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Crohn's Disease Forum » Your Story » 18 months on Pred, Pill-Cam results - now transitioning to Pentasa


08-07-2015, 06:25 PM   #1
Rev-Rog
 
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18 months on Pred, Pill-Cam results - now transitioning to Pentasa

Hi Team

Haven't been here for several months, been very busy, not to mention being diagnosed with Epilepsy and my wife having two brain surgeries :0)

However, just saw my GE Specialist last week to discuss the results of the Pill Cam three months ago. Camera showed portions of ulcers in the small intestine, so will be going back in another 6 weeks for biopsies. In the meantime I am weaning off Prednisone of which I've been on for the last year and a half, and have started on Pentasa, which I seem to be tolerating ok and hopefully it will keep me in remission.

Life is looking hopeful for me, after having been in a chronic flare for the last 20 years following open surgery Nissen Fundoplication.

Having the Pill Cam made all the difference with working towards a diagnosis of IBD.

Rog :0)
08-07-2015, 09:07 PM   #2
Caitlin84
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I cannot imagine being on prednisone for so long. Pentasa is usually tolerated well, I hope it stays that way for you. Glad you got some good news finally.
08-07-2015, 09:18 PM   #3
Rev-Rog
 
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Prednisone is actually a miracle drug for me. It takes me out of a full-blown flare within 12 hours, and all symptoms disappear totally. Off the Pred (and no other steriods), I need around 50 Loperamide per day, as well as Anit-nause, Buscopan, and Coedine and are in constant pain and D. However, it has come with a price. I developed epilepsy. I also have survived the last 18 months on around 4 hours sleep per night, and I go a bit manic when on Pred. Serious risk of cataracts, osteoporosis and diabetes, so need to be off the Pred. Risk of these complications are pretty much reduced to zero once off the Pred. Great to be on a safer steroid though, that I appear to be tolerating, and hopefully will keep me in remission, although I need to be on the lowest dose so that my illness is present for the biopsies. I can always use Pred to bring me out of a flare in the future. Great to have some good news, as IBD can often come with a lot of darkness and worry, that only those of us who have this disease can understand and really sympathize. :0)
08-08-2015, 04:08 PM   #4
Mr chicken
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Good luck with the pentasa
But please be aware most Gi equate pentasa as a monotherapy for crohns the same as giving aspirin to a brain tumor patient - not going to help to much but not going to hurt too much either .
Pentasa is a 5-Asa so it only treats the surface of the intestine ( think cream ) which is why it works well in UC since that only effects the surface layer .
Crohns affects the full thickness so pentasa alone tends to not be enough for the majority of folks with crohns.
We were told for Ds at dx that if it was going to work we would know after 4 weeks.
For Ds it did absolutely nothing so we watched him get worse over a month.

Hope it works for you
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08-16-2015, 04:03 PM   #5
buttER
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Hi Rev
Thank goodness for the pillcam.
I am also a bit dubious about you just taking pentasa, especially for small bowel inflammation. But I know your history and how much you have had to deal with, so I am happy to hear how positive you are.
Best wishes to you and your extended family.
08-19-2015, 03:30 PM   #6
Rev-Rog
 
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Hey Team. Quick update. I've been off Pred for around 3 weeks, and started Pentasa around that time ago too. Normally after 3 weeks off Pred I would have stopped eating by now, be in an incredible amount of pain, and chronic D. These symptoms are slowly returning, but at least the Pentasa is helping. Also, the pill can revealed many linea ulcerations in my proximal jejunum, so are having biopsies in the next few months. The are looking to eliminate Ulcerative Jejunitis (which the specialist says is an 'extremely rare form of coeliac disease'). What is the absolutely best news, is that there is now absolutely no mention of IBS! It's taken over 20 years since surgery, a heck of a lot of pain and misery, but finally some results and help. I know I mentioned this before, that on another forum I mentioned how pleased I would be with a diagnosis of IBD, and that one person got really angry with me for saying that. I understand where he is coming from, but again - I am so happy with a diagnosis of IBD, as it means I can get some relief from the absolute hell of the last 20 years. I saw my GP yesterday, and he is more than willing to let me Pulse the Pred when needed to stop a flare, and then use a safer medication for maintaining remission. At last some light at the end of the tunnel

I know there will still be ups and downs, and possibly even surgery again, but just want to say 'thank you' to you all for your support and encouragement. It really does make a difference :0)
08-19-2015, 04:17 PM   #7
worriedboy
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Rev-Rog, your relief from being diagnosed after so many years of auffering is a common thing and you may find this in many forum members' stories. I pray that you find the right treatment to keep you well and ina stable remission.

But what is the treatment strategy you coordinated with your GI ? Are you going to be on any maintanance drug for Crohns, like 6mp/aza or humira/remicade ?

