5 months after an ileectomy...please advise..

[sarahmz83]

Hello...I am new to this forum.....
History:
I was dignosed with Chron's last March after beening unbearably sick for 7 months. I was started on a million different treatments. After no luck and a new pain, my doctor had another CTScan (I think I had about 6 within a year) done. It revealed a new cyst that needed to be taken care of immediatly. I had a ileectomy this past June. It took a long time to heal but now I seem to doing great, at least I feel great. In August my husband (military) was transfered to another state and I now have to see a new doctor. (not looking forward to explaining the last year and a half to this new doctor)The last time I went to the doctor was in July so it's been 4 months. I was given the all clear and it looks like I have healed well and I have been pain and symptom free since the surgery.
Questions:
How often do I need to see a doctor if I am feeling good and seem to have no problems?
Since I have not seen this doctor in the past what should I expect (tests?)?
When I first got sick I was pretty bad off meaning I didn't have pain or symptoms untill my intestines were terribly corroded. I am starting to wonder how I will know if something isn't right, will my new doctor run periodic tests (CT Scans I would assume) to see how things look?
I would appreciate any advise/answers/experience or any other input you may have. Thanks-SP

 

[imisspopcorn]

Welcome Sarah...
I'm glad you are doing better. I would consult with a GI in your new state, even if you are feeling okay. Here are my reasons.
1. It always takes time to get an appointment, usually 6-8weeks. If you should get sick, you don't want to be wasting any time.
2. I had part of my ileum removed, and within 6 months there was evidence of the disease returning during a colonoscopy.
3. Doctors are always changing how they approach this illness. Even though you are doing well now, he may advise you to take some sort of maintenance medication....Are you currently on anything now???

I hope this helps. Welcome again. You may want to look at the treatment threads for more info.

 

[Cookie]

Hi Sarah. Welcome to the forum. I have not had an ileectomy, so i have no advice to offer in that regard, but I am glad to hear that you are feeling much better.

If you are changing doctors, it is a good idea to have them transfer your file to your new doc. Usually you just need to request it in writing and they will copy the whole thing and send it over. You can call their office and ask them what you need to do. This is a good idea because it will have all of your test results, including images, so it will help eliminate some of the need for repeat testing, not to mention, it will probably be more comprehensive than the info you can give your new doc from memory.

When I was not flaring, I would see my GI every 6 months at first, and then down to once a year. My GI likes to do a colonoscopy (or whatever test suits your situation) every four years. I am sure everyone is different, but that is my situation

Best of luck to you!

 

[sarahmz83]

I am currently not on any maintenance meds....I am trying to avoid meds as long as possible. Maybe that is why I have not seen a doctor in several months. I dont wanna!!! (stopmping my feet like a child) After I knew I was healed from the surgery I didn't want to see another doctor or go through another test in my life. But....now I feel closer to ready....Thanks so much for the advise and the warm welcome!
imisspopcorn- I am terrified my doctor will want to put me on an immune suppressor. What other types of meds are prescribed for maintenance?

 

[imisspopcorn]

He may put you on an anti-inflammatory med like Asacol or Pentasa. Those are first line type of meds. It also depends on your blood work, and how elevated your inflammation markers are.(CRP/ SED rate) It really depends on your overall symptoms such as # of bowel movements and pain. Try not to worry too much about the immune suppressor meds, kind of like "you'll cross that bridge when you get to it". Research the treatments so you can ask him questions. The more info you have the better. Ask us as many questions as you need answered. There are a ton of people here with varying symptoms and treatments.

 

[Crohn's 35]

I am currently not on any maintenance meds....I am trying to avoid meds as long as possible. Maybe that is why I have not seen a doctor in several months. I dont wanna!!! (stopmping my feet like a child) After I knew I was healed from the surgery I didn't want to see another doctor or go through another test in my life. But....now I feel closer to ready....Thanks so much for the advise and the warm welcome!
imisspopcorn- I am terrified my doctor will want to put me on an immune suppressor. What other types of meds are prescribed for maintenance?

Hi Sarah, I have had a resection and after that I was on Entocort, which is a mild to moderate type of steroid but has very little side effects, it helped after my surgery for 7 years +.

Even if you feel good, you still should see a Gi at least every 6 months. When I had felt better and was on meds, I didnt go back, not realizing after each appt you go to the reception and she tells you when to come back, and I didnt know this and Crohn' s didnt have alot of information 20 years back. When I didn't feel good, my Gi blasted me and told me not to waste his time coming back when I felt like it. I didnt know protocol, but he was the one who found my Crohns in the first place. My new Gi now I see him when I need to or 6 months, my next appt is in April.

Have your blood work done too, sometimes you can be infected and not know it. Then a flare comes and hard to control. Take care and wecome.

 

[sarahmz83]

Thanks everyone..... I was on Entecort for 3 months before my surgery. It helped for about 3 weeks then stopped. My doc took me off the Entecort and restarted 2 weeks later to see if I felt a difference. It never worked as good as it did when I first took it. Pentasa (by its self and mixed with other meds) did nothing for me when I was in a bad flare. Maybe they didn't work because I was so far gone. Now maybe they could keep me well.
Thanks again everyone.