Narrowing of the termonal ileum?
Posted , 7 users are following.
Hi All,
I seem to feel myself writing on here a lot - but find it very helpful hearing from people that have experience with Crohn's.
I was diagnosed not long ago and have just had my MRI results back which explain that there is mural thickening associated with narrowing and mural enhancement in the terminal ileum. The affected area is approx 5cm. My follow up with my specialist isn't until January but I am driving myself insane with worry that I may need surgery.
Does anyone know what narrowing is? Does it mean a stricture or obstruction and does this need to be removed? I've been on Prednisolone for almost 9 weeks now and my CRP and inflammation levels are within the normal range, but i still get lots of pain - which I'm guessing is because of this narrowed section?
If anyone has any advice or may be able to answer this - I would really appreciate it.
Thank you for reading
Fran
0 likes, 17 replies
Loudnoises fran54405
Posted
Sorry to hear you not feeling well.
A narrowing is basically where the bowel wall becomes thicker. ? Whether due to inflammation or a structure.
It depends how narrow it is and how much pain you in or if you suffering any obstructive symptoms if they operate or not.
I have just recovered from surgery following a 7cm stricture and 2x 2cm ones.
I Am now back at work and in less pain so was worth the few weeks of pain.
Hope you feel better soon
Cathy
fran54405 Loudnoises
Posted
Hi Cathy,
Thank you so much for your response.
I'm really sorry to hear that you had to have surgery, but I'm pleased that you are now back at work and hopefully feeling much better.
I haven't at this stage been told how narrow the area is, but I'm sure I will find out in my follow up. It's all just a big shock and a bit scarey and I've never had to have an operation before so I'm petrified I might have to.
I really hope you continue to have good health and thanks again for replying
Take care
Fran
HellyE fran54405
Posted
Hi Fran,
This sounds all very familiar. I was finally diagnosed about 3 years ago following MRI scan which showed narrowings in terminal Ileum, they also hadn't been able to get beyond this point with colonoscopy as it was too narrow.
For me the narrowing did mean strictures and resulted in partial obstructions which caused immnese pain. I did find that buscopan & sleep would relax my body enough for the obstruction to pass & pain be relieved. I followed a low residue diet for over 18months & the bouts of pain became less frequent.
I took no meds at all & my inflammatory markers were generally OK.
A year ago I became suddenly ill with microperforation/obstruction of stricture & did end up having surgery but as a result having 70cm of bowel removed I now have no crohns affected bowel so the outcome for me has been OK. Yes I do have some issues following on from the surgery but I know people with far worse problems. I'd say I'm better now than I was before the surgery.
If I was in a similar state again I wouldn't rush to have surgery. I'd follow the low residue diet but try to tweak it to be slightly healthier eg eat oats, brown bread (not granary) but avoid red meat.
Good luck with the decisions & working out what to do, it's not easy
thi20955 HellyE
Posted
Hi HellyE,
Thanks for sharing. I just wonder do you have to put a bag for your waste? which part of your intestine had removed? I too have Crohn diseases and I too dont take any medication I just eat yogurt two times a day mixing with probiotic. I dont smoke or drink. I am not eating fresh vege much all is cook. Stress does contributing to diseases but I think mostly the bleach in the food caused the Crohn's diseases. I took entocort for a week then gave up for it gave me more pain and more frequent diarhear. I dont understand residue low diet means. I am glad you are in better dondition now.
HellyE thi20955
Posted
No I never needed a bag. I had 70 cm removed including terminal ileum & first bit of the cecum which is the bit after the ileocecal valve.
Low residue diet just means you avoid food with too much fibre or are difficult to digest. Fruit & veg all easier to digest when cooked but avoid thiings like sweetcorn & beans. If you look it up you'll find plenty more info.
fran54405 HellyE
Posted
Hey,
Thank you so much for taking the time to write to me. I'm so sorry to hear that you became very ill and ended up having surgery. I hope you continue to stay well and I'm pleased that you are better now than you were before the surgery.
Thanks for your advice about the low residue diet. I have actually been following this for the last 3-4 months. I'm very limited on what I can eat due to a gluten and dairy intolerance as well and would love to start eating fresh fruit and nuts again but think it's probably wise to avoid them considering I have this narrowing.
