Hiya all I'm new to here and also having ibd is also new however I still have unconfirmed Crohn's disease.... It all started is September 2015 when I had sudden pain in my lower right side of abdomen it was tender to the touch more so than pain either it had never been there before... The following day it was worse and I generally didn't feel too well I went to see my gp who sent me to hospital with suspected appendicitis as I had raised temperature... After raised inflammatory markers being that of someone with only a cold and the fact I didn't look ill nor was I deteriorating doctors thought I may have burst cyst on my ovaries and requested an ultrasound... I went home and returned two days later for the scan whilst still in pain. Scan showed ovaries we're fine, appendix was fine however there was some inflammation within the area I was complaining of pain and the lining of bowel wall was thickened... I returned to the surgical assessment unit where a doctor examined me again and suggested an urgent colonoscopy to investigate further and advised that I could possibly have colitis. After a week I had colonoscopy which was clear and the results from biopsies taken were also fine. The following week I was admitted into hospital still in pain and generally felt like I had the flu I felt awful ached all over and my abdomen was so tender. My inflammatory markers had doubled since the previous visit so they started IV antibiotics. Upon examination the consultant felt a lump/mass and questioned whether I had a natural mass growing surrounding my appendix to protect it and the following day a ct scan was carried out. My scan showed the terminal ileum was grossly thickened and the wall enhancing, it also showed a large inflammatory mass within the mesenary at this level as associated with lymphadenopathy. This measured 37 x 34 x 28mm. This suggested a long segment of active small bowel inflammation and the nodal mass in the mesenteric did have little fluid in the centre suggesting liquefaction and most like cause would be Crohn's disease. They referred me to a gastroenterologist which I am still waiting for an appointment to come through however despite my gp writing to the hospital to request an urgent appointment as I was getting worse and worse he ended up trying to get me seen at another hospital quicker. My gp had put me on prednisolone (as suggestive Crohn's) and eventually I was taking 35mg a day along with co amoxiclav antibiotics and tramadol and paracetamol but nothing seemed to be helping and by this time I couldn't walk properly as I couldn't lift my right leg. I was seen on the 16th December 2015 by a gastroenterologist at a different hospital who ran blood tests and my inflammatory markers and gone up even more they admitted me straight away and operated on me the following morning, they removed my ileum and a small part of my large bowel where it had joined and also became inflamed and I had an abscess about the size of a large orange growing within the muscle hence why I couldn't walk which they drained. After being discharged on the 21st December I ended up back in on the 23rd due to an infection and they had to remove some staples to allow the fluid to drain out I was finally discharged on the 30th and having daily visits from district nurses to pack and dress the hole I had been left with due to infection. I have seen the surgeon today for post op follow up where it has been said I have Crohn's disease but other than this episode I have never suffered any common symptoms of Crohn's disease before such as weight loss, diarhea or anything? I'm waiting again now to see a gastroenterologist again about medication to be used to keep symptoms at bay and prevent flare ups but I don't have any symptoms anyway or ever had any common symptoms so would I be right to question whether I have Crohn's disease and whether anything else could have caused the abscess and inflammation of my bowel??? I'm so confused and not entirely convinced about it
I'm so confused....
- Thread starter K8S
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Just because you haven't exhibited outward symptoms doesn't mean you don't have CD.
Alot of members who had active disease located in the small bowel don't have diarrhea some even tend toward constipation.
The maintenance meds arent directed toward symptom treatment but at keeping the bowel healthy by keeping disease or active disease at bay. But by treating the inflammation it eliminates symtoms for those that have them.
You can only remove so much of the small bowel without complications and due to the fact you cant live without the small bowel.
My son has been asymptomatic for a few years yet the simmering inflammation has led to a required surgery. Even before surgery he wasn't exhibiting outward symptoms of CD yet the area removed was severe and at the point of perforation.
Alot of members who had active disease located in the small bowel don't have diarrhea some even tend toward constipation.
The maintenance meds arent directed toward symptom treatment but at keeping the bowel healthy by keeping disease or active disease at bay. But by treating the inflammation it eliminates symtoms for those that have them.
