No remission after 20 months?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Clicky
Regular Member


Date Joined May 2008
Total Posts : 166
   Posted 5/9/2008 8:34 PM (GMT -6)   

Hi  all, I am new to the forum. 

 

I have bled every day for 20 months and have been hospitalised.   It drives me crazy.  Rather than diarrhoea – I often cant go at all but am in the bathroom 10-20 times a day with blood and mucus – often with accidents - and bood frequently fills toilet.  When I do go it is tiny tiny stools – I guess everything is so swollen.

 

I am no longer working.  I am tired and am struggling to keep my blood levels up – every month they get lower and lower.

 

None of the drugs worked and the Azathiaprine gave me serious liver problems. 

 

I am too scared to try remicade given stories on the internet and my experience with immunosuppresants so far.  Steroids do nothing at all – including the IV steroids they tried over 6 days.

 

We are now on to thinking about surgery – I have left sided colitis.

 

Anyone else with similar symptoms?  I have also tried all the alternative stuff like probiotics – etc.  But still not well.

 

Any ideas or similar experiences?

 

Many thanks.


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 5/9/2008 9:59 PM (GMT -6)   
I was in a massive flare for nearly five years. When my insurance company finally approved it, I went on Remicade and got into remission. My only other choice at that point was surgery. Colazal, Azathioprine and Entocort combined had me down to 10-15 times a day with bleeding most days, pain and extreme exhaustion. Within a month of starting Remi I was in remission.

If you don't want to try biologicals and all the other meds have been tried, surgery may be a consideration for you. You could at least have a consultation with a colo-rectal surgeon to see what's involved to help with your decision-making process.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/9/2008 10:17 PM (GMT -6)   

That was my life 7 years ago.  I opted for j-pouch surgery and have never regretted my decision.  My drug choices ran out at 6mp, this was before Remicade became an option.  If you aren't willing to try Remicade your only option is surgery.  It will give you your life back.  It sounds as if you have compromised your life for UC for too long. 

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/9/2008 11:45 PM (GMT -6)   
i had a sort of similar time, i was sick for 8 years, with pretty much no remission, save for about two months i got with remicade, and the nine months i was pregnant, after the remicade quit it got worse. I had times too when it would be just blood, and so much blood i thought i was bleedign to death sometimes. And i suppose you probably could, slowly. I had 4 hospital stays, and lots of meds, and constant sickness.
So i opted for an ileostomy, and it is great! no sickness, no blood, no meds. I know it's a huge step but like the other two posters said, you can talk to a dr about it. And if you dont want to do it, of course you dont' have to, doesnt hurt to talk to a dr about it though, maybe get some opinions. I have to tell you, that i dont blame you for not wanting to try Remicade. I went to the dr askign for the surgery and he talked me into remicade, and i tried it, even though i didn't really want to, and i wish i hadn't I did get two months "remission" out of it, but i spent that whole time waiting for the UC to come back full force and then when the remicade did start to fail, it was horrible. and it ended up that i just wasted time that i coudl have been better, trying a dangerous drug.
Now alot of people have wonderful success with remicade so it does work for some people, just not for me.
good luck to you in whatever you choose

Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 5/10/2008 4:23 AM (GMT -6)   
My longest flare was about eight months,but this was when Azathioprine was the final option in meds,and it worked for me.
If the Azathioprine hadn't worked,I would have chosen surgery.I certainly couldn't have stayed the way I was for twenty months or more!
I think if I was in your shoes now,I'd still give the Remicade a go,as surgery is still an option if it doesn't work.You have to remember the finality of surgery,there's no putting it back in after!

Obviously though,I don't know how bad your experience on Azathioprine was,so maybe you feel so much trepidation over remicade,that surgery is best for you.Hope you can get some good medical advice and make a decision that allows you to move forward and enjoy life again.
Procto-Sigmoiditis dx 1995.First Colonoscopy in ten years,on 29th Feb 2008,revealed moderate to severe Pancolitis.
Current meds;Awaiting blood work before re-commencing Azathioprine.Pentasa 2 x 500mg 4 x daily.
Got Ryche?


mitch33
New Member


Date Joined Mar 2008
Total Posts : 11
   Posted 5/10/2008 5:16 AM (GMT -6)   

Hi nice to meet you

I don't often reply to posts but yours seemed a bit like me, I too feel like things have gone on to long only seven months for me. My main symtoms have been urgency and bleeding and wind, I have 15cm proctitis, I am on my first round of prednisolone which has not done a thing and I am also taking 1g pentasa suppositories. My HB is also now very low at 8. I am going back to my GI on tues for a flexi sigmoidoscopy to see whats happening.

I really hope you find some thing that works for you soon I can only imagine you are at your wits end.

