• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

When do you know to visit your GI?

Hello,

I've been very lucky, as I have been diagnosed with Crohn's for many years, but haven't experienced noticeable flares since the original problem. I use pentasa to manage the disease. Only recently have I had problems with flares.

How do you know when to become concerned about a flare, and when it is time to visit your GI?

I was advised to visit my GI only if there was ongoing diarrhea and ongoing blood. Before my diagnosis, I was not seeing any blood and very little diarrhea. However, a hole was found in the bowel.

Wondering when it is appropriate to see your GI.

Simone
 

Jennifer

Adminstrator
Staff member
Location
SLO
Hi Simone and welcome to the forum! :D

It's important to see your GI every 2-4 years at least for scopes to make sure that everything is doing ok inside but that's mainly for when you're in remission. During a flare however it's important to let your GI know if there are any changes in your symptoms to see if they want to do any tests or med changes. Pentasa and Mesalamine medications aren't the best for treating Crohn's and could allow inflammation to build up more scar tissue and cause other problems. Mesalamine is topical so it will only help with surface inflammation yet Crohn's can cause inflammation deeper in the intestinal lining.

What are your current symptoms? Was the hole in your bowel found recently or were you referring to what happened in the past? Was/is it a perforation or a fistula?

If you haven't seen your GI in a while (maybe a couple years or more) and you're starting to have symptoms then make an appointment with them. If they completely dismiss you and say that you need to have constant blood loss and diarrhea to be seen then please find a new GI. The goal here is to prevent you from getting that bad in the first place.
 
Hi Jennifer,

Thanks for your reply!

I was diagnosed over 20 years ago, the bowel was perforated. But I haven't had many noticeable flares since then (lucky gal). I have been seeing my GI yearly, and I've had colonoscopies. I had a sigmoidoscopy a few months ago, with good results. However, I recently had about three weeks of flare symptoms (lower abdominal pain, fatigue, diarrhea that went away with the use of Imodium, and the common cold on top of it). I visited my GI who reminded me that the scope was good, and therefore doesn't want to do another scope, and will not make any changes to my current treatment. Which is fine, I was really just looking for reassurance about my safety. I mentioned that I wasn't sure when I should be concerned, and was told that symptoms of repeated urgent diarrhea and blood are indications that treatment can be changed, and at that time, I would book a visit.

I just don't know how often Crohn's sufferers respond to flares with a visit to the GI. I will see my family doctor, if I have another flare, to get her opinion. Things have settled down now, and I can eat foods other than cottage cheese, cooked vegetables and fish (yay!), but I'm still not convinced that it's a good idea to wait for blood before taking action. Mainly because blood was not in the water back when I wasn't yet diagnosed. The major peaking symptom back then was severe, unrelenting lower abdominal pain. Not blood and diarrhea. I had bouts of canker sores.

Thanks for your support, Jennifer, I'm glad I came across this forum.

Simone.
 

Catherine

Moderator
My daughter symptoms to contact the GI are severe pain and weight loss.

She has never had the big d or blood loss.
 

Jennifer

Adminstrator
Staff member
Location
SLO
For me personally my GI would want me to go to the ER if I had sever pain or blood loss. I'm hopefully getting over my first flare after a 14 year long remission and my GI really wants to get me back into remission so he wants me to contact him if there's any change be it increased bowel movements, pain, mucus in stool, nausea, vomiting, joint pain, extreme fatigue etc. I also have blood work done once a month (mainly because I'm on 6MP again with Allopurinol) so if he ever notices anything in my blood work he calls me to see how I'm feeling and gives me instructions if needed.

You can worry when you have blood loss, vomiting, extreme pain, extreme fatigue, extreme weight loss etc but as mentioned it's best to avoid these situations if possible. Just because a scope looks good a couple months back doesn't mean things can't change quickly. I had tests done that showed everything was normal and less than two months later I was in the hospital with an obstruction. Inflammation can come and go very quickly so one thing you could do is have blood work done every few months to check for inflammation and have other general blood work done (CRP, ESR, CBC etc). Blood work isn't really invasive and neither are stool tests for inflammation if your feel it's needed (especially if you have a lot of symptoms but your blood work isn't showing inflammation which can happen with some people so have your stool tested instead).

Hope your symptoms go away and don't come back though. :hug:
 

DustyKat

Super Moderator
My kids GI has said that aside from routine visits every 6 months he wants to be contacted anytime symptoms reappear regardless of their nature.

I personally don’t agree with you being given a blanket statement of only being concerned if you have blood and/or ongoing diarrhoea. What is the point of that if they have never been a symptom for you in the first place. You need to go off what is normal and what is abnormal for you and no one else.

This is a guide that the GI gave me some time ago:

When to call the Doctor:

Once you get to know your Doctor you will have a better understanding of what he/she wants you to phone about. These guidelines should be followed for most situations and it is hoped you will find them useful.

Telephone calls to your Doctor need to be separated into there categories-

Routine

Urgent

Emergency

It can also be helpful to take time to get to know your Doctor's secretary or any office staff. This can assist when you are trying to reach your Doctor, whether you are telephoning or visiting personally. You should prepare a clear list of questions to ask, be concise, do not make the list of questions too long and decide what is important before you telephone or visit.

Find out your Doctor's timetable, i.e. when he/she is available at the consulting rooms/surgery you attend. Remember they may attend more than one surgery during the week. Endeavour to ascertain:

Telephone numbers (one or more)
Surgery hours
Most convenient time to call
Whether convenient to leave a message asking the Doctor to return your call

Routine Call

You should arrange to call your Doctor's surgery after a visit, to obtain results of blood tests, laboratory tests, or to report any changes in your symptoms or side effects of new medication.

Urgent Call (but not an emergency)

Any symptom, e.g. nausea, headache, a rash on your body, which you think might relate to your disease or its treatment. It may even be a new symptom of your illness, such as painful tender bumps on your legs which often indicate the start of a flare up (erythema nodosum).

Emergency Call

Dramatic change in your illness could include any the following:

Severe abdominal pain which persists for longer than 1 hour
Significant or new rectal bleeding
Persistent vomiting, accompanied by stopping of bowel movements
Drastic changes in bowel movements without passing gas
Sudden weight loss of over 2 and half kgs in a few days

If you are unable to contact your Doctor in an emergency, you can go directly to the nearest Public Hospital Emergency Section, or the hospital you usually attend. Explain your illness, etc. Give your Doctor's name and identify any medications you are presently taking.

Through being able to determine (routine - urgent - emergency) nature of calls, you will greatly enhance the relationship with your Doctor. Also it will give you and your family better judgement about when to call your doctor and many people are hesitant to call their Doctor at times.
Remember, always carry with you your Doctor's/Surgeon's card.

Another good idea is to place your Doctor's timetable and telephone number near the telephone. Note any dates your Doctor will be unavailable, plus details of another backup Doctor your Doctor recommend.
So given your circumstances I would be making a routine call.

Dusty. xxx
 
That guide is helpful, thanks Dusty. It seems like you have GIs who are helpful, collaborative and approachable. I appreciate your comments, it gives me better perspective. You echo my own thoughts about it seeming strange to wait for serious damage before seeking care...and a healthy scope doesn't mean that there can't be problems a short period later. Jennifer, I hope your flare passes soon and stays away for good.
 
Top