18/5 yers old diagnised with UC - Proctitis

[JackABCD]

Hi All,

My daughter is 18.5 years old.

For the last 2 months she has blood in the stool, many times with mucus, very red. Bedside it, she feels well.
She is a healthy person, there is not any other medical problems today or in the past.

All blood test found to be OK.
Last night she passed Colonoscopy where doctor diagnosed Proctitis.

Here is what we have been told by the doc after the Colonoscopy:
He found a very focal proctitis, 10 cm in length.
He want also to make MRI test and also Gastroscopy.
He gave her aminosalicylicacid 1 gram for 30 days.
He believe that this is proctitis. This is in most cases a chronic disease, the disease is usually in remission
With flare-ups from time to time. During flare-up the person has to take the meds.
But beside that a person with proctitis leaves normal life.
No one know the cause for this disease.

I would like to add:
It is probably not the case where the proctitis relate with STD.
We don’t know about anyone in our family with this problem.
Since about 3 months ago out daughter moved from home onto a college, her diet and life style had been changed, she is very happy in the college with the new friend and all.

I would be happy if people here can tell me:
1) How is it to carry this disease ?
2) Is it a chronic disease?
3) Could it be related to the change in our daughter life style since she moved to the college ?
4) What might be the cause for this disease in her case ?t
5) What should we do ?

We are very worried,
We would be happy to learn from people here who knows about this disease.

Thank you,
Jack

[JackABCD]

I read your things several times.
I will take them to my deep attention.
Thank you,
Jack

[Megadodger]

1) How is it to carry this disease ?
- in my understanding this is just a type of ulcerative colitis that is concentrated in a specific area, correct? Carrying this disease depends on the mentality and the stability of the person. Refusing medication, living a stressful life and eating a bad diet can indeed make dealing with this condition much worse. I say it depends on the person because I spent from gr7-gr11 going "this is just the way I am, it's nothing to worry about; my body just doesn't like me." Keeping that mentality helps a person deal because if we stay positive and show that we are fine then less people worry and scare us. The condition can cause a lot of problems when it's in a severe form, so that can cause a lot of hidden fears as well.
2) Is it a chronic disease?
This is more than often a chronic condition. Fortunately, sometimes these conditions are misdiagnosed. My brother was diagnosed with Crohns last year (I have been fighting Ulcerative Colitis since a child) and I was not okay with his diagnosis. He had never shown symptoms before and I only have this condition because I was over treated for guardia and my body lost touch of what was going on. Anyway, he was put on a stress free schedule, told he eat properly, and took more time for himself and then a few weeks later found out that his so called "Crohn's disease" is actually IBS. Though IBS and IBD both flare with stress, IBS could be much more tolerable and an easier diagnosis to swallow. If you trust your doctor diagnosis, that's great, but keep the idea of IBS close in mind too.
3) Could it be related to the change in our daughter life style since she moved to the college ?
Yes. Stress triggers many different immune symptoms and can change a lot. Even if her routine with her diet has changed with going to college that could effect it as well.
4) What might be the cause for this disease in her case ?t
Doctors never know a cause. It could be a parasite, it could be autoimmune, it could be an infection, it could be genetic. This is something that you will have to wait and see what it truly is and how it presents itself.
5) What should we do
BE HER SUPPORT. Keep open conversation. Please understand that you may talk to the doctors or do a lot of research but you are not experiencing what she is. The longer she has these symptoms the more she will feel alone in the aspect that no one understands what she is going through. She may be perfectly happy and accept that she has this condition, but knowing that she can reach out and hold your hand if need be is all we, young adults with a chronic illness, ask of our parents.





If you have the chance of talking to her, if you could get her to talk to her doctor about a different medication. Yes, medication *****. I know first hand, BUT inflammation and disease can spread. When I was first diagnosed the only part effect with the first little bit of my colon, I spent years rejecting medications and putting them off and then when we did the next scope everything spread and surgery was inevitable. I had surgery last September and it was the best thing that ever happened to me, but I wish I listened to my doctor year ago and taken my medication or I maybe wouldn't be 20 years old with an ileostomy bag.

[JackABCD]

Since my daughter had been diagnosed with Proctitis she is taking Rafassal  as Suppositories form.
After some months she stopped it and she does not want to take any more. She is saying that is cause her a lot of pain and discomfort. She is willing to try another med or another form of Rafassal.
Does someone here has any good advice or experience ?
Thank you

[Dr. Kokil Mathur]

First we need to find the cause--lifestyle changes and post diagnosis life will depend on the cause. Normally, people lead anormal life with minor diet adjustments.

[Dr. Kokil Mathur]

Hi Jack!

I appreciate your worries about your daughter. Are you sure that the proctitis is not related to STD? Please ask her mother to talk to her regarding her sexual history and it may be a good idea to rule out STD if there is a suggestive history.

Other than this, proctitis could be due to bacterial or fungal infection. Hence, it would be important to go for a stool culture.

Crohn’s disease and ulcerative colitis too can present with proctitis. Yes, a change in diet can affect the gut in people prone to inflammatory bowel disorder. So, yes, may be it would be a good idea to maintain a diary of what she eats and bleeding in stool to check if there is a correlation.

It may be a good idea to go for a video capsule endoscopy as this can visualize the whole gut. Please discuss this in detail with a GI specialist she is seeing. Take care!

The medical advice given should not be considered a substitute for medical care provided by a doctor who can examine you. The advice may not be completely correct for you as the doctor cannot examine you and does not know your complete medical history. Hence this reply to your post should only be considered as a guiding line and you must consult your doctor at the earliest for your medical problem.