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My story

Location
London,
I am not sure I am in the right place :)) I am sorry I have never used forums before and quite confused :))

Hi, all. I am very sorry as my English is not perfect, please be patient :)
I have been ill from 1997 (at age 26), but for a long time nobody could tell me what is going on with me. I had diarrhoea all the time, I had cramps in my intestines time to time, I was loosing weight very quickly and had very high inflammation markers in my blood tests (PLT 600, CRP 12, very low haemoglobin). I went through a lot of tests, with no results. I start to monitor what is affecting me more, what kind of food causes diarrhoea even more. I realised that stress, unhappiness with myself, probably caused my disease. In 2006 I finally was diagnosed with Crohn's due the 3rd colonoscopy. Inflammation on the part of intestines where small is connected to large became very high what caused a huge pain while food was going through. My weight was only 48 kg. (I am not a small woman, 166 cm, and my average weight was 64 kg). In September, 2006 I had an operation when above mentioned part was removed. during operation surgeon noticed that my small intestines are really short only 2.35 m when usually they are about 5 m. Maybe this fact made some impact and was one of the reasons of my disease. After two weeks I had an abscess and was operated second time. The recovery after second operation was very hard and I was actually dying. Thank you for my mother who stayed with me during that period 24/7. I had 5 types of antibiotics to drink and injected to kill abscess. I have left hospital after two month and with the weight of 44 kg together with shoes and bathrobe :)) and not a pretty big scar through all the belly. The nutritionist assumed that if things will go well I will get back about 2,5 kg each month. For the first month I got back 10 kg! I was cooking the breakfast, ate it, and starting to prepare the next meal and so on. Now I am 65-67kg, I still have diarrhoea almost all the time (14 years in total) but my blood test is quite good and I feel much better than before operations. I still have cramps time to time but it always include two things: stress + food what is difficult to digest. It is very painful! I am going to acupuncture from July 2008, I started with 4 times a month and later was going twice a month (going at present and planning to do this for all my future ). I believe it helps me, even I do not feel any big improvement (but I have to admit, that now I have some days without diarrhoea), but I believe it helps me to stay quite stable. Also during my illness, I found my own way of diet. That I am not tolerant for milk products, but for some reason I can eat butter and not much of hard cheese (only not melted); juice, fizzy drinks, coffee, smoked meat, fast food are out of my diet at all for many years. I am not drinking (maybe one glass of red wine in 2-3 months), no smoking of course :))
If you have any questions I will be happy to answer :))
 
Last edited:

rygon

Moderator
Welocme to the forum, sounds like youve been through quite a bit. Glad its a little bit better though. Never tried acupuncture but i guess if it helps with the stress then it will be good
 

Crohn's 35

Inactive Account
:welcome:!!! Yay, you made it! :banana: So glad you are here but my you have been through alot! I have had 2 resections and have 2ft in total taken out. I used to have a lot of diaheah but not so much now. If I eat some risky foods or protein I use digestive enzymes. If you have alot of Diahreah, get your doctor to give you a prescription for Questran (cholestyramine) and it used to help me alot. The Ileum, the area cut out is where we absorb nutrients and vitamins, and we do have to be careful what we eat or avoid them. I can eat Hard Cheese, cheddar only but others, no way. I use rice milk too. What country are you from? Lots of times that helps us help you too. Welcome aboard!
 
Hi Tantija! I was also wondering where you are from.

I'm so glad you found us! This is the first and only forum I am on too, but it has helped me so much! Welcome to the family!
 
Hey Tantija

Just wanted to welcome you to the forum. It's a great place for information and support :)
Have a look around :)

Paula
x
 

xJillx

Your Story Forum Monitor
Welcome Tantija! Boy, you have been through so much! But I am so happy you are doing pretty well lately. Are you taking any maintenance medication? Also, as Pen suggested, you may want to see if your doctor can give you something to help with the D. I look forward to seeing you around!
 
Welcome Tanjita! You have been through a lot! I'm glad you say you feel better since before the operation. Don't worry about your english not being fluent, I understood it all very easily!
Good luck with the future!
 

ameslouise

Moderator
Hi Tantija and welcome!

Sounds like you have been thru a lot but feeling much better! So do I read correctly that you are not on any meds?? Good for you! Hope you can continue to feel well for a long time!

- Amy
 
Location
London,
Dear all
Thank you very much for so warm welcoming!
Ethnically I am Russian but from Lithuania. I know it sounds quite complicated :))
I had two month of the prednisone before operation and 2 month of Mesalazine and azathioprine after. The prednisone have been terminated by the doctor because I had an abscess, also there is a possibility that abscess started because of prednisone (not my opinion - doctors). Later I have requested to stop azathioprine for me as do not want to risk my health with immunodepressants.
After all these years of illness I came to my own understanding of my disease what is more closer to the Eastern medicine than to Western. Western medicine is just trying to treat the symptoms but not the reason of the disease. I think that Crohn's is more psychosomatic disease. This is just my opinion, please do not think that I am trying to push it. Also, I can see that sometimes doctors are just trying different medication to see what result will be or sometimes just following the instruction that for this "disease" you have to prescribe this "medication". In my opinion our disease is more individual and need individual treatment. I am sorry I do not want to sound bossy this is just my opinion.
Thank you. Tatiana.
 

ameslouise

Moderator
Hi Tatiana (beautiful name!) -

There are many, many people who have been able to acheieve and remain in remission thru non-medicinal methods - either diet or supplements/vitamins or a mix of both. A big lifestyle change. For some it works, for others it doesn't.

I wish you well in being able to say off of meds. I wish I had been able to acheieve remission either with or without meds, but neither traditional or alternative therapies worked for me!

You can upload your avatar (picture under your name) by going to your profile.

Keep us posted on your progress! - Amy
 
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