Thought I was improving....GI says no. Frustrated!

I have been on hydrocort enemas for almost 4 1/2 weeks now after my flex sig the end of June. GI said inflammation looked severe on scope. Biopsies said moderate. He agreed to let me try hydrocort enemas even though he has been leaning towards starting humira. Oh and to back up my UC is proctitis w/ my primary symptoms being urgency, bleeding, mucous, constipation.

After 4 1/2 weeks on enemas my bleeding has decreased a ton. Say from a 10 to a 3 on a scale. Urgency is almost gone. Constipation and pain are gone. Down from 20 trips (99% of which were blood or mucous on) to 7. I actually have solid bms everyday now.

Negatives...still bleeding a bit. Still have 3-4 trips a day of just gas and mucous (non bloody or occasionally light blood).

Saw my GI for follow up from flex sig and update on how enemas were working. I was the last appt. of the day today and he was not in the best mood. I actually normally really like my GI. I don't think today was a good day for him. Anyway he told me at this point I should be at 3-4 bms/day. No bleeding. No mucous.

I went in thinking he was going to be happy with my progress (as I am). However I left feeling very discouraged. He wants me to go ahead and do the hep and tb bloodwork and is suggesting I start humira.

I told him I thought the inflammation was bad enough at the scope that I needed more time on the enemas. I told him ultimately I wasn't opposed to humira or remicade but I just do not feel like I am there yet. Then he starts talking about the UC spreading, removing my colon. It was a terrible visit...did I mention that yet?!?!

We left it at continuing the hydrocort enemas (at my insistence). I will continue on them until I see him Sept. 21.

Ugh. Sorry this is really just a vent!

I think improvement is a huge step. I hate when GIs discourage us. It sounds to me like you're doing well, hopefully by the 21st, you will be even better. Why is he recommending Humira over Remicade? My GI wanted to let me try Humira but she said insurance wouldn't approve it unless I tried Remicade first. I ended up not doing either because I had a sig scope and it looked mild. She said not perfect but not terrible. She did say it warrants Remicade if the symptoms are causing me problems. A few days later, I felt quite a bit better and she said we would hold off on additional treatment until it is necessary. I was really happy yo hear this. Are you using the enemas at night? When I was in bad shape, I used cortifoam at night and Canasa in th morning. Are you using Cortifoam or cortisone enemas? I never used cortisone enemas, are they higher dosage? Cortifoam is great because it's easy to retain.

He was leaning towards humira b/c of the convenience. I am a sahm of a little one and he thinks would be easier to do the shots myself than to go to the office for infusions. My hubby is coming w/ me in Sept so if we discuss again we can go over all the pros and cons of humira versus remicade.

I am doing the hydro cort enemas (100mg) each night. I am able to retain them all night. Unfortunately canasa and rowasa seem to make things worse for me (after trying them for months).

notsosicklygirl said...
I think improvement is a huge step. I hate when GIs discourage us. It sounds to me like you're doing well, hopefully by the 21st, you will be even better. Why is he recommending Humira over Remicade? My GI wanted to let me try Humira but she said insurance wouldn't approve it unless I tried Remicade first. I ended up not doing either because I had a sig scope and it looked mild. She said not perfect but not terrible. She did say it warrants Remicade if the symptoms are causing me problems. A few days later, I felt quite a bit better and she said we would hold off on additional treatment until it is necessary. I was really happy yo hear this. Are you using the enemas at night? When I was in bad shape, I used cortifoam at night and Canasa in th morning. Are you using Cortifoam or cortisone enemas? I never used cortisone enemas, are they higher dosage? Cortifoam is great because it's easy to retain.

Yes! Definitely getting second opinion to be sure. Hubby and I just discussed that.

Your doctor can suggest a course of treatment, but ultimately, it's your body and it's your decision. I think too many times patients let themselves be pressured into a decision they're not comfortable with because they feel they have no choice. Doctors are human. They have bad days - as you noticed - they have personal biases concerning treatments, they don't always know all the latest research and options, and sometimes they issue thoughtless and discouraging generalizations. Doctors should be our partners in the healing process, but you are your own best health advocate and you owe it to yourself to educate yourself on all options and make your own choices.

There's absolutely nothing wrong with telling your doctor you're pleased with the progress you've made and you want to hold off on ramping up the drugs to see if you continue to improve without them. I'd certainly get a second opinion, too.

Thanks guys! Yes I made my Sept appt for 9am! No more afternoon/grouchy GI for me!!

I got a referral for a IBD specialist I plan to set up an appt. with as well.

pink1,

I was in a similar situation at my last scope in September, I went in telling the doctor that I was feeling great, no blood, no mucus, formed bm's 3 every morning and that I was probably in remission.  He then proceeded with my colonoscopy and then with blood work.  Well the colonoscopy showed inflammation throughout my colon supposidly, and the bloodwork was just a little off. 

Usually inflammation is just in the last couple of inches for me but the scope showed it throughout.  I just didn't understand why I felt so great.

 Well I said I am having no symptoms and that the cleanse and stress leading up to the scope probably irritated things, they all said unlikely.  He then talked about Humira and I freaked and said I will take my tablets as scheduled and use my hycort and he said ok but at the next apt if there is still inflammation Humira is the next step. 

I also cleaned up my diet and started to be more careful of what I was eating

Well it is now the end of JUly and I am fine still no blood, mucus or diahrea.

So listen to your body, you should know if you need something more or not.