Another newbie- Just diagnosed!

Crohn's Disease Forum

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Oct 20, 2010
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Hi Guys,

Well I thought I would join and post my story as I have just been diagnosed with Crohn's disease after years of health problems and am feeling pretty awful at the moment. Finally got out of hospital after 2 weeks and am glad to be home but struggling to understand and come to terms with having this condition.

I am 27 and live in Somerset in the UK with my husband and daughter who is 2 years old. My family are my world but when I am not busy being a mum I work as a children's occupational therapist.

I first started having problems about 5 years ago when I contracted food posioning. I ended up having 3-4 months of bloody diarrhea after this which led to a sigmodoscopy and a diagnosis of colitis. I was put on a course of prednisolone which helped greatly and after that was tapered everything settled down for a bit.

If I am honest I still had times where things weren't right, when I had really bad pain and diarrhea, blood in my stools etc but I was kinda in denial. I got married, we moved house and I was busy establishing my career and didn't want to admit I was ill. I already have epilepsy and the idea of dealing with anything else was just a bit too much.

Then in Dec 2007 I found out I was pregnant, and I have never felt better. During the pregnancy all the symptoms went away and for the 1st 32 weeks I was great. Unfortunately at the end of the pregnancy I developed pre-eclampsea and then suffered a complete placental abruption. This is where the placenta seperates before birth and resulted in me having a massive bleed and losing 7 pints of blood. My daughter was delivered withinh 10 mins of us getting to the hospital by c-sec and we were both very ill afterwards. My husband was warned that neither of us would pull through but amazingly we did.

My recovery was slow and painful, i was very amaemic and on iron tablets 4 times a day. I started getting bowel problems again but put it all down to the trauma of the surgery and the iron tabs etc. As time went on the pain got worse and I was referred to the pain clinic, they felt the pain may be due to the massive amounts of scar tissue from the trauma of the rapid surgery. Took less than 3 mins to get baby out but kinda wrecked my insides. I was still suffering from diarrhea and passing blood, had a low grade fever most of the time and had absolutely no energy for anything. I also developed some eye problems around this time which they now think are linked to the crohns.

Eventually in about august this year I got fed up of living like this and went to see my gp. He was brilliant and ran a load of blood tests that showed all my inflammatory markers were through the roof. He said his gut feeling was to refer me to a GI for a colonoscopy. Had this done about 5 weeks ago and it confirmed crohn's in terminal illeum. Before I could go back to discuss results I had a major flare and got rushed into hospital- CT scan showed Crohns also in ascending colon. I had 10 days of hydrocortisone IV in hospital and have now been discharged on Budesonide. I have been home almost 2 weeks and to be honest am not feeling great, pain is still a big problem particulary when I eat and so I am not really eating. Not due to see consultant til Dec but GP said he wants me to continue on Budesonide and not reduce does next month as planned. It would be really good to know others experiences with this drug? how quickly can I expect it towork? any advice on managing pain? or eating?


The other thing is developed a pleural effusion while in hospital which the doctors said was linked to the crohns and the massive immflamation in my body- anyone have any experience of anything like this? It was pretty scary as I had chest pain and my pulse and sats dropped really low. the fluid is lessening now but it is not something I have ever heard about with crohns.

Sorry for going on so long, I didn't realise it was quite such an epic story. I am really glad to be able to share it with people who understand and hope that I can 'get to know you all' a bit. Any advice greatly appreciated as I am very new to all this and feeling pretty low and scared at the moment,

Thanks for listening.

Charlotte
 
Hi Charlotte and :welcome:

Good to see you here. You have found a great with loads of support and info and you will find many kindred spirits here. I certainly understand the 20/20 vision in hindsight after you get diagnosed, things really start falling into place don't they.

You have certainly had your fair share of scary moments! I can't say I have ever heard of a connection between pleural effusions and Crohns but I don't think anything would surprise me with this disease. There are certainly many EIM's (ExtraIntestional Manifestations) and eye problems are one of them..................

http://www.crohnsforum.com/showthread.php?t=11969&highlight=eye+problems

I don't have any experience with Budesonide but there will be others along that will be able to tell you of their experiences. Are you still taking Iron supplements or any others? With terminal ileum involvement be sure to keep an eye on your B12, Folate and Iron stores (Ferritin) levels. Perhaps when you next have bloods done asked to have them added to your regular blood work.

Have a browse through the food and diet and forum, heaps of info there plus loads of peeps here from the UK that will be able help with the system, docs and meds. Good luck and welcome aboard!

