Help! Any advice appreciated.

[butafli]

Hi All,
It has been 8 months now since I had a resection. I had 15cm of large, 15cm of small bowel, the IC valve removed and strictureplasty on another 30 cm of small bowel. For the 1st 5 or so months afer surgery I felt great but for the past month or two I have had chronic D and I am starting to get the mid tummy nausea feeling before going to the toilet. It is so painful until I do go. I have no pain though in my side. I am so confused.
I am currently on 25mg Azathioprine (5 weeks), Pentasa 2500 (1 week). I have had a sinus and chest infection for around 6 weeks now so my doc doesn't want me to increase the azathioprine to 50mg until I'm clear of infection.
How can I get my D under control? Does the nausea mean I have a narrowing again? God I'm so so scared I'm going to have to go through all of this again?
Has anyone else experienced this after a resection. Is constant D normal to start up again 5 months after surgery??
My bloods show everything looking pretty normal.
Sooooooo bloody over this and confused. Please shed some light.

 

[Crohn's 35]

If you have lots of D, I would get your doctor to prescribe Questran (cholestyramine) and it doesnt work for everyone but I had 2 resections and only used it for about a year. Helps me. Good luck.

 

[Jennifer]

I've had one resection but it was only in one place. Its very possible that they didn't remove/work on everything that needed to be while they were in there and I do believe that can be common after resections. Not all resections last for years and years either. There are many prescriptions out there for diarrhea (I take Lomotil as needed) but I wouldn't sit on the nausea. Contact your GI if you haven't already and make sure they know what's going on (how bad it is, how long its been happening, has it gotten any better or worse etc.)

 

[Sybil Vane]

I hate to say this, but yes, it's very possible to flare a few months after a resection. I've had three and flared within 6 months each time. I am not going to have any more surgeries unless they are absolute medical emergencies. The first two were to remove strictures in my small bowel and only a few inches were removed at a time. The last one was like your surgery where they removed two feet of my ileum and a foot of my colon. I haven't been the same since.

I agree about the Questran powder, although I prefer the Welchol tablets because the Questran tastes awful to me. I take 3 tablets twice daily, and if I don't, I have uncontrollable, constant diarrhea in addition to the CD problems. You'll know right away if it's helping. It usually kicks in within a day or two. (Bile acid diarrhea or bile salt diarrhea really burns and is yellow and can be foamy. I know that's a super gag thing for me to write, but I wanted to give you my symptoms in case it helps.)

 

[butafli]

Thanks for that. It's really good to know. And yes! the yellowy bile hot acidy D is not comfortable to say the least. If it continues I will definitely be seeking some of that stuff. I am slowly increasing my 6MP so I'm hoping that once I'm on a higher level things will calm down. Fingers crossed!!!!

 

[Sybil Vane]

I don't want to overstep, but I wouldn't wait because 6MP is not going to help with bile acid absorption. You will get your CD under control, but you'll be dealing with that awful, burning diarrhea without those meds. If I even miss one dose, I'm spending the next day on the toilet. I'm not trying to be depressing, but I wish I had asked my GI for Questran or Welchol sooner. I thought it would go away, too, and I ended up not being able to leave the house for even a 10 minute drive. Questran and Welchol are miracle drugs--and they lower your cholesterol, too!

 

[butafli]

A reaction so quickly???

I don't want to overstep, but I wouldn't wait because 6MP is not going to help with bile acid absorption. You will get your CD under control, but you'll be dealing with that awful, burning diarrhea without those meds. If I even miss one dose, I'm spending the next day on the toilet. I'm not trying to be depressing, but I wish I had asked my GI for Questran or Welchol sooner. I thought it would go away, too, and I ended up not being able to leave the house for even a 10 minute drive. Questran and Welchol are miracle drugs--and they lower your cholesterol, too!

Hi ,
So I started on Questran around 12 days ago and after 4 days I was having more normal BMs. I was only taking 4g of the Questran Lite at night but last night I decided to be smart. I thought I could halve the dose so I wasn't taking so much. Anyway this morning and all day I have felt VERY queasy and then tonight I am struggling big time to get off the loo from chronic hot D again!!!! Can this happen so soon, like the following day? I am having all my very depressing feelings again from just spending the night on the loo as it's making me VERY worried that I'm in for a long time of it. So I guess I just want to know if this is normal, having such a big reaction from halving such a small dose?
I am also taking 6mp, Pentasa, and just started salazopryn on Sunday. I can't get hold of my GI until next Wednesday so was hoping to get some answers on here.

 

[Sybil Vane]

Hi Butafli,

I'm sorry you're going through this! I responded to your other post, but when I mess with my Questran or Welchol dose (or forget to take a dose), it's immediate D. It hurts and it's awful. My GI says that I shouldn't feel pain if I mess with my dose, just diarrhea, but I do feel pain because I'm so inflammed still from a Crohn's flare. I started flaring within a few months of my last surgery and I know that desperate, depressed feeling. I am so sorry you are feeling that way, but if you go back on the Questran at 4 mg, you might start feeling a lot better very quickly!!

 

[butafli]

Thank you Sybil Vane. It's awesome to know I'm not alone in this. I just wish I could find a solution to all of this. It's pretty tiresome. But I hate going on about it to my husband as I don't want him feeling low too. One in the house is enough!! He is a very upbeat poistive optimist who said last night to just up the dose again and it will all be fine. But I felt like it was building up over a few days. Who knows? I tend to over analyse everything and try to figure out the exact problem. I guess with Crohns that pretty hard to do. I just got freaked out that I could go backwards so friggen quickly after such a small med change!! Oh well. Onwards and upwards eh?