Still the BIG D

[n00b]

I have been on HUmira now for coming up to 4 months and without tempting fate I having much less pain and bloating and the urgency has decreased considerably as well however.....

When I do go it is always the big D.

Coudple of questions I have are:

I had a resection a couple of years ago where they removed my TI. Could the diarrhea be a result of that?

I did try Questran along time ago but cant really remember it working too great?

Is there anything else I could try?

 

[n00b]

Hi
Me again, I thought I would bump this as I am still suffering badly with loose BM,s. So much so that my anus is bleeding and so very sore ( sorry to be grose)
My GI tells me my bloods are still looking fine however I am still suffering with the Big Bad D

Any help or words of wisdom would be appreciated

 

[KayleighMeek]

I still have D even though I have been on cimzia for over 9 months and I also have blood when going. I have mentioned this to my GI and they said that if it continued they would do a scope to check out what's going on. If it is really making you suffer I would mention it to them again I think they need to do something to help you or look into it further even if your bloods are fine.

 

[theOcean]

Are you on an immunosuppressant in addition to Humira? If not, it might be a good idea to ask your GI about it.

 

[n00b]

Thanks guys

I did try azathoriprine however I was unable to tolerate it, hence why they started me on the Humira.

The only options I have left if the Humira does not work is Remicade.

 

[n00b]

Thanks guys

I did try azathoriprine however I was unable to tolerate it, hence why they started me on the Humira.

The only options I have left if the Humira does not work is Remicade.

 

[Ali29]

I have found that using desitin/triple paste, etc. white diaper rash creams for babies - the really thick ones help with the hurting/bleeding from the D helps so much in healing down there - there are days I use it several times.

Hope you feel better!!!

 

[theOcean]

There are other biologics than Remicade and Humira, so don't feel like you're out of options! There's Cimzia, vedolizumab, Simponi... also, if you weren't able to handle Imuran, there's Methotrexate and 6mp.

Also: what's your diet like, in case that's influencing your bowel movements?

 

[wellhello]

Lotronex is supposed to be great for diarrheah, too, but some of the side effects are overwhelming (stomach upset and headaches.) I like diarsoothe, is so easy on the stomach, and stopped gas and diarrhea, I finally found the source from my bookshelf- From an M.D, Doctor John LaPuma,"Big Book of Culinary Medicines." works for me. He also suggested using Ginger for calming the stomach, but I found it actually made me more nauseous, and bothered my ulcer a little.

 

[DustyKat]

There is every likelihood that the diarrhoea is a result of the resection.

The problem with having the terminal ileum removed is that the reabsorption of bile salts is affected. Instead of being absorbed back into the body they stay in the bowel and move unhindered into the large bowel. The presence of bile salts in the large bowel then affects the osmotic effect. In the large bowel water is normally drawn back into the body and so creating formed stools. However when there are bile salts present it has the opposite effect and actually draws water out of the body and into the bowel, causing loose watery stools.

Some people seem to be unaffected by removal of the terminal ileum from the outset, for some it takes a few weeks to go back to normal and still for others it is either a settling down but not back to normal or they never get back to normal.

Both of my children have issues with bile salt malabsorption diarrhoea. My daughter tried Questran and whilst it did work she found it very unpalatable and it did cause her some cramping and bloating. She happened upon psyllium husks and that was the life saver for her and I am not exaggerating in saying psyllium gave her her life back. After my son’s surgery he moved straight to psyliium and they both are able to get out and lead relatively normal lives because of it. That is not to say there isn’t some degree of targeted eating and times of eating but overall it is pretty damned good. My son uses the loose psyllium and since my daughter moved home I notice she is now using the capsules.

Have a read of this thread and see what you think…

http://www.crohnsforum.com/showthread.php?t=13856

These are the loose husks and capsules…

Dusty.

 

[n00b]

Thanks guys, this is very helpful.

I was thinking of trying Psyllium husk but was unsure if it woudl help or makes things worse.

Thanks again I will try it and report back to see if there is any improvement.

I am sure it has something to do with the resection, as I said my bloods are perfect, i am putting on weight and feel so much better.

Its just horrible going to the loo

 

[SupportiveMom]

Our doctor added questran to thicken up the stool before my daughter went on EEN. It did start to work, but honestly we weren't consistent with drinking it. The taste isn't too bad. It might work for you.