Not the xmas gift I wanted

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fi-ecosse

Joined
Jan 1, 2014
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Hi

I got diagnosed with Crohns just before xmas. Initially I took ill with a suspected appendicitis start of Nov13. Thereafter hospital consultant decided I was suffering from a viral illness and was discharged. I didnt feel great and knew I wasnt myself so I used my private medical to see a GI who again agreed it was viral but asked me to do a stool sample. So two and a bit weeks later after I chased up the GI who apologised for not getting back to me sooner and just as I had decided no news was good news he confirmed that the calprotein test came back positive and wanted me in for a colonoscopy ASAP.
So 4 days later I do the colonoscopy and the GI confirms where I had abdominal pain is actually narrowing of large intestine where it meets small intestine and that he wasnt able to get into SI for a look and confirms I most certainly have Crohns.

So I have had to go 2 weeks through xmas and new year stressing out about the implications and changes it will mean to my life.

GI confirmed this friday he will have results of all my biopsies and that he wants to arrange for a MRI and to see other specialists? Help ... what is going to happen next? I am really active and this spell of illness since Nov is the most laid low and inactive I have felt. Ive spent xmas over indulging with stress my stomach has certainly paid for it.

Any advice for going forward would be really appreciated.
 
Sorry to hear of your troubles, especially over the holidays . Start by bugging the heck out of your doctors for information. And make sure you have the right doctors. Ask him how many Crohns patients he has. (mine has 200) You have to exercise you brain here, and learn as much as you can about Crohns. Stress is a factor for me so try anything that will help you relax. Change your diet to soft foods until you get this under control,,, and you will get it under control. This site has lots of info on diet. Hang in there and keep us posted on your progress.
 
Sorry about your diagnosis. It's really horrible when doctors don't do their job and let you know your results. Especially when something is wrong!

I assume the dr ordered an MRI to see the area of small intestine they couldn't access. Depending on the imaging they will likely determine whether medication or surgery is the next step.
 
Thought I'd reply to this thread because while I was diagnosed in 2012, the OP and I have one thing coincidentally in common, a Christmas present we didn't want. On Christmas Day this year I had the pleasure of experiencing my first nasty, full on, disabling Crohn's flare. Merry Christmas to me too!

As i said above, I was diagnosed in late 2012, although I obviously had it longer than that and just didn't know it. As soon as I got the diagnosis I was very proactive about caring for myself. I saw a nutritionist who works with Crohn's patients and set up a specialized diet plan, took my meds religiously, found a great probiotic, and stayed active. And for most part since my diagnosis, other than a few minor hiccups, I felt pretty good. I wasn't going to let Crohn's get me down or stop me from having a life.

That all changed Christmas Day this year. I woke up Christmas morning and immediately started vomiting, then came the non stop BMs. For a while I was on the toilet with a bowl in my lap with it coming out both ends. It felt like my insides were wrenching out of me. After a few hours of that, when it finally stopped the pain was horrible, it was as if my whole body was cramping up. I was taken into urgent care and put on IV fluids and given prednisone. That was my Christmas. Finally, almost a week later I'm almost back to "normal."

What I'm dealing with now is what feels like PTSD. I thought I had it under control, I though I could live with Crohn's no problem, I wasn't going to let it stop me. But after that hideous flare, which I was lucky enough to have experienced until now, I'm afraid to eat or do much of anything. I just got a new job, a job I had wanted for a while and is so much better than the job I've had for the last few years. But I haven't even started that new job yet, and I'm afraid I'll have another nasty flare and not have the chance to prove to them that they're choice to hire me was a good choice. I keep thinking about it and every time I feel a pain or a cramp I start to panic. I'm not as strong and capable of dealing with this as I thought I was.
 
I also hav a narrowing in my small bowel and waiting for an MRI scan to confirm if I need surgery! I'm struggling to eat or drink without feeling sick and my tummy is constantly bloated and painful but as I've not got full blockage I'm not a priority case! It is soo frustrating waiting for the next steps especially when previous and current medication isn't working 😢 I'm struggling with depression aswell at the moment just not coping with how long I've been feeling soo ill! I really hope they sort you out soon and I've found this forum to be a massive comfort that I'm not alone in the suffering of this horrible disease! ! All the best keep us informed of progress x
 
thanks for all your replies

I think what was most difficult was having the colonoscopy, being told I have Crohn's and being sent away for just over two and a bit weeks to come back and then discuss arranging the MRi, meds etc.

