HealingWell
Search Close Search
☰

6 Months Into the IBD Diagnosis, What Happens Next?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/15/2017 12:41 AM (GMT 0)
Hi All,

I was diagnosed with IBD 6 months ago. My doctor has been recommending that I take the mesalamine suppositories. I take them for 30 days 1x per day, I'm off of them for 2 weeks, then symptoms show up again, then I take them for another 30 or 60 days. This has been the pattern for 6 months. My doctor says that the goal is to reach the point where I no longer have to take the medication.

I've gone through some of the great resources in this forum today. My question is: Is there something else that I can ask my doctor about? Many of you have suggested that I keep a food diary and be aware about what my body likes and doesn't like. Several of you have also said that it helps to really research ulcerative colitis and how the digestive system works. I'm starting to do that now. So far, my own experience is that 1) I'll have problems if I have more than a glass of alcohol and 2) I am able to spend more time off the meds and without any symptoms when I'm in the middle of training for a half marathon (as opposed to doing nothing or doing strength exercises at the gym).

On another note, I think I might ask my doctor to prescribe Ciproflaxacin. A doctor prescribed this to me a few years ago when I came in for what I thought was food poisoning. I took it for the prescribed amount of time (don't remember if it was one week or two weeks) and it cleared all the symptoms. I'm wondering if maybe I had my first sign of IBD then and just didn't know because it went away so fast. Have you taken Ciproflaxacin? Can you share your experience with it?

Here again are my 2 questions:
1. Is there a medication other than mesalamine that I can ask my doctor about?
2. Can you share your experience with Ciproflaxacin?


Thanks.
Posted 1/15/2017 4:38 AM (GMT 0)
How were you diagnosed? Scope? what did the scope show? I don't think with chronic IBD the goal is to get you off meds, the goal is to get you to the lowest dose that keeps you stable. I think it's great if a supp every few days keeps you at 100% forever, but often that isn't the case, not to say it won't be for you, and i hope it is. But please don't think you're ahead of it and be without medication in your arsenal. This illness can be very easy, or it can be very difficult. I hope yours is easy. I've not had too much experience with cipro, I've taken it here and there, and if it works for you, great, usually that would indicate something bacterial. I've never had it happen where I was cured from antibiotics, it's always been temporary, to the point, I needed o find something else to keep me stable after i completed a course, almost liek steroids, but that's just my experience. you should go to an IBD specialist and see what they say. I went to a regular GI for years, but a IBD GI can provide a lot more insight on the situation. It's their specialty and their area of interest.
Posted 1/15/2017 6:18 AM (GMT 0)
Are you taking oral mesalamine in addition to the suppositories? If not, you probably should be on oral mesalamines all the time, and suppositories as needed (some people use the all the time too; others occasionally; others not at all).

If mesalamines don't work, or don't work well enough, then you bump up to stronger meds. If you find yourself needing steroids fairly frequently, that's a sign you're not on the right medications for you. Stronger meds include imuran, 6mp, Remicade, Humira, Simponi, etc.

As for cipro, it may help you, but it will only be temporary. Some doctors use it, but most IBD doctors reserve its use for times it's really needed (when you get a superimposed infection; when you get an abscess; when you have a surgery that requires it; etc). It has its share of risks - it has a black-box warning now for tendon damage risks, if I remember correctly. So it's certainly not a long-term solution or something that should be used as a "maintenance" medication.
Posted 1/15/2017 6:21 AM (GMT 0)
I agree with notsosicklygirl. If your GI doctor is talking about getting you off medication for your IBD, you may want to get a second opinion and consider a change in doctors. Do you know what parts of your colon are affected? Suppositories only treat the rectum. Unless your IBD is limited to mild proctitis, you should be on oral medication along with the suppositories. There are several oral forms of mesalamine you can use; it will depend on what your doctor prefers, what is available to you (sometimes limited by insurance programs will cover) and what works best for you. Good luck.
Posted 1/15/2017 8:49 AM (GMT 0)
Cipro can also be prone to cause c-diff. Be careful with that one. (Though if you've taken it in the past with no issues, it may not be anything to worry about.)
Posted 1/15/2017 9:12 AM (GMT 0)
Thanks for your messages.

The GI doctor diagnosed me through a sigmoidoscopy. I've had 2 so far. I haven't had a colonoscopy. He said that I have a mild version of IBD because the inflammation is only in the first 2 centimeters of the rectum. I can still go to work and be social. I'm only taking the suppositories and he has not prescribed any oral medication. I have not taken any steroids. I will ask him about the oral forms of mesalamine. Thank you.

Thanks for the tip about the IBD specialist. I'll look into that as well. I'm an American living in Denmark and it's a bit intimidating to navigate through a foreign health care system. Really nice to find this forum.

I'm a bit frustrated that my talks with the GI doctor are very short. He's very focused on the present and I don't feel that I have a very good understanding of what the possibilities are for the future or of what I can be doing now to not get worse in the future. I guess it's just a matter of coming prepared with questions. For the last 6 months, I've been going on and off the mesalamine suppositories (as directed by the GI doctor) and I'm not quite sure whether this is what I'm going to be doing for the rest of my life. I had not spent a lot of time researching before because by prescribing time off the meds, I felt like the doctor was communicating to me that eventually, the symptoms would go away.

5 months into the treatment, I asked the GI doctor a couple of times about what could happen in the next 6 months. The first time, he asked me to wait for a response until the month's cycle of treatment was over. The second time I asked him, he told me that the goal was that hopefully I would reach a point where I would no longer have to take the meds. I guess my next question should be, what if I have to continue taking the meds? In what ways could this go from mild to more serious? Do I have any control over that?

Thanks again for the information. I'm looking forward to understanding this better and to asking better questions.
Posted 1/15/2017 1:09 PM (GMT 0)
IBD diagnosis requires the majority of us (there's some who use only diets or supplements) to take a daily maintenance medication. Canasa is a great maintenence for you if your active disease was limited to the rectum. Stopping canasa risks your IBD spreading in extent and severity, and risks a flare up. I wouldn't stop canasa at any point.
✚ New Topic ✚ Reply