You can only remove so much of the small bowel without complications and due to the fact you cant live without the small bowel.
My son has been asymptomatic for a few years yet the simmering inflammation has led to a required surgery. Even before surgery he wasn't exhibiting outward symptoms of CD yet the area removed was severe and at the point of perforation.
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Thanks for replying I appreciate your comments as people that j have spoken to they tend to know someone with Crohn's disease and all seem as confused as me as regards no symptoms....
My gp suggested it might be a very mild case of ibd but the main problem and pain was being caused by an abscess and he was right it was an abcscess... It's scary though as apparently I have quite a high pain threshold and even the surgeon today said that given the symptoms I presented with none actually reflected just how poorly I was and the mess they found when they opened me up needless to say I was scared upon hearing this....
I'm quite a positive person in general and will deal with whatever becomes of it as I already have but I've always been led to believe that I'd have symptoms surely if I had Crohn's disease, so it really helps knowing that people don't aways have symptoms such as diarrhoea
It's all new to me and I haven't had much information given to me as I still don't necessarily have a diagnosis I've just been told that it's highly likely Crohn's disease after what they removed I'm waiting again now for an appointment so any concerns I have or questions I'm writing them down to take me so hopefully I will understand a lot more...
Thank you for information I really appreciate it
My gp suggested it might be a very mild case of ibd but the main problem and pain was being caused by an abscess and he was right it was an abcscess... It's scary though as apparently I have quite a high pain threshold and even the surgeon today said that given the symptoms I presented with none actually reflected just how poorly I was and the mess they found when they opened me up needless to say I was scared upon hearing this....
I'm quite a positive person in general and will deal with whatever becomes of it as I already have but I've always been led to believe that I'd have symptoms surely if I had Crohn's disease, so it really helps knowing that people don't aways have symptoms such as diarrhoea
It's all new to me and I haven't had much information given to me as I still don't necessarily have a diagnosis I've just been told that it's highly likely Crohn's disease after what they removed I'm waiting again now for an appointment so any concerns I have or questions I'm writing them down to take me so hopefully I will understand a lot more...
Thank you for information I really appreciate it
Hi I keep thinking that as the wall thickening has been seen twice both in ultrasound and ct scan.... All questions I have I'm writing down so I can ask the gastroenterologist when I get an appointment... It's all new to me so it's all a lot to take in when everything's not as clear cut even surgeon said with what I presented with it didn't reflect how poorly I actually was or what a mess they found when they opened me up, apparently I didn't look ill enough....
Thanks for your response
Thanks for replying I appreciate your comments as people that j have spoken to they tend to know someone with Crohn's disease and all seem as confused as me as regards no symptoms....
My gp suggested it might be a very mild case of ibd but the main problem and pain was being caused by an abscess and he was right it was an abcscess... It's scary though as apparently I have quite a high pain threshold and even the surgeon today said that given the symptoms I presented with none actually reflected just how poorly I was and the mess they found when they opened me up needless to say I was scared upon hearing this....
I'm quite a positive person in general and will deal with whatever becomes of it as I already have but I've always been led to believe that I'd have symptoms surely if I had Crohn's disease, so it really helps knowing that people don't aways have symptoms such as diarrhoea
It's all new to me and I haven't had much information given to me as I still don't necessarily have a diagnosis I've just been told that it's highly likely Crohn's disease after what they removed I'm waiting again now for an appointment so any concerns I have or questions I'm writing them down to take me so hopefully I will understand a lot more...
Thank you for information I really appreciate it
Catherine
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Your story is very similar my now 20 year old daughter.
She had ultrasound looking for ovarian cyst which showed thickening of the small bowel. Scan was missed read and she went 6 months without treatment. She has never had any bowel symptoms.
You may want to have your gp look at previous blood results. My daughter can see that Crohn's took 4 years to develop. These was a decrease in hemoglobin and iron levels
She had ultrasound looking for ovarian cyst which showed thickening of the small bowel. Scan was missed read and she went 6 months without treatment. She has never had any bowel symptoms.