I really appreciate your advise and wish you all the best
thi20955 HellyE
Posted
anna64644 fran54405
Posted
Hi Fran, this is what I had, inflammation, not stricture. Mine eventually led to an abscess which saw my CPR soar above 250. I was admitted to hospital for intravenous steroids and hydration for three days and it all settled down. Unfortunately I was getting a lot of inflammation so it was decided to operate whereby 7cm was removed. Inflammation causes scarring and fibrous tissue which is called a stricture and it can lead to a blockage of the bowel. Your Gastroenterologist will decide if you need an op. I guess if like me you are getting regular flare-ups it is better to remove the diseased section. I have been on Imuran for 3 years since the op, now just on a maintenance dose which will be reviewed early next year after a follow up MRI. Apart from bile salts diarrhoea I have been in remission. I guess if you are not getting any relief between bouts of pain your gastroenterologist will need to make a decision, I found codeine based painkillers relieved the pain. I am also on B12 and Vit D as I don't absorb these from food due to where my Crohn's is, interestingly I was found deficient of these long before any Crohn's symptoms appeared 10 years's ago. I also used to bring up undigested food occasionally which may have been due to narrowing before diagnosis. Hope you are feeling better soon, Anna
fran54405 anna64644
Posted
Hi Anna,
Thank you for your reply.
I'm so sorry to hear what an awful time you've had, Crohn's is such a horrible thing! I really hope things improve for you and you continue to stay in remission.
I'm sure my GI will tell me more in my follow up, I'm just unsure as to what point you are in remission, but its all quite new to me so I'm sure I will learn a lot more over the years with my own body and when I feel better etc.
Thank you for your advice about the codeine. I tend to have these at home for headaches etc so I have them encase my pain gets too much.
Take care and I hope you feel better
anna64644 fran54405
Posted
Hi again Fran, blood tests tell you if your Crohn's is active, Inflammation markers, whether you are symptom free etc and my bloods have all been good since the op and I've had none of the pain I used to have. Yours sounds as if It is still active given your pain although the steroids are keeping it manageable. It is miserable and I wish I could give you more advice but it isn't a one size fits all disease. I've tried gluten free, lactose free, wheat free, taken yakult daily, followed FODMAP, avoided known irritants such as dried fruit, grains with little success, I don't smoke and drink very occasionally. I'm baffled as to how it started in the first place although I understand it is an autoimmune disease or newer research suggests it may start from bacteria in the gut. Write down things for your GI, however minor, it all helps to build a picture of your Crohn's. Good luck! Anna
fran54405 anna64644
Posted
Hi Anna,
Thank you so much, you've been so helpful. It really is so debilitating. I've quit smoking since my diagnosis, I rarely ever drink, and I've completely changed my whole diet but it puzzles me as so why the pain just won't go. It's ten times better than it was before my diagnosis but like you say, everyone is different so it's impossible to know what's going to happen next. I really appreciate all your advice and will definitely write things down to speak to my GI about. Take care
stacey06991 fran54405
Posted
Hi fran,
I got diagnosed with crohns when I was 29 in the exact same area 2 years ago.. I was on steroids for 8 months. I had ulcers and 10cm of thickness. I tried to take mercapterpurine and the one beginning with A but it made me ill! I suffered no pain just bloated stomach from the thickness and digestion problems. Anyway the point I want to tell you!!!! I just had surgery because I refused to take meds for the last year and 10 months. They wanted to give me imflax anyhow 5 different surgeons have told me my crohns will never come back!! Now I was sceptical at first.... but in two years my 10cm thickness didn't get worse or better... so I'm thinking they are right. Do you smoke by any chance?
Stacey
fran54405 stacey06991
Posted
Hi Stacey,
Thank so much for your message. I'm really sorry to hear what you have been through. What surgery have you had? I hope things get better for you now. Are you still not on medication?
I did smoke for about 6 years but gave up almost 10 weeks ago - the day I had my diagnosis. Trying really hard not to go back to it as I know how bad it is in general - but definitely with inflammation. Hopefully I won't have issues with the 5cm narrowing I have. I still have pain every day and am due to come off my steroids on Monday after 10 weeks. I'm not quite on my full dose of azathioprine yet either so hopefully that may help.
I hope you are recovering well from your surgery
stacey06991 fran54405
Posted
I've had a resection of my small bowel. Now my surgeon said medicine would never have fixed the problem. I had key hole... so minimal scars. They said get on with your life. I previously smoked for about 12 years, they asked if I smoked. I gave up a year ago have a vapour pen now.
Book a meeting with the surgeon find out all your options! They've said it will never come back... it didn't grow in 2 years... I've got to be tested in 12 weeks to make sure.
stacey06991 fran54405
Posted
My consultant said I needed medicine and the surgeon said I needed surgery.
Just remember all consultants are trained in medicine and believe soley in it!
I feel so much better and I'm only on week 2 after my operation.
fran54405 stacey06991
Posted
Hi Stacey,
Thank you so much for your advice. My follow up with my specialist has been cancelled and I have now been added to a waiting list which is likely to be March before I get an appointment which is very frustrating but I will see how I go.
I'm really pleased you are feeling so much better after your op and hope that you continue to stay in good health. Fingers crossed we can both stay off the cigarettes too. It's only been 10 weeks for me so far but I'm determined to keep going