Not the 'typical' case

In October I was taken into hospital with a suspected appendicitis. However, after 5 hours of surgery I was told I had part of my small and large intestine removed due to severe inflammation and infection. This was quite a shock to me as I had never suffered with digestive issues before. About a month before my operation I occasionally had intense pains high up in my stomach after I ate but I thought this would pass. The surgeons suspected Crohn's disease and my histology also indicated Crohn's. However, I have not been officially diagnosed as I haven't received my appointment with a gastroenterologist (3 months later). Since my operation, I have had a constant upset stomach going to the toilet up to 30 times a day and I am tired all the time (I am due to start Vitamin B injections) and hopefully this helps. My doctor is adamant I have Crohn's disease and that I have had it for a very long time as I have suffered from Sacroiliitis since I was 16 (I am 21 now) he believes they it is linked to Crohn's disease, but I am not the 'typical' case, as I have never suffered any digestive issues.

My concern is that this is going to happen all over again because I was so unaware that anything was going on before. As I constantly have an upset stomach I don't know what I should or shouldn't eat and whether my bowel is going bad again? My life has changed so much since my operation. I'm hoping that after I receive an appointment I get more info and some medication to get me back on track.

I would be grateful for any replies if somebody has been in a similar situation. Any advice or info will be hugely appreciated! Thank you! x

Hey Courtney

I'm afraid I don't really have any advice, but just came across your post and really wanted to reply as I am in a very similar situation!

I'd been having some pains after eating for a couple of weeks, really high up in in my stomach and radiating up into my shoulder blades, kind of indigestion-y and nothing major so I wasn't particular worried. The pains were gradually getting worse so I saw my GP, who referred me for blood tests (came back normal) and an ultrasound, which I was due to have the first week in January.

Over the next 10 days or so, the pain got even worse and on the evening of 18th December, my stomach swelled up like I was 9 months pregnant! That night I began having the worst pain in my abdomen - a stabbing pain really low down to one side. I was shivering and sweating and just generally felt awful.

Went straight to A&E in the early morning on the 19th. To cut a long story short, the doctors did a load of different tests and I was diagnosed with Crohn's disease. The area around my ileum was a total mess. Due to the inflammation and ulcers or whatever in there, I had a stricture. I also had an abscess and a fistula between my small and large intestine. The stabbing pain was my bowel rupturing, which had resulted in me having the early stages of peritonitis.

The doctors were at a total loss as to how I can have had next to no symptoms when all this was going on in my body. Other than the upper stomach pains I'd started with recently, I've never had any pain, I'm never sick, I can count the number of times I've had diarrhoea in my life on one hand. I'm a healthy weight, no deficiencies, tiredness etc.

I had emergency surgery on Christmas Eve to remove the affected part of my insides - the last part of my small intestine and first part of my large intestine, about 20cm in total. My appendix obviously had to go too! All indications before my surgery said that it would have to be done as open surgery and that I would need a temporary stoma afterwards. Thankfully, my amazing NHS surgeon managed to complete the surgery keyhole and also join me back together. I'm so incredibly thankful for that, think it must've been a Christmas miracle or something!

Afterwards, I didn't go to the loo for four days, then had diarrhoea for two days, then been totally back to normal ever since.

I've got to go back to see the gastroenterologist next month to review how we will deal with the Crohn's going forward. From the CT scans, it seemed that the Crohn's was isolated in the section that was removed, but they want to put the camera through my system and take biopsies to double check.

I think I'm just really struggling to get my head around everything. I know how incredibly lucky I am to have never had any symptoms, but at the same time it terrifies me that my insides were in such a state and I didn't know anything about it until it ruptured.

It's brilliant that there are so many online resources and support forums for Crohn's, but I'm finding it almost impossible to relate to anything I read.

I just feel really overwhelmed by it all at the minute and think I'm still in shock about everything that's happened over the past month, it just sort of came out of nowhere which is the scariest thing for me.

Sorry Courtney to have gone on for so long, and also sorry that I can't give you any advice or experience. It's just that your 'story' is the only one I've found so far that sounded anything like mine, and I just wanted to let you know you're not the only one!

Hello and welcome to the forum. I am sorry both of you had to go thru such traumatic situation in order to be Dx with Crohn's disease. I have read about similar stories in this forum mostly with kids. I am almost sure that both of you will be prescribed medicines to maintain or achieve remission. My daughter is mostly asymptomatic and we found out after one year with no symptoms that even on medication her crohn's progressed rapidly. Now we know we have to be aware and get tested. I will suggest that you visit your GI regularly and get blood tested. There are some tests that will give clues if something is not right, like SED rate and faecal calprotectin. Also colo/endoscopies. Courtney make an appointment with a rehumatologist if you are not already seeing one. Crohn's and joint problems can go hand in hand in some cases.There are medicines than can treat both at the same time like biologics.
You may want to visit the Surgery forum. This is just my opinion, I am not a doctor, just a mom. Sending hugs and support.

Have to second what araceli says you just have to be more vigilant about testing. Labs haven't really been reliable indicator for my son as they are always in the normal range but over time we have figured out what is normal for him and what is high even though they are within the normal range, I just plug the results into a excel spreadsheet and based on other testing done at the time we knew when inflammation is present and were able to match what his lab results were at that time. For example normal range for ESR for him is 6-7 whereas when inflammation is present it is 9-13 (normal range 0-15) Fecal Calprotectin has been fairly reliable for us and MRE imaging.

Thank you both so much for your responses. It's good to know that there is support out there on forums like this!

As you say, from the little bit of research I've done, I've only come across stories of children being this asymptomatic. I've somehow made it to 30!

I guess I might feel better once I've seen the gastroenterologist and have more of an idea of what the plan is. As well as feeling a bit shell-shocked, I think it's the feeling of having no control at the minute that I'm finding hard.

I think you're right about the medication. The thought of taking drugs for the rest of my life for a disease I don't even know I have doesn't sit comfortably with me - I don't even like taking paracetomol if I can help it! - but if that's what I need to do to make sure this doesn't happen again, of course it's a no-brainer!

I'll make sure part of the plan with my consultant is regular testing, thank you again for your advice.

Thank you so much for your reply DC2 (sorry I can't find your name! New to this). I am sorry to hear you have had such a rough time especially so close to Christmas! It is good to hear from somebody in such a similar situation to myself. I can pretty much relate to everything you have wrote! I am glad to hear you are feeling better now! I have been suffering with diarrhea ever since my op but I have finally received an appointment with a gastroenterologist for Thursday this week which I am guessing they will also do tests to officially diagnose me etc and hopefully give me some medication to get things back to normal. Wishing you all the best, Courtney x

Welcome to the community

When they removed part of your small intestine and large intestine, they very likely also removed what is called the ileocecal valve. This is a little valve between the large and small intestine that, when removed, can often cause people to experience exactly what you are: lots and lots of diarrhea. I suggest giving this thread a read: http://www.crohnsforum.com/showthread.php?t=13856 BUT please be sure to consult with your doctor before doing any supplementation

Hi David

Thanks so much for your post. I had both my surgical review and gastroenterology appointment last week. My gastroenterologist gave me Colestyramine sachets to take daily and they are brilliant so far. Apparently it is something to do with bile salts absorption?! I am still very uneducated about my operation and Crohn's disease in all honesty so I have a lot of research to do!

Yep, they act the same when the psyllium husks work in the thread I linked. I'm glad that was the issue and you're feeling better