You may want to have your gp look at previous blood results. My daughter can see that Crohn's took 4 years to develop. These was a decrease in hemoglobin and iron levels
Ah ok thank you I will speak to my gp also to see whether he can give me any more information.
How is your daughter now is she finally being treated? I do hope so
At least she finally got sorted then.. I've rang my gp who said he hasn't got the results from the hospital so rang the secretary of the consultant I'm waiting now to hear back from them to see if they can tell anymore.. I'm guessing I have CD though as surgeon wouldn't be referring me back to see the GI I just wish someone could tell me yes or no and then look at treatment for it I guess if needed
scottsma
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Hello and welcome to the forum.Your first post was excellent,very descriptive.
I hope you continue to feel better.As suggested your GI may put you on a maintenance medication to keep you flare free.You appear to be upbeat and confident which really helps.Now that you're an official "crohnie" you'll find lots to interest you on the forum.Feel free to ask about stuff you're not sure of,there is always someone who's had the same problems who can help.Also your own story will be of help to others who are new to Crohns.Best wishes.:ghug:
I hope you continue to feel better.As suggested your GI may put you on a maintenance medication to keep you flare free.You appear to be upbeat and confident which really helps.Now that you're an official "crohnie" you'll find lots to interest you on the forum.Feel free to ask about stuff you're not sure of,there is always someone who's had the same problems who can help.Also your own story will be of help to others who are new to Crohns.Best wishes.:ghug:
Thanks for the very warm welcome I really appreciate it.... Although given the detail in my first post may suggest I'm educated I really know very little about Crohn's disease and complications it entails... The details were off my ct scan which I had a copy of due to attending a different hospital.. For the fact I now have an official diagnosis Crohn's has already taken the best part of three months of my life and resulted in me being in hospital over Christmas and not being able to spend it with my 16month old daughter so I'll be dammed if I'm going to mope and let it control me... I accept its now going to be part of my life forever but there is so much more that's precious in my life also and that will take priority... I honestly believe that people deal with things much better if they stay calm and just go with it.... Let's face it stressing about stuff has never changed things before so I can't imagine it starting now... It does concern me that my daughter may also suffer but again there is nothing I can do about it other than keep an eye out for any signs and deal with it when the time comes but for now she's too busy running rings around her mom haha
When they admitted me the bloods that were done were CRP 110, ESR 80 and Haemoglobin 108. I had been on co-amoxiclav since the previous week and prednisolone also 30mg a day at this point as was reducing it by 5mg each week and gp didn't want to increase it again as was going to see gastroenterologist the following week anyway.
When they admitted me the bloods that were done were CRP 110, ESR 80 and Haemoglobin 108. I had been on co-amoxiclav since the previous week and prednisolone also 30mg a day at this point as was reducing it by 5mg each week and gp didn't want to increase it again as was going to see gastroenterologist the following week anyway.
fuzzy butterfly
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K8S sorry for all you are going through. You have a good attitude to this and I am sure that will help you get through and make the best of it.
I tend to deal with what comes when it comes and not worry about what might come till it comes if indeed it does.
Best wishes to you and your daughter. Love n hugs
Mandy
I tend to deal with what comes when it comes and not worry about what might come till it comes if indeed it does.
Best wishes to you and your daughter. Love n hugs
MandyK8S sorry for all you are going through. You have a good attitude to this and I am sure that will help you get through and make the best of it.
I tend to deal with what comes when it comes and not worry about what might come till it comes if indeed it does.
Best wishes to you and your daughter. Love n hugs
Hi Mandy, thanks for your message I do truly believe it helps you cope much better in situations than if your stressed out, upset and all over the place. How long have you been dealing with IBD x
fuzzy butterfly
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Hi your welcome. I must admit i do feel that my not stressing has helped keep me in remission since my surgery.I have been diagnosed for nearly 4yrs, but had symptoms going on for about 3yrs before that. I kept thinking oh it will go away for a year or so before i saw a doctor about it. Then nearly a year and half trying to find out what i had. Ibs was first shout as per usual. It was only when i became really ill that my doc sent me to hospital.thinking that i had pancretitis,that a scan showed crohns.
