GI appointment on Monday - scared.

Hi everyone. Hope you are all as well as you can be.

I need to get this off my chest. I find it really difficult to speak to family members and friends about my colitis and the way I am feeling and also getting any constructive advice etc from them. This makes me angry because I have always been there and made time when they have had problems.

I have an appointment on Monday. My gi was really good because this was arranged yesterday. I am going to discuss all my options regarding treatment.

I think I have been living in denial a bit as far as steroids are concerned. The low down is that mesalazine tablets, enemas and suppositories, even though I do think help, do not get me into remission. I have been using enemas constantly for two years. Steriods when I first took them always got me into remission but as time went on my response was slower. I have now been on them for one year. At first they worked but then symptoms came back and now it seems that they don't work. I think maybe they stop me from getting worse. I am currently reducing my dose from 40 again having increased the dose for probably the fifth time in the last year.

I think I have been living in hope that every time I increase them that this is it and I will reach remission. Then when my symptoms come back the depression starts.

So I am meeting my gi to discuss azathioprine. I have a low white blood count and have had a melanoma. The side effects and risks of aza scared the living daylights out of me but this voice in my head is saying that maybe I need to take this risk because lets face it the steroids really are not working and I can't stay on then at high doses. I also think that my gi may be reluctant to give me it because of my other health issues and he may be worried to whether he is accountable if anything should go wrong.

Biologicals would cause even more problems for me because of my health problems. Then surgery has been mentioned lightly. I didn't think it would ever get to that considering my inflammation is only in the sigmoid and rectum. I know UC would be gone but do I want to have a bag for the rest of my life and what other complications would you get with one.

I am in the UK. Its different here compared to the states. I am not sure we get all the drugs that the states get. I cant just find another gi.

Yesterday I felt positive about the appointment but today after a bad morning on the toilet, I feel fed up, worried and scared. Do I take the risks? I feel I have no choice. Will I be allowed to have aza. I have been told I can have GCSF to stimulate my white blood count.

Thanks for listening. It feels better to be able to put this on here and know that someone who understands this awful disease can give some support.

I can remember when I was first diagnosed. It was only proctitis and I thought all I need to take is a tablet and all would be well. How wrong was I.

Thanks again.

I'd recommend a biologic (entyvio, remicade, humira, or simponi) over immunomodulators in your case. If you've already had a melanoma then the chance of reoccurance is much higher on azathioprine/imuran or 6mp and already having low wbc is another reason not to go on it.

Hi,

Thanks for all the replies.

So I had my appointment yesterday. The low down is although he has no problems in me having azathioprine he said he need to be sure that it will be of benefit to me. My symptoms are a typical as far as he is concerned and do not suggest that I have any significant inflammation. He suspects that there is a possibility that the constant use of enemas every night for the last two years together with suppositories that I have caused some sort of trauma, ulcer or just general irritation. I did have a really bad fissure about three months ago and do suspect piles as well as when I have tried to look with a mirror, I can see lots of purple veins in the anus. So the plan is:- stop rectals, continue to reduce steroids to 20mg and then have a sigmoidoscopy to assess inflammation when I get to 20mg.

So sigmoidoscopy booked for 19th December.

I sort of felt positive when I left but today feel anxious and afraid still. Didn't do enemas last night and that was scary. I have never dared do this because I thought maybe they were having a small effect. I have seen blood today but not with my four poos this morning but late this afternoon in one solitary small motion.
I have no urgency. Normally when I am bad I can't keep of the toilet and have bad urgency.

If there is inflammation when he scopes me it will depend on how bad as to whether aza is appropriate or not. He said some people live with a small amount of inflammation and a small amount of blood also being insignificant. Not sure that I agree with this but will have to wait to see the scope results. I will probably have to continue long term steroids at a low dose still.

Suppose I will have to do what he says until the scope at the moment. I am so scared of getting worse. However, it is only four weeks to the scope. My immediate reaction would be to restart rectals with avengence. The only good thing is I am still taking max dose of mezavant (Lialda).

Thanks for listening

I think your doctors plan sounds like a sound one, and at this point I think it's worth trying Aza, you will be monitored closely throughout through blood work anyway. Truth is we all react differently, and we just have to keep trying different Meds until we discover what works for us. With regard to rectal Meds, I'm a big believer in them, but I'm also a believer in that if you overuse something over a period of time it can have the reverse effect, so I would lay off them for a while for sure.

Well, sorry to hear that, and I agree why can't they just give you some Meds without a colonoscopy? sometimes that's all that you need! Is there any way you can push for this harder, I can get quite nasty about stuff like this, and sometimes sadly you have to, cos it's you that's suffering. Maybe reducing the Pred and stopping the rectals at the SAME time wasnt a good idea...I dont know, I'm guessing. Anyway you sound like you need to see someone asap and I think you have to be really strong and push for it.

Hello,

I hear you about the depression loud & clear (as most here can attest!). Basically, I haven't stopped crying since Aug when my health deteriorated. My inflammation is in the same area as you, in a difficult to treat place.

I'd suggest getting on an anti depressant & seeing a therapist. Also, your hubby may have broader shoulders than you think. Talk to him & share how you're feeling. You'll know if he can handle it or not.

I'd also suggest Entyvio or even better IVIG. It's hard not to think about side effects. I'm suddenly on an insane amount of Humira & a ton of other drugs. I'm sick now that I can't worry about the future. We don't know what will happen anyway so I just have to treat today. And today I was able to take my dog to the park & do chores & make dinner because of the crap load of drugs. I think today has been a blessing.

Sorry if I sound preachy. I think I understand though.

Thanks for the replies

iPoop - as soon as I have had my scope I plan to restart the enemas regardless of what they say. I am in the uk so don't have to worry about insurance.

Poppie - I think you are right, I will start to be more pushy.

UBTough - So sorry to read what you are going through at the moment and I sincerely hope you find something to help you. I am currently taking antidepressants. I am on my own, my husband died 6 years ago, 1 year before I got this horrible disease. I try to talk to my to sisters but they don't understand. One says just try and forget about it. Well that's really easy to do isn't it. I have been having IVIG for the last twenty years for a neuropathy. I have 40g every week so I don't think it helps the colitis. I have thought long nd hard about the side effects and risks and have got to the stage where I have to take them as far as aza is concerned. Biologicals however are different matter at the moment as they would potentially affect my neuropathy.

NSSG - I have thought about surgery. My consultant has ever mentioned it yet. Its a big step too. Glad to hear your experience has been positive. The IBD Nurse did mention surgery once and said for a woman of my age who has had children would not be able to have a j pouch. How many times a day do you go to the bathroom compared with flaring. Do you still worry about where the nearest toilet is?

So glad Mad Martha. I think the enemas are so helpful-- gotta try to push the GI's office around a little to get what you want. Please continue to keep us posted.
B

The side effects of some of these medicines are quite scary, but being sick in a flare is also not good long term either either. I was very nervous about starting azathioprine and then same with humira. The doctor said that is why they stress the importance of frequent labs to catch things early and it's so important to keep those timelines.

I hope your appt goes well and they can get things moving in good direction for you!