't have a clinically effective outcome so it was discontinued.

Here is the previous discussion about it www.healingwell.com/community/default.aspx?f=38&m=1592262
Posted 6/6/2015 12:44 PM (GMT 0)
To get the thread back on topic and to answer your original question, I chose to not use Entyvio prior to having surgery for a few reasons; first was that I was completely miserable and couldn't stand it any longer but my 2nd reason was that I wanted to save (1) biological for in case I needed it later on after surgery (if I had CD).

If you are really sick, you can't wait for clinical trials or new medicines to be approved for treatment, you need to use proven and effective medications for your UC. Cyclosporine is very effective in treating severe UC Flares but it requires a hospitalization. I decided if I needed to go into the hospital that it was only going to be for surgery and I wanted it over with.
Posted 6/6/2015 1:59 PM (GMT 0)
Yep. That's it ks. Thanks. I read the link in that thread (from 2009) and found it interesting that the study seemed to actually show a very good response to the treatment, only for it to disappear off the face of the Earth where now we just barely remember it.
Posted 6/6/2015 3:55 PM (GMT 0)
Anthony, I had a similar experience with UC. I had surgery about 9 months after I was diagnosed and I have been extremely pleased with my results. I take no medications for my pouch and my bloodwork is all normal. A typical day for me is 5-6 BMs with 0-1 at night. The whole story is in my blog, link below.
Posted 6/7/2015 10:07 AM (GMT 0)
Thanks pluot i will have a read now :)
Posted 6/7/2015 12:32 PM (GMT 0)
Gavin92, the NICE guidelines raise questions about the safety of white blood cell apherisis. And then say it is widely used in Japan. Quite frustrating as if it's widely used in Japan you think there'd be data on it. Then again, is blocking leukocytes through biologics and removing them through apherisis that different? Strange there isn't more about it. So often the case with IBD treatments.
Posted 6/7/2015 3:48 PM (GMT 0)
gavin: I finally had a chance to look at the links you provided. This treatment is, in fact, the very same Adacolumn that I had referred to. While I can't deny the stats that your links testify to, the fact remains that after all these years (I think your most recent link was from 2011) the treatment just hasn't, for whatever reason, panned out as expected. Your links testify to the fact that these were all short term studies only and your own personal experience was that it worked for a year and then quit. You may be right that it might have lasted longer if you had not partaken in questionable activities. Of course there is no way to know that for sure. Common sense would tell you though that this treatment, if it worked, is not a cure and, as with medication treatments (such as biologics), you would have to get this treatment at regular intervals in order for it to keep working. There is a reason why this has never been an approved treatment in over five years and I hate it when people blame this on Big Pharma, which is often used as an easy scapegoat. My personal opinion is that there probably is a high degree of short term success but that in the long run it isn't any different than any of the other treatments which work short term but if you quit them your condition will return. In other words, it is not a cure but a short term treatment option which you would have to continue on a regular basis. While you could argue that it is safer than say biologics, the cost would eventually be prohibitive for most people if it is out of pocket and I don't believe Big Pharma is behind it in not getting approved.
Posted 6/7/2015 6:40 PM (GMT 0)
Hey Anthony,

Just wanted to add my experience as well. I was really sick and was just ready to be done with this illness. I did not try entyvio because I was not sure if I was strong enough to keep going and because I had no guarantee that I could get a long term remission from the drug.

I chose surgery, but things have been very very rough. You should really make it a last resort, as if things go wrong, you can be kind of sh** out of luck. I'm two months out from jpouch connection and really suffering. I hope things will get better, but if they don't I will have to go back to an ostomy. That said, I had a great time with my stoma and am not afraid of going back to it. I had an amazing quality of life with it and would STRONGLY urge you to consider a permanent ileostomy... it's probably one of the most reliable ways to eliminate your symptoms for good.

You can read my experience here:
https://www.healingwell.com/community/default.aspx?f=38&m=3263001
Posted 6/8/2015 3:38 PM (GMT 0)
garylouisville: I never claimed it was a cure. I know I would feel much happier going to get this treatment when needed than I would getting biologics (I did do remicade but that failed for me) as it is much safer with the worst side effect being some short term nausea. Of course, only if this was privatised. The remicade treatments cost £1500 per treatment so it's not far off the cost.

I know everyone's UC is unique and reacts differently to treatments but I suggested it as another weapon in the arsenal to try before surgery. It worked phenomenally for me and that's why I suggested it.