Tried some meds to get controll which didnt work. So surgery was the next choice. So far so good 2yrs remisson on the 10th of march.
So my advice is keep stress to a minium if you can. Xx
Tried some meds to get controll which didnt work. So surgery was the next choice. So far so good 2yrs remisson on the 10th of march.
So my advice is keep stress to a minium if you can. Xx
My problems only started since I had my little girl sept 14 and had like a twisting feeling in my stomache near enough all the time especially when I ate I found it was much better when I only ate plain pasta and cheese on top so I lived on that for a while lol went to my docs about that around June 15 and they sent me for an ultrasound to check my gallbladder which was fine so they suggested I had a hiatus hernia so gave me omeprazole 20mg and gaviscon I thought possibly ibs then but it was much higher up when I felt it and then in the September I started with lower pain and then it went from there.... Since then however I haven't suffered with this twisting pain so I'm guessing it was all part of it.... I actually consider myself lucky really even having a resection on first flare up and without being actually diagnosed but from what I've read on here and your experience some people can suffer for years and years before any diagnosis is given so for that I'm thankful... My gp is fab though and I honestly don't know what I would have done if he hadn't of been so persistent to get me seen in December he rang me everyday also to see how I was and discuss how the prednisolone were helping so I really do consider myself very lucky given some people's experiences.... Where are you Mandy, are you in the uk? I'm Kate by the way I'm 32 from the west midlands uk xx
fuzzy butterfly
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Im so glad your gp was so good. That can make such a difference. Glad you have had such good care hun. Ye im in Uk in Manchester ..
Xx
Xx
Sorry for delay Mandy yesterday and today has been a manic few days!!!! Yeah I dont know what I'd of done with my gp if he hadn't done what he did.... Very lucky I am! Ah ok a few hours away from me then xx
fuzzy butterfly
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Hi Kate, no problem hun we all have those days, things to do places to go.
Ye not that far away from you, have you ever been to Manchester? I have not been to the Midlands, I have a friend who came from Coventry originally. Is that near where you are?
How are you doing today? good I hope..
Ye not that far away from you, have you ever been to Manchester? I have not been to the Midlands, I have a friend who came from Coventry originally. Is that near where you are?
How are you doing today? good I hope..
Hi Kate, no problem hun we all have those days, things to do places to go.
Ye not that far away from you, have you ever been to Manchester? I have not been to the Midlands, I have a friend who came from Coventry originally. Is that near where you are?
How are you doing today? good I hope..
Morning Mandy yeah I'm ok thank still a bit sore and tender in my tum but guessing that's just post op... Hope your ok and still feeling well! Coventry is about 40 miles from me so not that far really, The only time I have ever been to Manchester is for the airport and with my ex hubby when he used to go to work he was a hgv driver xx
fuzzy butterfly
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Morning Kate, glad you are doing well, ye post op pain can linger, keep on top of the pain and use your painkillers, that's what they are for..
Ah right so not that far from Coventry really. Oh well the airport is a lovely trip to Manchester lol.. I bet you had a great time
. I am doing okay in general, just joint pain n fatigue, but managing it ok ish, thanks.
You keep well hun and if you like you can Pm me if you want to just chat in general. Love n hugs
Ah right so not that far from Coventry really. Oh well the airport is a lovely trip to Manchester lol.. I bet you had a great time
. I am doing okay in general, just joint pain n fatigue, but managing it ok ish, thanks. You keep well hun and if you like you can Pm me if you want to just chat in general. Love n hugs
Yes me too thank you what meds are you on? And did it take long to find the right combination... I do understand that everyone's different so might be different for me
fuzzy butterfly
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Hi Ron, good luck with the appointment, hope you get some answers, best wishes 
Has that combination been working for you and keeping you in remission and if so why would they change it?
Ah ok well I'm certainly wishing you all the best for your appointment and I hope they get it sorted for you and it eases the pain as soon as possible
Let us know how your appointment went will be thinking of you
