What next?

I have had uncontrolled colitis for 15 years now, and i have recently been taking Asacol foam enemas to try and gain some control, they were ok for the first 2 days, but now i can't seem to hold them in at all. I have previously tried Steroids but they didn't agree with me, and then i tried pentasa but they made me vomit.

I am now feeling at the end of my tether, I am going to try the Specific carbohydrate diet, but am a little worried about losing anymore weight as i only now weigh in at just under 7 stone. Anybody who has been on this diet i would love to hear your experiences. (My diet is currently rich in bread potatoes, meat, and refined sugars, i can not currently eat ANY fruit or veg or dairy)

What more can i do, i am really not tolerating the meds i have been given over the years, apart from trying to change my diet, i am seriously thinking of having my bowel removed but my husband is dead against it.

I am currently experiencing diarrhea, left sided pain, weakness/tiredness and just throughly depressed.

Any advice?

i was going to ask also why your husband is so against surgery?

It really does make life so much better.

I can understand how your husband might need to get used to the idea for a little while--but hopefully he will come around and say, "I love you no matter even if you have a bag!"
Also, you might be jumping to surgery a bit quickly, since you aren't really on any meds right now. (just the Asacol enemas which aren't being retained).

I think that you should *really* try the meds again. Are you sure it's not your anxiety over taking them that causes the vomiting and your inability to retain the enemas? I'm not trying to be mean or snotty, but anxiety can do that to a person. Perhaps it would be a good idea to see a therapist who specializes in counseling people with chronic diseases. There are a lot of meds that you can try before resorting to surgery.

I saw my gastro doc yesterday and he wants to do a sigmoidoscopy straight away so he can see what is going on. He said that surgery could be an option but it's a huge decision and maybe I should try other meds first. He is talking about infliximab and 6mp. He said I could try asacol or mezavent tablets but I can't swallow the darn things.

Asked him about the scd but he said it would make no difference. He had never actually heard of the diet And of course all he is focused on is medication to treat this. Does anyone here think diets work with colitis? My diet is poor as I currently can't eat fruit and veg.

I have been getting so down after seeing my gastro doctor, he is always so negative and always leaves me feeling like i am going to drop down dead at any moment. My previous gastro doctor was extremely good, and she always managed to remain positive when i didn't always listen to her advice.

At the end of the day i have had colitis for a long time, and i have to deal with it, as it seems to be taking over my life. I do not want to have remicade or 6mp and i also don't want surgery just yet. I kind of got up this morning thinking i am not going to let this disease get the better of me!

So my plan is now to restart the Asacol foam enemas and to play with my diet, maybe the scd, or an anti inflammatory diet, low residue or gluten free and just see what works for me. I have also just been recently diagnosed with osteoporosis so i need to be thinking about turning that around and making sure i take my calcium everyday, and making sure i do my exercises to strengthen my bones.

It is so easy to become depressed and try and ignore the fact that you are ill, but at the end of the day it is always there one way or another. I just always have this underlying worry that i have bowel cancer, and it scares me, thats why i was thinking about just having surgery so i would not have this problem anymore.

I am moving to Canada (Vancouver) in September from Devon in the UK so obviously have to think about medical insurance and what medication i can afford to have, so if i can control this with alternate medicines then all the better. I just want my gastro doctor to listen to me and maybe encourage a change of diet, rather than just dishing out stronger and stonger medication when he knows that i am against that kind of treatment.

I am looking in to different probiotics, maybe that could help.

Hi mercury...how long have you been using the foam enemas nightly/daily?

You should also be on an oral 5ASA med such as asacol at the very least.

Once you come to Canada...there are NO asacol foam enemas...sadly...but there are retention enemas called Salofalk or Pentasa.

I suggest some of the problem you're having at this time is that you'll be moving to a new country with a new set of stressors soon to come.

Ask for an oral 5ASA med such as Asacol...at least 6 to start. If the doc puts you on a high dosage to start, you might have some side effects that will be difficult to distinguish if it's UC or med-related. You can always increase if you need.

As well, keep on the Asacol Foam twice daily.

Add a probiotic and fibre supplements.

hang tough....it takes a while.

If you are to change to the sCD...it will help in the way how you feel. I know some on the diet, and it definitely changes the discomfort levels, although hasn't changed the bleeding factors.

Try not to get too discouraged....I think part of the reason things have gone on for so long is because you haven't been on enough/the right meds.

It does, however, take commitment.

quincy

ickypoo said...
You may want to consider "Listen to Your Gut" by Jini Patel Thompson. Information can be found at www.listen2yourgut.com/. This is a resource that has helped me a great deal. She is also a Canadian from British Columbia. You will practically be neighbors.

Thanks for that link. The book looks good, and certainly something i want to read more about. It sounds like it is not as restrictive as the SCD, which would be good in the long term.