Ive done a lot of reading in that time and have a good list of questions.

However its been pretty miserable over the festive period. My husband, work and a few friends know but tbh as I dont feel that I know enough about the disease or whats going to be happening until i get the further tests etc I havent even told family or wider network of people as I cant cope with the barrage of questions or sympathy looks. My husband seems to think I'll be ok and possibly thinks Im feeling a bit OTT on it...if only her knew how my stomach was really feeling, putting on a brave face for your two kids over xmas hasnt been easy. Especially when your 10 year says for 2014 mummy Im sure you will be better and no more hospitals.

I am generally a very active person and Ive decided even with the lethargy of late I cant let this disease beat me.

My husband says I should feel better in the knowledge that from flare to diagnosis was only 6 weeks as I took the option to go private and push for further tests as I knew myself it wasnt just a virus.

Im sure come Friday morning once I have seen GI I will be having another meltdown and asking for more advice.

fi
 
The thing to remember here is you will be o.k.its a ball ache of a condition but it can and does eventually settle down try not to stress about it ,doesn't,t help,forget about the delay by your doctors ,but don,t be shy about pushing them for information,your the boss!you can help things along lifestyle wise,if you smoke,stop!diet wise there's a few common threads food wise that link us all salad,raw veggies,greasy oily food generally not brilliant try to keep a note of triggers and steer clear.help wise if your on medication I found being regimented about taking medication helped,common theme is exercise seems to help don,t know why just does,definitely helps me.
Above all it gets better.good luck
 
I have 2 children also and was in hospital with my flare for 5 days b4 Xmas! I came out feeling the same as I went in and it's been a real struggle keeping that brave face painted on! My husband went back to work today which I was terrified about but luckily my mom came round to help as I'm soo tired I keep falling to sleep
Good luck with your tests hope your flare settles soon xxx
 
As I said above, I've been dealing with my Crohn's diagnosis since 2012. When I was first diagnosed I put on a brave face, wore my Crohn's like a badge of honor really. I had some bad days, but I wasn't going to let it stop me. That was my attitude for the first year after my diagnosis.

But then on Christmas Day this year I ended up in urgent care with an IV and being given steroids as I felt like my insides were wrenching out of me. In the whole year or so since my diagnosis I had never felt or experienced anything like it. And needless to say the biggest symptom I am experiencing from that episode is the psychological effects. Here I had been brave for so long, not letting my diagnosis get me down, then one day I was given a rude awakening to what an unforgiving disease Crohn's can be. And suddenly I started to question everything. I just got a great new job, something I've wanted for years and worked so hard for, but will Crohn's get in the way of me making a good impression there? What if I have another episode like I did over Christmas after I start this job, what then? Is my Crohn's getting worse now that I had that episode? All these questions, and I've been so scared and worried.

Anyway, I don't say that to scare anyone, mostly I just post it because I know others here can relate to that. I'm sure many of you know exactly what that fear feels like. And it is a comfort knowing you are not alone, knowing you can go somewhere and be scared and get support. The truth is though, I don't have anyway of knowing what Crohn's will do to me in the future. All I know is the here and now. All I can do is try and take care of myself right now and keep going with my life. Am I still scared? You bet, but I can't let it paralyze me because what kind of life is that? I've got to make the most of what I have now and just deal with the future if and when it happens. I have to, I'll never get through this if I don't.

Anyway, thanks for letting me ramble.
 
I like you all have had some pretty awful experiences I,d happily have done without I try to remember this mantra ,don,t think about it,don,t pick at it,forget it.good luck
 
Oh my, can I relate. I am a writer and my first book was accepted by a publishing company just as I was diagnosed with Crohn's. It was/is a 3 book series. It took me two years to write the second book which is now with an editor, and I am just a little ways into book 3. Problem is the flares wear me out. Just thinking about writing scares me right now as I wait on approval for Remicade. I wanted this for years and bam, was I broadsided. I am scared there is nothing left in me. I am scared I will never find real remission. I try to remain in the here and now, but it is difficult


Louann Carroll
www.louanncarroll.com
Crohn's survivor and advocate
Trying the natural method that's not working so well right now. I DO NOT recommend this to anyone.
 
