@malangjohn I am so sorry to hear that you are dealing with ulcerative colitis! Are you feeling better? Do you still bleed?
I get the impression that you eventually were diagnosed and treated by a gastroenterologist.
Let me give you a link to Mayo Clinic's presentation on ulcerative colitis: https://www.mayoclinic.org/diseases-conditions/ulcerative-colitis/symptoms-causes/syc-20353326
It also seems to be an autoimmune disease like collagenous colitis, but it causes ulcers to form in the lining of your large intestine. In contrast, collagenous colitis and lymphocytic colitis have damage under the surface, not visible but seen on biopsy.
It is definitely important to learn about life style, diet and nutrition. You want to be as healthy as you can be to keep the illness under control.
It does not sound as if you have gotten much information from your doctor's office.
Would you have the opportunity to see gastroenterologists at a large university medical center or even Mayo Clinic?
Thanks for replying.
Yes so I have bleeding recently so the gastroenterology department here in South of Sweden increased my dose of pentasa(mesalazine) however I still feels like I'm not getting better. I tried to contact them and they gave me time 3 months. Which I feels is so frustrating even though they aren't the one that diagnosed me. It was in another country (my home country), I took my medical records with me to show them that I have been diagnosed with Ulcerative Colitis and I need help. The only thing they did is took blood and stool samples and confirmed that there inflammation. No diet plan or how to live with disease and not even investigate it further.
A month ago it gotten worse and they only increased the dose which had been prescribed by the doctor in my home country.
I have started researching myself about this disease and came across this platform which I am very grateful for this community. Helping out and listening to the people and providing them a good direction.
Regarding the possibilities to see doctors somewhere else yes I am open to it. I have actually booked online appointment with my home country Doctor to get more information about it. I have appointment in couple of days, hopefully I will get some helpful information from them.
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Nov 21, 2021
I know myself how difficult it is to figure out how the medical system works in other countries. I actually know how it works in Sweden- my home country ( south west) and my daughter lives there now, near Malmö.
I’m my opinion 3 months is too far off for a follow up on how the increased dose helps you.
Maybe you can try contact the gastroenterologist office and ask to speak to a doctor- or even go to the regular health care clinic(Vårdcentral) and be seen to see if you need another blood test since you are not feeling better. They should also be able to give you more information on the disease. They also should be able to arrange for you to see a dietician.
I hope other members with experience with ulcerative colitis will join the conversation.
Do you have any difficulties eating certain foods, seasonings?
I know myself how difficult it is to figure out how the medical system works in other countries. I actually know how it works in Sweden- my home country ( south west) and my daughter lives there now, near Malmö.
I’m my opinion 3 months is too far off for a follow up on how the increased dose helps you.
Maybe you can try contact the gastroenterologist office and ask to speak to a doctor- or even go to the regular health care clinic(Vårdcentral) and be seen to see if you need another blood test since you are not feeling better. They should also be able to give you more information on the disease. They also should be able to arrange for you to see a dietician.
I hope other members with experience with ulcerative colitis will join the conversation.
Do you have any difficulties eating certain foods, seasonings?
That's very helpful that you are familiar with this system. I have been living here in Karlskrona for 11 years and have really good impression of the health care. They do one thing good and that's the surgery which I have heard of.
Anyways, so yes I have contacted them 3 weeks ago(both vårdcentral and gastroenterology) to do further investigation and guidelines for diet plan. So they asked me to leave samples again which I did and nothing after that. They called me last Friday and said the values are ok. That's all. No diet guidelines no checking (since they are not the one who diagnosed me), I would like to go through a procedure here and they need to see and forward the knowledge to other doctors. The doctors changes here and the writes the journal about your visit so the next doctor read it. I don't think there is enough for other doctors to see because they have not any procedure. They only got the what I have provided them to see from my home country.
Regarding diet plan I have started my own research and started cooking food that is good for ulcerative colitis. Yesterday was my first day of my UC diet plan and I am following a book which I will share later. I don't remember what exactly its called right now.
Well, I made rosted Owen chicken marinated in olive oil, cummin, turmic, garlic and ginger past and salt. Cooked for two hours on 200 c. 1.5h the chicken was covered by folio and last 30 min with out folio so the chicken get some color.
