Constipation With Crohn's/IBS

[Ness]

Here's a short profile to start:

Male/26/Crohn's/IBS
Diagnosed February 1st 2011
Current Meds: 6MP, Prilosec, Lorazapam (as needed), Lots of Vitamins!

Since my diagnosis, I have had trouble with my bowels. Moving them, to be more particular. MRI and pill cam tests have shown no active inflammation and no stricturing/narrowing. Though, after going on Prednisone and Azathioprine I couldn't move my bowels very well. Don't get me wrong, I can go, but it's never completely emptying. This past December, I had a 2nd flare up - We also switched from Azathioprine to 6MP.

There was a short time where I was getting treated strictly with steroids and not an immunosuppressant. THAT was when my bowel movements were fairly normal. The last time in the past year. Which makes me wonder if the 6mp and Azathioprine have affected my BMs.

Right now, I'm dependent on Miralax, double to triple dose, every other day to keep going and clean my system out. If I don't do this I experience pain and extreme discomfort. The doctor thinks it's IBS but I don't completely buy it. I used to go ALL THE TIME before my treatment and diagnosis. As in, 2 times a day. It was nice. I miss those days!

Curious if ANYONE can relate to this? My crohn's is located in my small intestine. As mentioned, no evidence of narrowing or inflammation but still having lack of regular bowel movement issues. Could 6MP possibly be causing some irregularity?

Anything or anyone's words would be very helpful. I wake up and feel very depressed or angry about my situation. I should be grateful for what I haven't had to deal with. I have tried exercise and fiber. Drinking tons of water helps ... But man, my BMs are so cramped! I hate going!

I'll mention I suffer lots of joint pains, EVERYDAY, due to osteopenia from steroids ... I just want some hope that I can get back to my Crohn's not controlling my thoughts and life. Spiraling down and down.

Thanks for reading. I go to therapy Thursday ... That should help a bit.

 

[Trysha]

Hello Ness,
You are not alone in this.I also have both Crohn's and IBS., and I share your concerns.
My crohn's is in the left colon and I have changed from frequent BMs to the exact opposite.
Currently my only medication is cortifoam enemas, ;tried azathioprine but had a reaction to it and now I have a big decision to make since the GI wants me to move to either remicade or humira, which makes me unhappy.
He suggested pegol to relieve the constipation which I did not find very effective
at the prescribed dose.
I have increased the soluble fibre, ie oatbran for breakfast and fruit and vegetables when tolerated. A teaspoon of inulin in a large glass of water adds some insoluble fibre also.
This may not agree with you since your crohn's is in a different area.
Worth a try though.
I also increased fluid intake and try for 8 cups or glasses a day and include water, juices, tea in that total.Sometimes a protein shake if I am not up to the solids.
Have you tried music for its healing and calming effects.
Sometimes it is easy to get obsessed with these things and I try not to--- by listening to good music (ie great composers Mozart, Beethoven etc) going for long walks and going to the gym three times a week, and find all these things are helpful to me.
I also practise relaxation and meditation.
Every little helps.
Sorry you are not feeling so well.
Feel better soon
Hugs and best wishes
Trysha
.

 

[mainekitty]

Hi Ness,

I also have Crohn's and IBS, and I know how tough this is. I think for me, the most difficult thing is not knowing which is acting up! Constipation is particularly tough, because I can't do much to treat it. Increasing fiber doesn't help me either, and often what that does is make me fluctuate between C and D, and makes things more painful with cramps/gas.

It may not be a listed side effect, but it does sound like maybe your medication is causing this constipation. Do you have any other drug options? It might be worth just saying to your doctor you think it's having this effect, and is it possible to switch?

I agree with the previous poster - relaxation can help somewhat. A bath at night, relaxation CDs, a little light exercise (I say light, because too much often also makes me fluctuate to D). These have occasionally helped.

I hope you are feeling better soon.

-Sarah

 

[Skycruiser]

Deleted.

 

[Ness]

Everyone, thanks for replying!