So seen GI today .. eventually after he arrived 45mins late for a 8am appointment??

So the position as it stands is that he now doesnt want me to have MRI but submit another 3 stool samples. Is going to prescribe 5 ASA and he will write to my own dr to arrange.

As you can imagine I asked him to rewind and went through my list of questions. I think the fact he knew he was running late the whole consultation felt very rushed and disconnected and importmant info for somebody being told about a new disease was being brushed over.

ME>So biopsies.. where they ok?
GI> Yes, ok didnt show cell activity as expected.
ME>So if it wasnt showing cells how can you be sure it is Crohns? The long and short being I cant have crohns on my medical record as it impacts groups I am associated with?
GI> Ah ok , well maybe instead of the 3 stool samples I will just do the MRI?
ME>Not to pressure you, but I could be doing without a misdiagnosis but equally important is that you say you are sure it is and that it has been caught very early.. therefore what about diet?
GI> Avoid Mushrooms and tomato skin?
ME>Can you refer me to dietician so I can review my diet in a controlled regime so I am not going to make myself feel any worse?

As you can imagine.. it felt like I was pulling teeth .. so again I am now in limbo waiting for him to write to my dr to find out what is happening next.

Im sure most would say I have moved from initial anger phase of last 2 and bit weeks and moved to denial..

So if anybody can offer some positive advice as to what happens next? Do I need to take the above meds? He mentioned being associated to the Aspirin family and also a med that could be taken morning/night and was granuals?

During this time I have been suffering with gut ache and it seemed that today GI kept referring to my movement prior to taking ill in November, had to remind him when I seen him 3 weeks after taking ill I hadnt eaten properly or really anything therefore I couldnt comment ... ah .. frustrated..
 
He,s probably talking about pentasa it breaks into granules,diet wise I wouldn't,t bother about the dietician,keep a food diary general rule of thumb raw and salad veggies bad,oily greasy food bad,oily fish good,basically anything that's over processed is bad for us crohnies if your a smoker try to stop it interferes with the medication,alcohol treat with caution if it's early days and not under control.
I find that if I,m needing veggies good old home soup we'll done or blended invest in a George Foreman grill.
A common thread on here is exercise is good for crohns don,t know why just is there's lots of decent advice on here worth a look around.
You,ll probably have a gi clinic nurse get to know him or her well I,ve found there better,easier to approach than the consultants who can be arragant pricks.
I won, task what groups your talking about would impacted by your condition,if it's work you come under the disability discrimination act uk.so there should be no work related issues for a while.
O.k I,ve ran out of steam just now just remember it gets better.good luck
P.s be cautious with fruit
 
I also was recently diagnosed with crohns recently and im 36 year old male.

My doctors experience has been less than pleasant and have had a inflamed illium for many months now which was shown in colonoscopy as well as MRI.

I'm currently on busidone, probiotics and omeprazole for Barrett's which I also recently diagnosed with.

I'm in pain, the cortisteroids haven't been working and yet doctor wants to talk again about next options.

I wish this pain would go away and I wish for my weight to go back up to where it used to be..
 
Get the MRI! I had severe "gut" pain off and on for several weeks,if not longer,waking up at night,throwing up and feeling like I had food poisoning.I ended up being admitted to emergency.I had x-rays,MRI and a ultrasound.They saw through the MRI and ultrasound I had a section of my small intestine close to being completely blocked.I had immediate,as immediate as paperwork allows,surgery and a resection of my small intestine.I would urge you to have the MRI,more information can't hurt.I was diagnosed 11-13 and can relate to the being a bit freaked out by everything part to this.There is so much to learn.
 
Sorry in addition to colonoscopy, endoscopy and MRI with second opinion from radiologist, high suspicion of Crohns was confirmed.

I had the MRI about a month ago and still showed the same inflammation of illium as did colonoscopy which took place 2 or so months earlier.

The pain and discomfort are in the center/upper area of my stomach and my guts feel scrambled!