It's was good and I felt good also I started lemon water (a little warm) one glass in the morning on empty stomach which helped me wash stomach before my day starts. I will figure out more about the diet as I read and try more. Thanks
That's very helpful that you are familiar with this system. I have been living here in Karlskrona for 11 years and have really good impression of the health care. They do one thing good and that's the surgery which I have heard of.
Anyways, so yes I have contacted them 3 weeks ago(both vårdcentral and gastroenterology) to do further investigation and guidelines for diet plan. So they asked me to leave samples again which I did and nothing after that. They called me last Friday and said the values are ok. That's all. No diet guidelines no checking (since they are not the one who diagnosed me), I would like to go through a procedure here and they need to see and forward the knowledge to other doctors. The doctors changes here and the writes the journal about your visit so the next doctor read it. I don't think there is enough for other doctors to see because they have not any procedure. They only got the what I have provided them to see from my home country.
Regarding diet plan I have started my own research and started cooking food that is good for ulcerative colitis. Yesterday was my first day of my UC diet plan and I am following a book which I will share later. I don't remember what exactly its called right now.
Well, I made rosted Owen chicken marinated in olive oil, cummin, turmic, garlic and ginger past and salt. Cooked for two hours on 200 c. 1.5h the chicken was covered by folio and last 30 min with out folio so the chicken get some color.
It's was good and I felt good also I started lemon water (a little warm) one glass in the morning on empty stomach which helped me wash stomach before my day starts. I will figure out more about the diet as I read and try more. Thanks
I think you are correct in that having a procedure there would make your problems more visible, so to say. It’s the same here- unless your records come from something like Mayo Clinic.
It’s great that you also learn about diet and cook yourself. It’s not easy living with inflammatory bowel disease.
Do you keep a journal?
I know myself how difficult it is to figure out how the medical system works in other countries. I actually know how it works in Sweden- my home country ( south west) and my daughter lives there now, near Malmö.
I’m my opinion 3 months is too far off for a follow up on how the increased dose helps you.
Maybe you can try contact the gastroenterologist office and ask to speak to a doctor- or even go to the regular health care clinic(Vårdcentral) and be seen to see if you need another blood test since you are not feeling better. They should also be able to give you more information on the disease. They also should be able to arrange for you to see a dietician.
I hope other members with experience with ulcerative colitis will join the conversation.
Do you have any difficulties eating certain foods, seasonings?
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Nov 22, 2021
@slb50 I know how discouraging it is when all tests are “ normal “ and you live with constant pain and discomfort.
I agree with previous comments that getting an appointment at clinics like Mayo Clinic or Cleveland Clinic sounds like a good plan.
I had similar experience and eventually got an appointment at Mayo. It’s a whole different level of care there.
Did you also have a colonoscopy?
I think you are correct in that having a procedure there would make your problems more visible, so to say. It’s the same here- unless your records come from something like Mayo Clinic.
It’s great that you also learn about diet and cook yourself. It’s not easy living with inflammatory bowel disease.
Do you keep a journal?
Yes I do keep journal and also I follow the diet plan which is the third day today and doing pretty well.
I have cut off from gluten (I am not allergic). Loctos and strong spices.
Cut of from whole grains and started soft /cooked food.
Started drinking a glass of warm lemonated water in the morning before breakfast.
In the fruits i am using banana, blueberries and an orange.
These are only when I feel bad(flare condition).
I have Collagenous colitis which is microscopic and I’m staying healthy by eating Activia taking a 20 billion probiotic and 1 tablespoon of psyllium husk or Metamucil in water every morning
Hi @stellawf ,
I agree. I can keep my occurrences of lymphocytic microscopic colitis under control by starting with Imodium as needed and adding Metamucil daily. After everything is under control I can stop the Imodium and just take Metamucil daily. I can always use the Imodium if needed.
I feel for anyone with this disorder. It consumes your life. Not much fun.
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Thanks for replying.
Yes so I have bleeding recently so the gastroenterology department here in South of Sweden increased my dose of pentasa(mesalazine) however I still feels like I'm not getting better. I tried to contact them and they gave me time 3 months. Which I feels is so frustrating even though they aren't the one that diagnosed me. It was in another country (my home country), I took my medical records with me to show them that I have been diagnosed with Ulcerative Colitis and I need help. The only thing they did is took blood and stool samples and confirmed that there inflammation. No diet plan or how to live with disease and not even investigate it further.
