Will the "D" ever stop?

[becca38]

I have been on Humira for 2 plus years. I feel better and i have had reduced bowel movements, however the diarrhea has never stopped.
Now I have gone from 3-4 movements a day back up to 10-15. I am less comfortable leaving the house and I do not have great health care to turn to. I have been on just about every med at some time in the past 22 years and nothing has been very successful.
I do not know what to do anymore. I am so tired and it is everything that I have to care for my family. At the end of the day there is nothing left.
Pain is in my joints more that my digestive system. i have cronic pain issues but no meds as doc just seem to look off into the abyss when I mention pain.
I feel like I just have to suck it up and live as normally as possible.
I keep taking my Humira injections but it seems like a waste of the "liquid gold". on the other hand I am concerned that if it is helping I am in for a disaster if I stop.
How is it possible to have diarrhea for two decades and still be standing?

 

[Cat-a-Tonic]

Sorry to hear you're struggling and that your doctor doesn't seem to be listening to you. Is your doctor good otherwise? If not, you might want to start looking around for a new doc. I know that certain pain meds have an added side effect of constipating, so if you were to get on pain meds they would probably slow down the d. I'm not on pain meds myself but I take Lomotil (it's like prescription-strength Imodium) which stops my d for about a full day. If your doctor isn't willing to prescribe pain meds, you might want to ask about Lomotil at the very least.

As for the Humira not working as well as it is supposed to, have you tried the other biologics? Everyone is different and sometimes certain biologics work better for people than others. I have a friend who was on Cimzia but it didn't do anything for her, and now she is on Remicade and that's working pretty well. If you haven't been on Cimzia or Remicade yet, you might want to look into those (there's lots of info about those in the "treatment" section of the forum). Good luck, I hope that helps somewhat, and I hope you are able to get some relief from your pain and d.

 

[hainman]

hi becca,
i feel your pain as its horrible not being able to leave the house and having to worry about where the nearest loo is,even then you might not make it anyway,i have been on humira now for a few months and the D has stopped quite abit to the extent im more than often having normal bm.i also take 6mp along with weakly humira and the dreaded preds which im tapering down off.this will be the test to see if i get of them without the D starting up again,when it kicks in im 20-30 times a day and dont want to eat as i feel that eating will just keep the D coming but then you have no energy to do anything,i look after my 3 yr old so its unfair that she is stuck in-doors.i hope you get everything sorted and get back to a normal-ish life,always someone here to listen if you feel the need.
craig

 

[CDDad]

Hey - I'm like you - I had D for 20 years and like you somehow I survived it. But, now I have an ostomy and I'll tell you, not having urgency and D anymore is wonderful.

Anyway, when I was having 15 to 20 visits to the bathroom a day pre surgery, the only med that helped me was low dose codeine. It gave me my life back - to a degree compared to my freedom now.

 

[Jennifer]

6MP was the only thing that seemed to help with my diarrhea. Have you had bowel resections in the past? If so how much was removed? My GI told me that some people can be prone to diarrhea if they've lost a good portion of their intestine. Its similar to Short Bowel Syndrome. There are medications they can prescribe to help stop or lesson diarrhea like Lomitil. That's what my GI gave me. It does seem to help on days when it comes back or if I eat one of my trigger foods (raw veggies or greasy foods).

As for the joint pain, that can be from both IBD and dehydration. Since you're going to the bathroom so often and its never solid, I'd suggest increasing your fluid intake to help replace some of those lost fluids.

 

[becca38]

Thank You all: Cat-a-tonic, Hainman, CDDad and CrabbyRelish!
I appreciate the input and support. As far a s a Doc, i moved 18 months ago and I have been in active persuit of a good match for me but I have had NO luck. I do have a GI but I have little confidence in his technique as his ego seems to get in the way. For instance he told the Pharmacy to reduce my Humira to bi weekly without consulting me and then denied doing so, within a month i had to resume 1/per week & no difference now. He does not seem to interested in my past when I ordered records so I am not impressed but tired of starting over. I have been to 4 other docs but they do not know what to do with me and i always feel like they stop listening as I start history.
Hainman & Crayy Relish - 6mp is one drug that i have not taken, i will look into it.
Also, I believe that mild codine and/or Lomitil could help, I wonder why none of the 5 docs that I have seen in the search for a match has suggested either.
CDDad, I am starting to consider surgery, wish I had a doctor that I believe in to discuss such matters. I have been told that the disease involves a considerable amount of my colon so surgical procedure options are limited. It is great to see your positive response to life beyond surgery.
Thank you everyone for helping me get through today. I am going to go enjoy some sun and get to know my neighbors bathrooms!!! Just kidding, good thing there is sun in my yard

 

[hainman]

@ crabbyrelish yeh i had a double resection about a year after my dx in 2007 i think,it was planned to have keyhole surgery but when they went in they found more infection than first thought and at both sides so they had to fillet me like a big fish lol and then rejoin 2parts i think.part of my colon and appendix was removed too,i had a pain issue one time and my doc prescribedme co-codomol which is kinda paracetamol with codeine and it says not to give or take if you have ibd,i thought WTF they give they this for but took it coz pain was driving me nuts but it gave me constpation which i suppose for once wasnt a bad thing considering i had been pissin out my arse for months but so far the 6mp and humira is keeping down the big D.@becca glad you have sun as its feckin baltic in scotland lol thats a good idea stink the neighbours loo's out and keeps yours fresh