In remission but still got diarrhea?

[Hayleyberry]

Hi everyone hope your all well!

I've been on Azathioprine for a month now an my last blood test has come back all normal so my nurse has said I'm now in remission but I've still got diarrhoea and going a few of times a day.
My nurse said its probs due to anxiety which I don't really suffer from, I'm on a low fiber diet so I don't think it's my diet.
Part of my small bowel is thickened an I've seen a surgeon an he doesn't think that's what's causing the diarrhoea.
I'm really confused! :frown: Am I really in remission?

 

[shamrock15]

You haven't mentioned if you have had bowel removed or not. The amount that has been removed can have an impact, as can its location. Additionally, if you are low on your B12, it also reduces the function of your bowel. Remission unfortunately doesn't mean necessarily an end to diarrhea (really wish it did).

 

[Rachel80]

Hi there, i still suffer with it & have done for 16 years. It has never gone away & i'm used to it now. I'm on pentasa & allegedly in remission however i had 6 inches of my illeum removed & i put it down to the fact that a) i have a narrowing & b) my intestines are shorter than most peoples! Out of interest, what is Azathioprine & how does it differ to Pentasa? I get dizzy quite a bit & I think thats down to the pentasa....

 

[shamrock15]

Azathioprine is in the immunosuppressant category of meds, pentasa is an anti-inflammatory related to aspirin. They also differ in where they release their meds (I believe Pentasa works primarily in the colon), how long they take to become effective (aza can take more than a month to actually have a noticeable effect).

 

[Rachel80]

Ok thank you - my problem area i guess is where the intestine joins the colon so that makes sense. I often wonder if there is anything else out there worth trying!

 

[Hayleyberry]

Hiya, sorry no I haven't had any part of my bowel removed but there was talk about removing some a while ago. I've gotten used to the diarrhoea now I just thought remission = no more diarrhoea. The b12 was tested a while ago which came back normal so I'll to get that checked again.

Thank you!

 

[CyCrohn'sGuy]

Technically, I have been in remission since August 2010 following surgery, however since then I have had diarroea every single day (short bowel syndrome???), I also have a fissure that will not heal and still get bouts of fatigue, hives, lack of appetite and weight loss. I guess remission in my case means that I am free of pain!!!

 

[KWalker]

I also am in remission but have diarrahea every single day. It's the only symptom I still have .

 

[DustyKat]

For those of you with small bowel/ileal involvement, particularly the terminal ileum (where the small bowel meets the large bowel), you may have chronic diarrhoea due to the inability to absorb bile salts. If you have had surgery then it is quite likely the cause but even chronic inflammation and/or scarring can have the same effect as your ability to absorb is still affected.

There is a prescription medication called Questran that many people find successful or you can use psyllium, it is a natural product that can be bought in the health food section of the supermarket. My daughter had chronic diarrhoea following a resection, Questran worked for her but she found it too unpalatable and eventually happened upon psyllium.

If anyone does go down this path be sure not to take any medications or supplements for one hour before or two hours after using psyllium as it can affect their absorption. The exclusion times for Questran are a little longer.

Dusty. xxx

 

[Shan728]

From what I understand remission does not mean the end of diarrhea unfortunately. I have CD and it is most severe in my terminal ileum. I think tha we have trouble asorbing sine this is the location that alot of that goes on. Hang in ther and take the good with the bad and the bad with the good.

 

[rob72]

Hi everyone hope your all well!

I've been on Azathioprine for a month now an my last blood test has come back all normal so my nurse has said I'm now in remission but I've still got diarrhoea and going a few of times a day.
My nurse said its probs due to anxiety which I don't really suffer from, I'm on a low fiber diet so I don't think it's my diet.
Part of my small bowel is thickened an I've seen a surgeon an he doesn't think that's what's causing the diarrhoea.
I'm really confused! :frown: Am I really in remission?

When started Azathioprine my doc told me it takes a few months to kick in.
I had a course of steroids, started at the same time to help me along.

Aza was great for me, 4 yrs of good remission.

p.s. dont ever forget to get your blood tested.

 

[Nosick]

For those of you with small bowel/ileal involvement, particularly the terminal ileum (where the small bowel meets the large bowel), you may have chronic diarrhoea due to the inability to absorb bile salts. If you have had surgery then it is quite likely the cause but even chronic inflammation and/or scarring can have the same effect as your ability to absorb is still affected.

There is a prescription medication called Questran that many people find successful or you can use psyllium, it is a natural product that can be bought in the health food section of the supermarket. My daughter had chronic diarrhoea following a resection, Questran worked for her but she found it too unpalatable and eventually happened upon psyllium.

If anyone does go down this path be sure not to take any medications or supplements for one hour before or two hours after using psyllium as it can affect their absorption. The exclusion times for Questran are a little longer.

Dusty. xxx

I second the psylium recommendation. It made me gassey at first but after a few weeks it works very well. I take 2 spoonfulls every morning.

 

[CyCrohn'sGuy]

If anyone does go down this path be sure not to take any medications or supplements for one hour before or two hours after using psyllium as it can affect their absorption. The exclusion times for Questran are a little longer.

Dusty. xxx

After a bit of a shaky and scary start with psyllium (I was taking it in the morning with my blood thinners making them totally inactive consequently my INR dropped dangerously low) I now take psyllium in the evenings. Initially there was not much of a change but now after about 2 weeks of taking them my BM's have reduced from 8-12 times per day to........ just 2 today. :ywow: And while all my BM's have been D since my surgery now there is actual formation

I'm hoping this is not just premature enthusiasm and that long term there will be further improvements...... But I cannot stress enough what DustyKat advised in her post above.

Costas

 

[Jane]

really useful thread

This was a really useful thread. Thank you for sharing. A reminder for me to try psyllium again.

 

[nogutsnoglory]

Ever since surgery diarrhea doesn't stop. I try eating Bananas, rice, applesauce but nothing works.

 

[CyCrohn'sGuy]

Ever since surgery diarrhea doesn't stop. I try eating Bananas, rice, applesauce but nothing works.

I can totally relate nogutsnoglory......it's so disheartening once you have tried almost everything but still the dreaded D squirts out of our behinds.... have you tried psyllium?

 

[Hayleyberry]

Thanks everyone for replying I'll give the psyllium ago xx

 

[nogutsnoglory]

I can totally relate nogutsnoglory......it's so disheartening once you have tried almost everything but still the dreaded D squirts out of our behinds.... have you tried psyllium?

Afraid because I'm in a mild flare. What I hate the most is getting dizzy after D and also people hearing it! My work bathroom is right outside the conference room it's so humiliating.