A month ago it gotten worse and they only increased the dose which had been prescribed by the doctor in my home country.
I have started researching myself about this disease and came across this platform which I am very grateful for this community. Helping out and listening to the people and providing them a good direction.
Regarding the possibilities to see doctors somewhere else yes I am open to it. I have actually booked online appointment with my home country Doctor to get more information about it. I have appointment in couple of days, hopefully I will get some helpful information from them.
I know myself how difficult it is to figure out how the medical system works in other countries. I actually know how it works in Sweden- my home country ( south west) and my daughter lives there now, near Malmö.
I’m my opinion 3 months is too far off for a follow up on how the increased dose helps you.
Maybe you can try contact the gastroenterologist office and ask to speak to a doctor- or even go to the regular health care clinic(Vårdcentral) and be seen to see if you need another blood test since you are not feeling better. They should also be able to give you more information on the disease. They also should be able to arrange for you to see a dietician.
I hope other members with experience with ulcerative colitis will join the conversation.
Do you have any difficulties eating certain foods, seasonings?
-
Like -
Helpful -
Hug
2 ReactionsThat's very helpful that you are familiar with this system. I have been living here in Karlskrona for 11 years and have really good impression of the health care. They do one thing good and that's the surgery which I have heard of.
Anyways, so yes I have contacted them 3 weeks ago(both vårdcentral and gastroenterology) to do further investigation and guidelines for diet plan. So they asked me to leave samples again which I did and nothing after that. They called me last Friday and said the values are ok. That's all. No diet guidelines no checking (since they are not the one who diagnosed me), I would like to go through a procedure here and they need to see and forward the knowledge to other doctors. The doctors changes here and the writes the journal about your visit so the next doctor read it. I don't think there is enough for other doctors to see because they have not any procedure. They only got the what I have provided them to see from my home country.
Regarding diet plan I have started my own research and started cooking food that is good for ulcerative colitis. Yesterday was my first day of my UC diet plan and I am following a book which I will share later. I don't remember what exactly its called right now.
Well, I made rosted Owen chicken marinated in olive oil, cummin, turmic, garlic and ginger past and salt. Cooked for two hours on 200 c. 1.5h the chicken was covered by folio and last 30 min with out folio so the chicken get some color.
It's was good and I felt good also I started lemon water (a little warm) one glass in the morning on empty stomach which helped me wash stomach before my day starts. I will figure out more about the diet as I read and try more. Thanks
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Like -
Helpful -
Hug
1 ReactionI think you are correct in that having a procedure there would make your problems more visible, so to say. It’s the same here- unless your records come from something like Mayo Clinic.
It’s great that you also learn about diet and cook yourself. It’s not easy living with inflammatory bowel disease.
Do you keep a journal?
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Like -
Helpful -
Hug
2 ReactionsYes but to date I do not have a diagnosis just severe diarrhea and pain. On rt side since April 2021 Ive lost 19 lbs
@slb50 I know how discouraging it is when all tests are “ normal “ and you live with constant pain and discomfort.
I agree with previous comments that getting an appointment at clinics like Mayo Clinic or Cleveland Clinic sounds like a good plan.
I had similar experience and eventually got an appointment at Mayo. It’s a whole different level of care there.
Did you also have a colonoscopy?
Yes I do keep journal and also I follow the diet plan which is the third day today and doing pretty well.
I have cut off from gluten (I am not allergic). Loctos and strong spices.
Cut of from whole grains and started soft /cooked food.
Started drinking a glass of warm lemonated water in the morning before breakfast.
In the fruits i am using banana, blueberries and an orange.
These are only when I feel bad(flare condition).
-
Like -
Helpful -
Hug
1 ReactionIt sounds like you are off to a very good start managing your diet!
@tlfrench I have been under the care of Dr Schaffner at Mayo in Rochester. He is great. Very willing to work with me even after going home.
Hi @stellawf ,
I agree. I can keep my occurrences of lymphocytic microscopic colitis under control by starting with Imodium as needed and adding Metamucil daily. After everything is under control I can stop the Imodium and just take Metamucil daily. I can always use the Imodium if needed.
I feel for anyone with this disorder. It consumes your life. Not much fun.
-
Like -
Helpful -
Hug
1 Reaction