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Colonoscopy findings--will someone please translate?

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Ulcerative Colitis
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Posted 6/7/2014 12:16 AM (GMT 0)
Hi everyone,

I had a colonoscopy this morning and I am happy to report that the left-sided inflammation is milder than it was 10 months ago! The pictures of my colon look better too--better color, less of the yellow, bubbly stuff (is that inflammation or ulcers?) I don't know what any of the acronyms under the doctor's recommendations stand for and I was hoping you can help me out. Also, do you think it is ok for me to taper off the rectal mesalamine completely if I am doing well in 6 months? I have been on them for one week and have such a good response to them--almost no blood/often no blood, reduced urgency--and I want to know what you think.

Here are the official findings:

Rectal exam normal
Minimal left side inflammation to 30 cm. Biopsied, jar A. Normal to ileum otherwise. Retroflexion normal.

Endoscopic diagnosis: Improved colitis on current regimen.

Recommendations: Follow-up biopsies. I think to help with lifestyle, she can go to enemas 3x/week and will follow up with PAC in 6 months with cbc, cmp, esr, crp to assess how she is doing. At that time may be able to eliminate enemas and continue with three times a day Colazal if she is clinically well.

Thank you!
Posted 6/7/2014 1:42 AM (GMT 0)
Not sure about PAC - maybe Patient After Care? - but everything else refers to blood tests. CBC = complete blood count; CMP = complete metabolic panel; ESR = erythrocyte sedimentation rate; CRP = c-reactive protein

I'm too tired to explain what each and every one means, but googling will give you more info. The biopsies will give your doctor more info about your disease at the cellular level.

Dunno about the enemas, sorry. Probably better to make a new thread about that one if you get no more responses here.
Posted 6/7/2014 2:10 AM (GMT 0)
Thank you, Nice Cup of Tea. I appreciate it! I will search Google so I can better understand those blood tests.

I will definitely post another question about the enemas if I don't see responses here. I was bleeding so much for more than a year and then I started the enemas and the bleeding lessened immediately. Since I responded to the enemas so quickly with such a positive outcome the thought of going off them is a little scary. I'd much rather take enemas than bleed all the time.
Posted 6/7/2014 3:10 AM (GMT 0)
Didn't you have to push your DR to give you the enemas in the first place? Why is this DR in such a rush to taper you off the enemas?

The wisdom of this forum is that you do not taper the enemas until you stop seeing blood. I would taper very slowly and I would make no plans to stop completely until you have been seriously in a solid remission for a good long time.

I just posted to another thread about how I was on enemas at some frequency or another for maybe 5 years. Eventually I just forgot to use them because I had no more symptoms of rectal inflammation. You're doing great and I'm so glad you're feeling better.
Posted 6/7/2014 3:50 AM (GMT 0)
Hi kazbern,

Thanks for writing! Yes, I had to push for the enemas, and then when he prescribed them he only gave me a one month rx. I need to call to ask for more in a couple of weeks. I thought for sure when I told him this morning how much the enemas helped with the bleeding he would want me to stay on them for a long time. But then I reviewed the paperwork he gave me after I returned home and I was surprised. I have only been taking them every day for one week and dropping to 3xs/week already seems like a fast taper even though the bleeding is gone most days and only a tiny amount others. If you were me, and the bleeding was gone most days after only a week, would you start taking it only 3xs/day and see how it goes or would you keep taking it every day for awhile longer?
Posted 6/7/2014 4:12 AM (GMT 0)
This forum is very VERY into maintenance enemas... forever.
That's good he wants you to do them atleast 3x a week. But I wouldnt go down to that dose until bleeding totally stops.
Then 3x a week for maintenance... and hopefully only 1-2 x a week maintenance... until like Kaz said... years.

That is the most common response you will probably get here :)
Posted 6/7/2014 12:09 PM (GMT 0)
I wonder too why my GI is quick to get me off the enemas and suppositories in the past. I believe that even though your bleeding has stopped your colon is still healing and that takes a few weeks. I have had a good response to enemas and am going to use them for another good few weeks until I start to taper. My IBD Nurse agreed with this but I have an appointment with my consultant in two weeks so will probably have to argue my case.
Posted 6/7/2014 12:15 PM (GMT 0)
I would never get completely off of rectal meds. Even if everything showed clear. Maintenance dose yes but never stop completely.
Posted 6/8/2014 12:58 AM (GMT 0)
Thanks so much! I really appreciate this feedback. I've had some bad experiences with doctors (I'm sure many of us have) and it's made me skeptical of their decisions. My previous GI doctor tapered my Colazal quickly (after 13 weeks I went to the maintenance dose) and my health declined rapidly, and now my new GI doctor wants to taper the enemas right away. I don't understand why they're in such a hurry to taper if the patient isn't experiencing side effects from the medication. My first GI doctor was terrible. When I told him things really started to go downhill after we tapered the Colazal, he didn't tell me to up the dose, he didn't want to do any more tests, and he was totally unsympathetic and would just get irritated with me for asking so many questions. I still get worked up just thinking about it.
Posted 6/8/2014 1:39 AM (GMT 0)
I know what you mean colitis32. I have had some experiences like that in my life, too.

You know what you call the guy who graduates last in his medical school class?

Doctor.

Yeah.

My first GI was awful. about 6 months after I realized how bad a GI he was, I was visiting my parents in my home town, 1000 miles away from where I live now, and an old neighbor was there, someone I hadn't seen in 20 years or more. We were talking about our lives and I must have mentioned my health issues of recent months. She said, "Oh, if you're in XX city, you must see my old friend BXXXX DXXXXX! He's a GI, and he's the best."

Well that was my GI! And he was not the best! Ack, I didn't even know what to say. I was ultimately not able to restrain myself and I said that I did see him, and he did not do me any favors with his crappy diagnostics and his waiting for a year of rectal bleeding before even doing a half-assed flex sig.

GRRRR. See, I get worked up too. And that was 13 years ago!
Posted 6/8/2014 3:24 AM (GMT 0)
Hi kazbern,

I'm sorry you had such a bad experience with your first GI. It's good that you told your old neighbor how you truly felt about your doctor. It sounds like she was recommending him because he was a friend and not because he was her doctor and she had a good experience with him. I hope you like your current GI doctor much better.
Posted 6/8/2014 11:06 AM (GMT 0)
Thanks colitis32, it's all good now. I'm actually on my 3rd GI - been with him for 7+ years now. He's thinking of retiring soon and I'm going to be very sad to have to find a new one, but I'm glad I've had his help getting me into a solid remission.

Have a great Sunday.
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