Nowadays most doctors dont even bother to try 5ASA, unless they see a certain reason or potential benefit for a specific case. But elsehow, they usually put you on immunosuppressant and/or biologics in order to spare the steroids as much as possible.

Good luck !
08-19-2015, 05:13 PM   #8
Rev-Rog
 
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Thanks worriedboy :0)

Whatever disease/condition I have, only responds to steroids (at least to bring it under control), and once they have done the biopsies they will be able to provide suitable and sustainable medicine. I have to stay off steroids until after the biopsies of my jejunum, and then meet with the GI Specialist a few weeks after that, to discuss long-term maintenance. My 'safety net' if all else fails with the specialist, is my local Dr who is willing to pulse the Pred and other steroids/meds that the specialist approves. I know there are serious implications of long term Pred, and hopefully another safer med will be prescribed, but even if it isn't, I would prefer 10 years of relatively good health, rather than another 20 years of the horrible pain that I've lived with over the last 20. I guess it is quality over quantity :0) I really appreciate the feedback and comments as it empowers me, and allows me to understand IBD better. One of the most relieving aspect of my experience with the specialist and my local GP, is that the diagnosis of IBS is no longer mentioned. I know IBS can be horrific, but I always knew it was a misdiagnosis for me. This is a very emotional time for me, and I guess it is over 20 years of pain and frustration, and finally seeing some hope for the future, and that I can begin living rather then dying :0)

Rev-Rog, your relief from being diagnosed after so many years of auffering is a common thing and you may find this in many forum members' stories. I pray that you find the right treatment to keep you well and ina stable remission.

But what is the treatment strategy you coordinated with your GI ? Are you going to be on any maintanance drug for Crohns, like 6mp/aza or humira/remicade ?

Nowadays most doctors dont even bother to try 5ASA, unless they see a certain reason or potential benefit for a specific case. But elsehow, they usually put you on immunosuppressant and/or biologics in order to spare the steroids as much as possible.

Good luck !
08-19-2015, 09:48 PM   #9
Madhu
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Hello, did your GI talk to you about Remicade/Humira? Since you have crohn's in small intestine, that is what usually works best. Pentasa is known to help maintain remission but not cause remission in much cases. My husband was suggested Pentasa by a local GI but as soon we saw a specialist, he dismissed it saying it wouldn't help at that stage because his Crohn's was very severe. Just a suggestion. Hope you feel better
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08-19-2015, 10:20 PM   #10
Rev-Rog
 
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Hi Aarthi :0)

Yes, once the biopsies results are done, both Remicade and Humira are possibilities, as well as others.

I originally 'tried' Pentasa around 2 years ago, and it had no effect upon my condition. However, after having been on Pred for well over a year, and in remission, I've recently been trialed with Pentasa again and at the moment it is still under control (only because the Pred put me in remission). The specialist only put me on Pentasa because I need to be on minimum meds until I've had the biopsies in a few weeks time. Once the biopsies are completed, and if in full flare again, I will use Pred to get back in remission and then other meds (including Rem and Hum) would be options, depending on the findings and what the specialist recommends :0)

To be honest, I think that my optimism and acceptance of my illness is partly why I have tolerated it for the last 20 years. It was only when I was literally dying around 3 years ago, that I became resolute to push through the excuses of the medical professionals and find a solution. In hindsight I can hardly believe the rubbish I have been told - including 'there is nothing more medical science can do for you, you just have to accept you will live an miserable life', and 'your illness is your cross to bear in life'. It was only through Prednisone that put me in full remission in 3 days, that the Dr's realized it was not IBS and is IBD. It was literally as if someone turned on a switch, and I was well, putting on over 20 kg's (I was anorexic) and feeling alive for the first time in over 20 years. I had got so bad that even a drink of water caused intense stomach cramps and D, but now I can eat anything, and my lactose and fructose intolerances have completely gone :0)

Hello, did your GI talk to you about Remicade/Humira? Since you have crohn's in small intestine, that is what usually works best. Pentasa is known to help maintain remission but not cause remission in much cases. My husband was suggested Pentasa by a local GI but as soon we saw a specialist, he dismissed it saying it wouldn't help at that stage because his Crohn's was very severe. Just a suggestion. Hope you feel better
08-19-2015, 10:37 PM   #11
Rev-Rog
 
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This is my 'before and after' Prednisone photo :0) As we all know, the real healing is on the inside, and the freedom from crippling pain and all its implications. For me it was literally turning on a switch from dying to living. I still can't believe it, and is partly why I am still so happy, even after some of the implications of Pred ( I am now full epileptic, and are having Grand Mal seizures around 4 times a week), but it is still worth it, and I would - and will - do it all over again, as these side effects are so much less than what I was living with before.


Before - and nine months later - smaller file.jpg
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