I'm pretty sure I know what a flare feels like. I've had 2 and I needed to go to the ER when I was having them ... I honestly don't believe I am flaring but something isn't quite right. The only thing I can point to is the meds. I have a hard time believing it is my IBS - as mentioned. I was insanely regular before I started pouring meds into my body.

b. prester - I feel ya. Fiber doesn't make a difference in the puzzle. But we've got to keep hope alive. I am true believer in that Crohn's commonly is being ignited in people's tummy's with a more sensitive GI due to all the preservatives and chemicals in our foods. Even our fruits and veggies have pesticides in them if you're buying from a non-organic grocer. Another examples is that Hershey's includes a preservative in their chocolates that is like a plastic that stays in our bodies. I've been reading up on a lot of nutrition books/guides and information that is credible.

This disease wasn't as common 25 years ago. There is a reason its so prominent in Western culture ... It only makes sense to me that its what we put in our GI tracts that affect our GI tracts. Doctors aren't nutritionists, they are trained in pharmacy treatment.

I'm currently reading up on Karen Hurd. A nutritionist from WI whom a close friend of mine is seeing and has found success through her methods. Also, I'd recommend checking out the documentary Forks Over Knives. It features a doctor who treats his heart disease patients with natural therapy. Something to really consider for people in our shoes who can't find satisfactory relief.

My apologies for any typos, responding in a mobile phone!

 

[Aura]

Hi Ness

I have active crohns in my small bowel at the moment near jenjumn (can never spell that word) and then 2/3rd down small bowel. In total 9 ulcers some fissuring - but not fistulas or narrowing. I am and have been for many years a constipated crohnnie. I poop pellets and now I use Lactulose to soften my stools and I take a shot glass of it in my coffee. At my worst time of this flare I was doing two shots of it a day so I could poo. Even then some times I would need to use microlax to release my bowels. Getting blocked up causes pain, bloating, cramping pain that goes from bowel to my left shoulder.

I do not have IBS, just crohns and other conditions. No matter my medication Methotrexate, Humira, Azathioprine - I have remained a constipated crohnnie before and while on these meds. This is why I dont like the Crohns Activity Index that GI use as it is biased against consitpated crohnnies. But I always let them know it.

 

[ilovedevon]

Hi I don't know if this post is still active but...

I am a Crohnie with constipation. My diet is heavier in insoluble fiber. My main grain is whole wheat; I completely stay away from rice (because it's binding) and oats (because they are gas producing. I do not eat gas producing fruits or vegetables. I also stay away from apples, bananas and tea. No carbonated beverages or drinking through straws (for the most part). I have to say that this has helped as far as keeping me more regular than I was. This is all under the advice of my dietician. Hope this helps.

I also have been thinking about having IBS as well.. Too many IBS-like symptoms. I'll find out soon.

 

[Naturelover]

Hi Ness

I have active crohns in my small bowel at the moment near jenjumn (can never spell that word) and then 2/3rd down small bowel. In total 9 ulcers some fissuring - but not fistulas or narrowing. I am and have been for many years a constipated crohnnie. I poop pellets and now I use Lactulose to soften my stools and I take a shot glass of it in my coffee. At my worst time of this flare I was doing two shots of it a day so I could poo. Even then some times I would need to use microlax to release my bowels. Getting blocked up causes pain, bloating, cramping pain that goes from bowel to my left shoulder.

I do not have IBS, just crohns and other conditions. No matter my medication Methotrexate, Humira, Azathioprine - I have remained a constipated crohnnie before and while on these meds. This is why I dont like the Crohns Activity Index that GI use as it is biased against consitpated crohnnies. But I always let them know it.

I can't use Lactulose. It causes so much bloating, nausea and gas but does not produce a bm. I take 3 Senokot twice a day in addition to a glass of Miralax twice a day and still can't have a bm. It takes adding enemas and Biscodyl to get things going. Doc hasn't done a pill cam or MRE as he thinks I have slow transit constipation, pelvic floor dysfunction and IBS. I'm not sure I agree with him. I have so much gas, pain and constipation that I look like I'm pregnant. I feel awful, frustrated as well as angry. :ymad: Just all mixed up about the situation.

Could it be you have a GI transit problem and that is why you are a chronie with constipation?

Thanks letting me vent.

 

[Aura]

Hi, at the moment I've added in lax sachets as well. I do have a slow transit colon. But I haven't had it retested since about 2000.

The distension has been ok now for a while but I need to take all this stuff to be regularish with BMs.

I so am over being a constipated crohnnie. The want me to try biofeedback therapy. But both my mum and her mum had functional constipation as well so it just may be in my DNA.