I started with prednisone and now am just about done with budesodine? And will be seeing GI in few weeks to discuss next step in the plan?

I talked to GI and he mentioned the pain is radiating from the inflammation, I would have thought by now after month I two of cortisteroids I would be filling better?
 
I also got diagnosed with crohns just b4 Xmas. Have been put on Pentasa tablets 500mg got to take 8 a day. Since taking them keep getting really bad headaches and fill short tempered and on edge fills like anxiety but not sure :( does any else feel like this? I'm wondering if it's the medication. Please help. Thanks
 
warrenh said:
I also got diagnosed with crohns just b4 Xmas. Have been put on Pentasa tablets 500mg got to take 8 a day. Since taking them keep getting really bad headaches and fill short tempered and on edge fills like anxiety but not sure :( does any else feel like this? I'm wondering if it's the medication. Please help. Thanks
Click to expand...

A quick search shows headache as common side effect so am sure on the edge and short tempered also comes with it.

I know cortisteroids are known to cause mood swing but not sure about Pentasa?

Hang in there and let all know your on the meds..
 
Thanks for your reply I really appreciate it. Does the side effects go after a while or will it always b like this till I stop taking it?
 
I,ve been on penatasa a for 18mths or so haven,t noticed anything much in the way of side effects,could the headaches and short fuse not be stress related because your under the weather?
 
Not to sure to sure to be honest seems to come in waves. The headaches are more frequent tho. Maybe just stress. Just fed up with feeling I'll all the time. Should I tell my doctor about this or hope it just passes? I am a bit of a worrier anyway. Perhaps it anxiety causing this and not the meds.
 
Always keep your dr or clinic nurse up to speed.i initially thought pentasa did nothing but it slowly got better still have the odd horrible day but I think that May be my new normal..
 
I got my diagnosis 1 week before Christmas after I waited over 8 months since being hospitalized in April for urgent colonoscopy and endoscopy... I wasn't impressed either... I'm not getting any answers at the moment and that's why I linked up to this...


Sent from my littlefishes
 
hi

so the update is been prescribe Pentasa granules 4g per day and Im going for MRI on Wednesday to check small intestine.

Recent bloods came back all clear but Im still having days of exhaustion. Is this normal? I know reading some of peoples stories that I have been lucky to go from initial flare to diagnosis in 5 weeks.

So what are the next steps? Feel as though I have went from anger to denial back to anger ... I have tried to get back to gym and well my head said yes and my body said no.. struggling to get me head round this ..
 
I suffer with exhaustion too! I think that's one of my worse symptoms along with pain!
I hav a narrowing in my small bowel of about 10cm but waiting for an MRI with a possible op to remove? At the point of wanting it cut out as steroids not working and unfortunately I had neurological reaction to infliximab infusions so they now won't give me humira!
Hope all well on MRI for you keep us posted
Xxx
 
Another day another hospital appointment..

So had MRI on Wednesday and results confirm that my consultant does actually know what he is talking about and no amount of denial on my part is going to change diagnosis.

I have def narrowing about 8cm I think he said.. his treatment plan is to stop taking the pentasa (if I think it isnt helping??) and take the following

Budesonide
Azathioprim

Back in 4 weeks to see if meds are working and recheck bloods..

So is there anything I should be aware of taking these meds?

:ybatty:
 
I've been on azathioprine since July last year and started budesonide just b4 Xmas! Unfortunately nothing is working for me so they are operating to remove my stricture February! Couldn't come sooner!
I haven't had any side effects from budesonide and azathioprine takes about 3 months to start working I thought? U need to be careful in the sun (use cream, hats etc) and stay away from anyone who's ill as it lowers your immune system! Contact your ibd nurse if u feel unwell or different in anyway!
Hope it works for u my stricture is scar tissue now which is hey medication isn't working they think!
K x
 
I had the exact same thing happen this week Fi-ecosse..
Bloods all normal and yet in agonizing pain and not allowed to take anything at the moment...


Sent from my littlefishes
 
Hey buttercup, isn't Crohn's an auto immune disorder anyways? Isn't our immunity shot by having Crohn's or colitis?


Sent from my littlefishes
 

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