Symptoms with remission

[Stardust_Fiddle]

Hi, all! I had an endoscopy/colonoscopy with biopsies last Friday, and I am clinically in remission with no signs of active Crohn's. That's great, obviously, but I am still experiencing all the symptoms I had when my Crohn's was active--pain, cramping, constant left-sided pain, water diarrhea, fatigue, general malaise. My bloodwork has all been good too. Any advice for dealing with what I guess is my "new normal"? :eek2:

 

[Chica]

Hi there, sorry to hear you are still suffering. I'm on infliximab (remicade) & it's an 8 week cycle. In weeks 6 to 8 of the cycle as the trough levels of the drug get low, I can experience extreme fatigue, some nausea and diarrhea & occassionally I can when the meds are higher. You probably know we all seem to react differently to this condition, but my consultant told me that even tough I'm in remission the condition is still there in the background & that there are microscopic inflammations around the body that cannot as yet be detected by modern medical testing. Have you tried experimenting with a different diet? Take care : )

 

[Stardust_Fiddle]

Thanks for the reply, Chica! I'm on Humira biweekly, and I definitely notice an increase in symptoms during the week that I don't inject. Because of my clear scopes and biopsies, however, my doctor won't increase my dosage, which I completely understand. I just had this glorious vision of what remission was going to be, and I'm disappointed that it's not really different from being sick. That's good to know that there can still be undetectable disease presence; I couldn't wrap my mind around how I could still be sick and have everything look great on paper!

Regarding diet, I follow a restricted low-fodmap diet, which has helped somewhat. Honestly, though, my body just seems to hate all food and liquids. :lol:

 

[mish2575]

I read in here yesterday that people have crohns from the outside in. . . meaning it is eating away at the outside of your guts rather than the inside.

Don't know if that is a possibility.

 

[Stardust_Fiddle]

Yikes! I hope not! :eek2:

 

[Chica]

Yikes I hope not too!

 

[Lady Organic]

yes its possible to have active (debuting) crohns and no signs at endoscopy. It happened to me once. I was up and down on cortisone and sulfa and had regular rectoscopy every month or so. Once my GI was happy and saw I was in endoscopic remission after a round of prednisone. However, that day I was feeling it coming back again with D. I knew something was wrong and definately not normal, but my GI tried to reassure me. 2 weeks after, blood started again along with the D...
The fact that your symptoms increase towards then end of your treatment cycle is somewhat of an indication of possible disease activity. Did you mention that to your GI? I think its possible to be completly symptoms free while on Biologics and its logics for me to pursue that goal of being symptoms free. It doesnt have to be just a dream, it can be reality, you can fight for it and explain that again to your GI

 

[Stardust_Fiddle]

Thank you, Lady Organic! I did make my GI aware that I am still having symptoms, but he doesn't feel that they are caused by the Crohn's since my scopes and biopsies were both clear. He attributes my symptoms to my motility issues, which may be a contributing factor, but I do believe that the Crohn's is still causing me to have issues. Maybe it sounds crazy, but I can distinguish between the motility pain and symptoms and those caused by Crohn's; the doctors just don't believe it! Haha! I will definitely be bringing all of this up to my motility specialist when I see him in a few weeks. My doctors are great, but they tend to bounce the ball back and forth, each blaming symptoms on the other issue. :tongue: Thanks again for your response!

 

[Lady Organic]

np, also may I add, I have read it several times in testomonies either with Crohn's or arthritis that people feel their symptoms coming back towards the end of the treatment/days prior injection when on Biologics.

biologics seems to have a short term activity period as opposed to traditional immuno-supressant which can stay a long time in the body after discontinuation of treatment (well my experience with them). they seem to work really differently.

if you keep a journal of your daily symptoms for a while, maybe that could help your GI see the pattern and understand better the your specific situation.

what is motility issue btw? IBS?

 

[Stardust_Fiddle]

Thanks! I do keep a food and symptom journal, so hopefully that will prove beneficial. I have IBS and gastroparesis (delayed gastric emptying) in addition to Crohn's, so my motility is compromised with regard to my stomach and likely my intestines as well.

 

[Chica]

Have you tried Infliximab (Remicade)? It may work more effectively for you. For me the 8 weeks cycle is a bit long so may be reduced soon, but for the first 6 weeks it's a miracle med for me. I went from having had 4 ops on my rectum (now one step away from a bag) & being in a wheelchair with the arthritis to being a changed woman immediately after my first infusion. It's an amazing biologic for me. However, I like the idea of being able to self inject Humira from home because having to sit in hospital for an infusion every 8 weeks is a bit less convenient. Hope you find a solution. Take care : )

 

[Lady Organic]

wow Chica, that what i call a life savior!!! Great story, amazing! what were you taking before the remicade?

 

[Stardust_Fiddle]

The only biologic I've tried is Humira. I do enjoy the convenience of injecting at home, which is why I chose it over Remicade when given the choice by my GI. My GI isn't willing to change my Humira dosage or consider switching to another med right now because everything was clear on my tests. I understand; it's good to have the possibility of increasing my dosage to weekly and using Remicade if necessary in the future.

 

[Chica]

Lady organic, I had taken no meds before Remicade as the Crohns was diagnosed so late. I was at a small hospital at first in 2006 where they didn't think to investigate as to why I had got a big perianal sepsis and fistulas. Then I had a massive radical op in 2012 because of more sepsis, then collapsed 12 weeks after the op with a textbook Crohns flare & went to a bigger, better hospital who were quick to get me diagnosed and on to Remicade & I've been fairly back on track since. I can't train like I used to though (I'm a professional dancer) as my body just won't allow it but I can work part time on that front and at nearly 41 I'm not complaining : )