Take care, :)
Dusty
 
Hi Charlotte, welcome!! A friend of mine's wife went through that same situation as you with that placental abruption!! It was touch and go for a day or two with her as well!! I think the Budenoside is also known as Entocort. You could do a search at the top of the page for either and get many results I'm sure. Good luck and stick around!!
 
Hi Charlotte and welcome. Thank you for your story. Inflammation throughout the body with this disease is so common. I know how miserable you have been feeling. Hope your reading some of the posts here lots of good info and great people. I'm not familiar with your meds, but I hope things start getting better for you. Good Luck and hang in there.
 
Welcome MrsWomble. You're sure a trooper! I feel bad for everyone on here that has to wait so long to see their GI. Sounds like you'be been through enough suffering.

This is a good place with lots of helpfull people. Glad you found it.
 
Its very difficult to know what to expect with IBD and if anything its impossible to predict how the disease will manifest itself, if anything thats whats perhaps the hardest part of all. However, its not all bad news and for some, significant periods of remission does happen.

Entocort (budesnoide) is a targeted steroid that is used for bringing under control problems in the ascending colon and the terminal illium and is used for mild to moderate symptoms.
I used to use it alot but its affect wore off and I now need predisonone steroids when flaring, but when it did work I really liked it as it had no side affects for me.

Hopefully if you get your flare under controll then the pain should lessen, however you have to eat so if you can't due to the pain then you should see a doc to get some proper pain relief,

take care

G
 
Hello Mrs Womble, you've been through a rough time especially with the birth of your daughter (cery scary) we have lots in common I too am recently diagnosed with crohn's in the terminal ileum, I also have young children and i'm also an OT (although i jumped ship and retrained as a physio some years ago!!!)... anyways i'm on prednisolone and it's really helped me get back to normal. If you had good relief from it before would they not put you back on it?? also are you taking any pentasa? Hope you get some relief soon dec seems like a long time to wait for an appointment.
 
Hi Charlotte
and welcome fellow Brit

Wow, what a horrible scary time, glad you're both ok!
I have Crohn's in my terminal ileum too, and I've tried Budesonide 5 years ago, it did diddly squat for me, I tried it again in July this year after 6 months of Pred, but it was awful, it made me foggy, confused and disorientated, I'm back on Pred, 10mg, and tapering. I've been on Pentasa for 5 years, and had remission all that time til a massive flare back in Jan. When I feel poorly with gas, bloat, diarrhea etc I revert back to the low residue diet, this always works for me, you can read about it here

http://www.crohnsforum.com/wiki/Low-Residue-Diet

For pain, don't take any NSAIDS, like Ibuprofen, Diclofenic etc, big no no for a Crohnie!
Parecetamol or Codeine is ok, Codeine Phosphate is even better but it's on prescription, it stops diarrhea in it's tracks.
Glad you found us, lots of friends here for you
lotsa luv
Joan xxx
 
Thank you all so much for all your replies. I feel quite overwhelmed that you all took the time to read my story and give such lovely support and great advice. I will read all the links you have suggested and am slowly exploring the site and finding so much information.
I am wondering if they may change me to pred as this was the original plan by the consultant but was changed on the day of my discharge. I think as I already take a lot of medication for the epilepsy which have plenty of side effects they wanted to see if the budesonide would work first as I understand it has a lot fewer side effects and interactions. I have been given the number of the IBD nurse specialist so may give her a ring. Not quite sure what her roll is or if she could help, has anybody had any experience of using them?

Nice to meet another mum and OT on here Alice (even if you are now a physio!!!) I am only on the steriods at the moment plus iron, vit b12 and calci chews, omeprazole and pain killers. Not heard of Pentasa, is it used after coming off steriods?

Thanks for the info on the pain killers Joan- I have co-codomal 30-500mg on prescription and just codeine phosphate and paracetamol seperately so mix and match these but the pain a few hours after eating is still pretty bad. The codeine is helping the diarreah though :) and I will definately look into the low residue diet. I am very lucky to have a husband who is a chef so he is trying to tempt me with lots of nice thngs, just have very little appetite.
Thank you all so much again and look forward to getting to know you all a bit better. I feel so much better just for not feeling alone.
 
Pentasa is a maintenance drug which quite a few people with CD or UC take, I was given it before the steroids and it's an anti inflamatory for the intestine, also it doesn't seem too bad for side effects (well for me anyway)... i'm dying to come off the steroids but they won't reduce them until I have surgery (who i'm seeing on tues, so will know more details then...) all the best and read through all the posts i've got great advice from them from people who know!!
 
Alice
Thank you for the advice and good luck for Tuesday when you find out about the surgery. I hope it goes well.
Charlotte.
 
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