Aj recently diagnosed

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AJW

Joined
Apr 13, 2012
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5
aj recently diagnosed

After many months of unbearable stomach pain which started in june 2011 and many trips to my docs who told me i had ibs or maybe acid reflux would you believe!! I finally couldnt stand it anymore and i insisted they scan me or do something as i was certain there was something very wrong. Finally i had an ultrasound scan which showed a mass in my bowel, the docs then moved pretty quickly and got me an mri scan which showed what they thought was a malignant tumour, i was told this news a week before xmas last year. I had already lost my mum in april to ovarian cancer and then my uncle to kidney cancer so my family had already been through an awful year and then to be told this almost finished me off.

I saw the surgeon beginning of jan and was booked in for a rightside hemicolectomy jan 13th. Surgery went well and the surgeon came to see me straight away after to basically tell me that they were completely baffled because they had found no evidence of a tumour just a huge amount of inflammation. I was so relieved that it was not life threatening and when they finally told me i had crohns it was such a huge relief to finally know what it was and that it was managable.

My recovery has been slow almost 9 weeks down the line i was still in so much pain, not surgery related but infact they told me that the surgery had triggered off my crohns in another part so i was getting pain now in my navel, whereas before it was just my rightside. I have yet to see a gastro specialist typical british nhs cannot see me until end of may so i have been waiting in limbo really with no specialist advise, im just going on the internet and talking to the nacc members to get advise etc. I have also been reading a very good book about self healing of crohns and colitus which has been a really good read, i would very much like to heal through diet if this is possible, but at the moment i have been advised to start taking pentasa to calm things down and see how things go, im hoping i dont have to stay on this for to long.
I have been on an elimination diet and have stopped all dairy wheat and sugar which has helped a lot, i have up and down days and not your typical crohns symptons, no weight loss, no diarrhoea, no bleeding, but i do get bad stomach pain and bloating, and sometimes constipation. I would love to hear about other peoples experiences and to chat about how other people are coping and living with this disease
 
Welcome

I do not have chron's. I had colon cancer. Colon was removed and after a total blockage 16 years later i got a ilieostomy. The things that I did not drink or eat when my colon was removed was no gas cooldrinks, beans, nuts, bread. Rye bread is better. Oh and cauliflower and also some fruits gave me a lot of gass. The gass really was very painful. When I got pain I always run for my warmwater bag! That is my number one. It seams like something about the heat helps for the pain. Then my docter gave me Scopex Co tabs. That also helped for the pain. Now that I have a stoma, I do eat some food to make my stool a little less running! Banana and marsmallows and jelly sweats! So I think (I think) those are you must be carefull of! Without my colon I also found that food with soya in also gave me a lot of gass. Have a wonderfull evening. Lots of warm love here from South Africa.:redface::wink:
 
Hello and welcome to the forum :bigwave: Sorry to hear that you are still struggling with pain and symptoms, could you perhaps get in contact with your GP at all to see if they can perhaps either help with some meds to help or to get the GI appt brought forward?

It is not unusual for someone with crohns to have constipation instead of diarrhoea, one thing you will find out here is that we are all different in how this disease behaves. With regards to diet if you have not already done so then do have a wander over to our diet and sups forum to get further info on different things to try (maybe even a liquid only diet for while) that may help ease things. The pentesa is a drug that is usually used in mild cases once the tum has calmed down to keep the inflammation at bay, I am not sure what use it will be if you currently have active disease/inflammation still going on.

I really do hope that you can be feeling better soon, please keep us updated on how you are getting on.

AB
xx
 
Hi AJW and welcome to the forum :)

What a rollercoaster you've been on. Let me see if I get the right though. You don't get to see a GI until later in May? All this time you haven't been medicated or anything like that? If so, good grief!

In the mean time, you may want to look into enteral nutrition. It can actually put you in remission or at least calm things down while you wait for the GI.

We're here for you :)
 
I've been trying to stay away from Diary and strong drugs. I also try to eat less if I know I'm going out. I will eat the same stuff that I know wont have me going to the bathroom before going out. I have Ulcerative Colitis and take Asacol & Probiotics along with folic acid for my blood. If I ever need to take other drugs for other stuff I deal with I read up and make sure there's no known history of side effects with Colitis. I may still take that chance. Been trying my best to avoid stress.
I found out i had colitis two weeks after one of my brothers died. That almost ended me too. Awful thing to go though!
 
hi there, many thanks for your reply, my doc has already ried writing to the gastro dept to request an earlier appt, but unfortunately no go, i have to wait!!
Do you also have crohns? how long since being diagnosed and have you had any ops. Thanks for the advise about the diet and sups forum, i will go on and have a look and let you know how im getting on
take care
best wishes
amanda
 
Hi Amanda. Sorry for the late reply. But on the farm I live we do not always have a strong signal. Then I cannot go on internet! No I do not have chrons. I had cancer on 34. My colon was removed. Then I there was some foods I could not eat. Last year I got a blockage and 23cm of my small intestine was removed and I got a stoma. The reason I signed up on this forum is because there are people who also got stoma's. But I think the main reason is only to talk to people who also experience pain. The stoma was not a succes story, so I am daily in pain. I use painkillers now which makes it more tolerable, but there are many days that it is unbearable. Hope my spelling is correct. My homelanguage is Afrikaans, but I do understand English. Could you explain to me more about chron's? Is it like cramps? And for what op are you waiting? Can they heal you? All my love from a very cold Paarl, South Africa!
 
Hi Amanda, welcome here. I am undiagnosed, won't see a gastro till I don't know when (wa sjust referred). It sucks you have to wait till the end of May. Let us knwo how the appt goes.
 

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