Take care

 

 


Colonoscopy Feb 2008
14cm Proctitis
1g Pentasa sup
400mg iron
Pred (tapering from 30 mg)
800mg calcium and vit D


mmccaus
Regular Member


Date Joined Apr 2008
Total Posts : 20
   Posted 5/10/2008 5:01 PM (GMT -6)   
I had similar reservations about Remicade after reading lots on the internet. But I would caution you to beware of taking all the stories too seriously. Yes, there can be bad reactions, but all it usually means is you have to stop taking it. Most of the really scary stuff represents an extremely small fraction of the people who have used Remicade. I'm no drug pusher, believe me, but know that most people who have no reactions to the drug and who benefit from it are not the ones whose stories get out there most often. You are going to find lots of the bad stuff and only a few of the good, so the perception gets skewed away from the reality. The people who have a great experience and success with any drug are not usually putting their stories out on the internet because they have gone on with trying to get their lives back to normal. All that said, I decided to try Remicade with hesitations and still some fear, but now I've had 2 infusions, no adverse reactions, and I am seeing major changes in my UC symptoms already (it's now 17 days since the 1st infusion). No, I'm not in remission yet, but after a year-long flare that sounds a lot like yours, my bathroom trips are way down, bleeding is almost completely gone, pain/cramping is much much less intense... I could go on, but you can imagine. Best wishes to you and for all of us.
M, 44, SF, CA
ulcerative proctitis diagnosed in 1989, active 3 years, but controlled with Sulfasalazine and cortisone enemas
15 year remission off all meds 1992-2007
ulcerative colitis returned May 2007, no remission since
concurrent infections at diagnosis: c-diff, cmv colitis, both treated and negative
meds: asacol, 4-3x/day
started remicade 4/22/08


slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 5/10/2008 6:20 PM (GMT -6)   

Hey Clicky,

I hope you are able to find some answers and at least some comfort here.  My story seems eerily similar to yours.  I just had my GI appointment yesterday to discuss my few remaining options.  I understand your reservation with Remicade, I too have similar reservations and my GI added to that yesterday by saying that in his opinion since I failed the other imunos (6mp and imuran) that I would probably have problems with Remicade and Humira.  He also pointed out that I would need to be on them the rest of my life (I am 38 so that is a lot of injections).  He pointed out too that if I missed a Remicade injection or we altered the treatment too far that it could cause my system to reject further treatments.  Now that was coming from my GI not the surgeon so take it or leave it but if a GI is willing to pass me off to a surgeon made me think that maybe I should think about it.  With that knowledge I decided that I would have to have a "going to make it to all my injection and pay for it myself if insurance doesn't" mentality for the next 30 plus years if I thought I would live to 70.  Instead I have opted to have a surgical consult.  I go talk to the surgeon this Tuesday.  The options sound promising and my hospital stays have been rough and getting rougher each time (ICU last time).

I would have a consult with the surgeon if I were you.  By agreeing to talk it is in no way a guarantee that you are willing to have the surgery.  You can back out anytime if you don't want to go that route but to have the information about what it would include could be valuable for you to make any decisions.  I have been researching it for a while now and there are still a lot of questions that I have and many things I need to mil over before I make that possible permanent decision.  It is ultimately your decision and you are the only one who has to live with that decision so get as much information about everything as possible.  I have been struggling with this bad for five years so I have researched and researched. I will be comfortable with whatever decisions I make in the future.  Good luck and God Bless.

John


  • Diagnosed with UC 2003 (but had sympoms as far back as1993)
  • Hospitalized 3/08 for sepsis, 7 days ICU due to complication brought on by prolonged use of steroids
  • Current status = flair (no remission in five years)
  • Prednisone 40 mgs
  • Asacol 1200mg three times a day
  • Protonix 40 mg twice a day
  • Levbid 0.375 twice a day
  • Calcium 600 mg


Clicky
Regular Member


Date Joined May 2008
Total Posts : 166
   Posted 5/10/2008 11:09 PM (GMT -6)   
Thank you all for your replies - it helps to know that you are not alone.

I have met with a surgeon, who said that surgery was a good option for me, but because of other nervous complications (spinal cord injury), reconnection may not work well apparently. I guess I don’t want to sign up for a bag - but also don’t want to take the drugs - I am kindove in limbo - trying to avoid the problem - but it just wont go away... I am thinking about what to do but secretly hoping it will go away on its own. Some days I think I just need to learn to live like this, but other days its much harder as you all know.

I am grateful for your responses and hope that things go well for you all.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 5/11/2008 1:27 AM (GMT -6)   
You mentioned that you've tried probiotics...are you still taking them daily? If not, how long did you try them for? It can take a while for things to kick in (including probiotics) and probiotics are pretty essential for IBDers since we tend to have bacterial over-growth issues which in turn exacerbate our symptoms.

Also, which probiotics did you try? There are so many, I've tried a few different kinds but noticed none of them worked the way primadophilus reuteri made by natures way does...it's helped me immensely along with bee propolis, fibre supplements, omegas 3-6-9, vitamin A and vitamin C-calcium ascorbate...this is all that I take (including chamomile tea) daily with no oral RX for my crohns-colitis (cd affecting the colon). I have found great improvements from the above mentioned along with proper healthy diet (no sugar, caffeine, animal fat, fast-foods, processed foods, sugar alcohols which are anything ending in "tol" sorbitol ect) and regular exercise...I know everyone is different and no matter what some do end up needing surgery which I hope is not your case.

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


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/11/2008 8:01 AM (GMT -6)   
You might want to inquire about a k-pouch.  Those are internal and involve self catherizing. 
 
Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, September 19, 2018 7:11 PM (GMT -6)
There are a total of 3,004,877 posts in 329,179 threads.
View Active Threads


Who's Online
This forum has 161751 registered members. Please welcome our newest member, Roadranger82.
322 Guest(s), 10 Registered Member(s) are currently online.  Details
mattamx, JNF, Michael_T, getting by, Tudpock18, sierraDon, FLBeachgal, Relentlesswill, CCinPA, halbert