Btw there are probably more recent studies out there, I just picked the first few I found.
Posted 6/8/2015 4:18 PM (GMT 0)
I realize you didn't say it was a cure but with the cost not covered by insurance or the national health care systems and the biologics are, this treatment is out of reach for most people unless it was a one time cure. Since the Adacolumn has actually been around quite a long time and hasn't caught on as a treatment option I'm thinking that it just didn't pan out the way early figures seemed to indicate. That seems to happen a lot for whatever reason. I do remember this procedure being talked about for my first autoimmune disease 25 years ago and it isn't used as a treatment for that anymore either, never really was.
Posted 6/8/2015 4:49 PM (GMT 0)
Can we please stay on topic here? You should start a new thread for your discussion about Adacolumn. This is a support thread for Anthony - I don't see those responses as being helpful to his situation.
Posted 6/8/2015 7:16 PM (GMT 0)
Thanks for everyones information and advice guys, i am looking to speak with a surgeon in the next few weeks to have a good discussion. J pouch is obviously going to be my preferred choice, with hopefully the option to have it done via keyhole surgery. I have had a good chat with my friends and family who have been with me over this 2 years, and they are all behind me.

I wish there was some medication out there for all of us that would just stop our bodies attacking our colons, but unfortunately for me i can't see that happening. I feel the best way for me to move on with my life is to go ahead with surgery and learn to adapt, as presently i can't see an enjoyable future living with ulcerative colitis.

If anyone else has any positive experiences living with a J pouch and how they dealt with the initial surgery, that would be awesome to hear!
Posted 6/8/2015 7:36 PM (GMT 0)
Anthony,
In case you haven't visited the site yet, jpouch.org is another good support site. If you have Facebook you can do a search for The J Pouch Group. It's private so you'll have to asked to join. That's a great resource because you get answers right away and lots of them.
Posted 6/8/2015 7:46 PM (GMT 0)
That's great Anthony!!! A large support group (friends/family) is awesome to have unfortunately here at HW there's only an ostomy forum but I agree with ByeBye about finding some good support groups specific to j-pouch as it is different from an ostomy.

Best of luck and sending well wishes your way!!
Posted 6/8/2015 9:15 PM (GMT 0)
Usually you get to the point where you know you want surgery. Sounds like you're there. Good luck and keep in touch.
Posted 7/16/2015 6:51 PM (GMT 0)
Hi all just thought i would update you on my situation. I had my first stage of 3 last Wednesday. I was admitted into hospital a week prior due to a serve flare up, 100mg of IV steroids did nothing to calm my condition, and the night prior to my operation just reinforced how much i wanted to remove the darn thing as i must of went about 50 times! And honestly its been the best choice I've ever made. Im sitting here now thinking why i put up with this disease for 2 miserable years! Obviously this disease effects everyone differently and some can live a normal life with very little medication. However some like me, nothing works and i went through 2 years living in fear of leaving my own home, lost 3 stone in weight, mentally depressed....basically was just surviving rather than living.

I have now had a sub total colectomy, which means i have a stoma for 6 months, then will have a J pouch created and finally the stoma reversed. Its only been a week since my operation and i have no regrets at all, it feels so good not to have to worry about running to the toilet all day. Yes surgery is a big choice to make, but i just wanted to let people know who are/were in a similar situation to me that there is a choice to help relieve your symptoms, don't feel like you have to struggle through life, if you can't control your symptoms via herbal or medicinal means! By no means am i promoting surgery as 2 years ago i never thought i would be sitting here as a 23 year old writing that i have had my colon removed but its a option that has light at the end of the tunnel!

Dealing with the bag and stoma has been the easiest thing about the whole ordeal, still tired and fatigue as i am tapering off steroids but in a few weeks i should be drug free. I am actually peeing more than i am emptying the bag!

If anyone has any questions please don't hesitate to ask, as i am more than willing to answer any queries people have!
Posted 7/16/2015 7:42 PM (GMT 0)
Thanks for the update. Just about everyone who has had the surgery pretty much have the same story - they wished they had done it sooner. Continued good luck.
Posted 7/16/2015 7:52 PM (GMT 0)
Thanks for checking in. Hope the rest of your journey goes smoothly. I love my J pouch......it's been very good to me. Happy healing!
Posted 7/16/2015 8:37 PM (GMT 0)
Glad you are happy with the decision
Feel better
Posted 7/16/2015 10:02 PM (GMT 0)
Good luck Anthony. It sounds like you're already getting your life back.
Posted 7/17/2015 5:43 PM (GMT 0)
To Pluot and Notsosickly girl-

How long did it take to recover from each surgery so that you felt well enough to go back to work?  I have a full time desk job at least but I find myself putting this off for fear of being out of work for so long.  I think I would prefer to take it slow and do it in three steps since I have been on some degrees of pred for 5 long years now (mainly low doses, but still) but I guess it depends on how long I am out of work each time. I only have so much FMLA, would love to hear your thoughts on this!  Thanks!

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