Hello new newbie to crohns and writing on forums

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Shellybum
Regular Member


Date Joined Aug 2010
Total Posts : 69
   Posted 9/1/2010 9:53 PM (GMT -7)   
smilewinkgrin
Hello
Just like to say that I'm soo pleased to find so much info, support that is out here in the www, I'm from the uk, I live in Newport south wales. I was diagnosed with crohns disease at last !!! In march of this year, now don't get me wrong I'm not happy that I've got it but after many years in the wilderness it was once to find out that I wasn't a hypochondriac !!! And that yes there was something wrong !!! mad

I'll apologise in advance as this might be a long one, so go grab yourself a refreshment before I start!!!.
According to my mum I've always been a sick kid and apparently if there were ever any childhood illness around I always according to her " have it real bad" . Over the years have had lots of tummy trouble but always thought it was a bug, something I'd eaten or hadn't cooked properly etc etc.
Fast forward to 2004, and after a very traumatic period in my personal life, I was rushed into hospital after going to the docs with a very large and painful lump in my bottom area. It turned out to be a pilonidal sinus!!!. I'd never heard of this before but anyway four unsuccessful ops over an eighteen month period it had not healed!!!
I won't go into detail on a public site but I was not happy with my treatment I made a big fuss, made an official compliant etc etc, got a second opinion who declared that he thought it was a fistula !!!
See not all us Brits have a stiff upper lip attitude lol !!! wink

Anyway another op follows, and with myself and my then partner, who now is my husband, doing our own research after healing problems and suggesting it to my consultant agreed to the treatment and it worked !!! Well kind of until last summer !!
Last July after a period of yet more tummy troubles I temporarily lost my sight in my right eye, I was in sooo much pain and after four trips to my gp over ten days !! Who were treating me for conjunctivitis!!! Even thou I was throwing tramodol down my neck like sweets and that wasn't even no where near dealing with the pain, was rushed to the emergency eye clinic with a diagnosis of uvietis.

After a long barrage of tests I was diagnosed with crohns disease, along with my eye which flares, I suffer really badly with flare ups every three to four weeks !!!! I have a gi and a specialist nurse, and I suppose it's all trial and error but at the mo it's really getting me down!!! I'm a really positive person normally who has a very wicked sense of humour and usually see the glass very much half full, not half empty.

Since march iv been placed on endorcort, don't know if i've spelt that right which initially was 9mg daily but since June I'm down to 6mg as my gi started me on azathiaprine but my body couldn't tolerate it !!! To the point where I was off work for seven weeks !!!. The list of side effects they say you can get boy !!! I literally had them all !!! No joke !!! Was going to be placed on I think mercaptupurine ??? But unfortunately three weeks ago was in really acute pain again !!! And ended up seeing my gi, who thinks my gall bladder is playing up!!!
So I'm due a scan Friday, had an MRI a few weeks ago and the result of that is that I'm seeing my gi next week along with a surgeon but at this present time I have no idea what the result showed!!! This made me very upset as when i asked what the results were, he stated that we need to deal with my issue of the gall bladder first,and leave the MRI result until I see him and the surgeon next week !!!! mad

There are so many other things I could put on this thread but I'm not joking I'd use up all of the world wide web hard drive !!!. Lol!!!

Anyway !!! Now please hold on I'm nearly there, go on go and take a toilet break !!


smilewinkgrin basically iv been told it's in my anus, and my small intestine, I suffer with mouth ulcers, knee pain, skin tags, a really nasty sore rash that breaks out on my booty !!! Etc etc.
What I'd like to know guys is does it get better? Any advice would be most welcome. Any suggestions with how to approach build a relationship up with my gi!!! Because I think he's already pissed with me at every a ppt as I bombard him with endless questions!!!.
I've made changes to my diet such as I no longer can tolerate any veggies, fruit etc. Basically anything that is healthy !!!! I've stopped eating dairy as I read about research work on the map virus, what are your thoughts on that ?
At the mo it's five in the morning in the uk and I'm up yet again with my many trips to the bathroom with my best friend the toilet!!!! We've bonded very well over the last few years!!! Lol!!!
Anyway guys, I truly apologise for my long thread and to the moderator if I've done something wrong on here then please let me know. I would just like to say hello, thanks for setting up this great site and I look forward to your replies.

vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 9/2/2010 1:10 AM (GMT -7)   
Hi and welcome :) (although I am sure you would rather not be here given the choice ;) )
I don't have enough experience to advise you on all the issues you have with this disease, it does sound as if you are having it pretty tough and I am sure that once the other side of the world wakes up (;) they will be able to give you some excellent advice.
It does appear that many with crohns have symptoms for many years before becoming diagnosed. I had resorted to trying to find a diagnosis online with my son's symptoms(after years of problems) it was only then that his GP agreed to blood tests.
I think you are correct that itis a bit of trial/error, what works for one may not do so for another. Like you son went onto entecort pentasa and azathioprine, fortunately it appears to be working for him(for now) Once they hit on the right treatment for you then hopefuly things will ease up although I have heard Crohns referred to as The Sleeping Monster which sums it up pretty well I think.
Son's consultant told him minimal fruit/veg and no wholemeal/brown bread ,pasta etc. I think it is fair to say that many Crohn's sufferers take vitamin supplements to one degree or another either to try and offset any side affects of drugs or to 'put in' when particular food groups are eliminated.
I guess re relationship with your GI ...................!! Unfortunately some are very much "I am the consultant and you should be doing x,y,z and don't question my judgement etc" but on the whole a lot of them do listen to their patients re treatments, thoughts, ideas etc. If you don't feel that he will do this then could you ask around and find out other's experiences of other GIs at the hospital(I am sure there is more than one GI) Fortunately son has one who actively encourages online research and questions and patiently works through anything I have to ask :D
Also as you are in the UK, have you thought about NACC(either looking at their website or joining?) There is a wealth of information from drugs/treatments, benefits etc.
 
I hope you get some relief soon

Shellybum
Regular Member


Date Joined Aug 2010
Total Posts : 69
   Posted 9/2/2010 1:58 AM (GMT -7)   
Hi vixen
Thanks for your reply, and I'm sorry to hear about your son.it's weird isn't it that for a lot of people with crohns disease, we can't seem to tolerate healthy foods !!!

After I posted on this forum, I contacted the nurse specialist and has stated that she will chase up the dietetics dept today as she forwarded a referral in June for me but as of yet, I haven't heard anything.I think the reason I feel so whacked at the mo is a combination of Noe being able to have a full nights sleep, not eating and drinking enough because literally, just drinking water is making me rush to the loo !!! Etc etc.

I explained to her that I'm on low res diet and have been for the last few weeks, iv stopped eating at six in the evening and stop fluids around nine pm to try and stop the nightly toilet trips, but it still keeps coming !!! What a bummer !!! Excusing the pun !!!!

In answer to your question about the nacc, yes I have become a member, and I'm going to the first local group in October in Cardiff, which is about twenty minute drive away, I can't wait to go and meet people like us !!! That sounds warped but I mean it in a nice way, as I'll be with people who know and understand.
But on their website they don't appear to have forums like this!!!
Which is a shame and maybe it's something that could be brought up at the meet.

Thanks for your speedy reply, and I'm sure that after today we will get to know each other very well !! Lol !!!
Diagnosed with crohns march 2010,small intestine, and anus area. Also suffer from fistula and pilonidal disease.
Currently med:
Endorcort 6mg daily sine march 2010
Azathiaprine - only taken for two weeks, body couldn't tolerate it.

Shellybum
Regular Member


Date Joined Aug 2010
Total Posts : 69
   Posted 9/2/2010 2:08 AM (GMT -7)   
smilewinkgrin
I'm soo sorry vixen I forgot to answer you on the gi bit !!!!
I spoke like I said in earlier post to my specialist nurse who off the record and without actually saying it but uncannily stifled a giggle at my statement that I felt my gi is very much old school, but she has given me some off the record tips!!! idea

Apparently as a specialist gi in our area is the best to have, but hey ho !!! I'm still going to be bombarding him with questions, research etc etc !!! So there !!! Lol !!!

Well I'm well known for chatting on and on and on ...... Lol!!! It's a good job that this is not Twitter !!!! So I'll bit you goodbye for now, I'm going to try to get a little sleep, it's a beautiful day where we are, hope it is for you, blue sky thinking and all that .... turn

Thanks again, and I'll talk to you later ttfn x

vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 9/2/2010 2:13 AM (GMT -7)   
It is bizzare re healthy foods although son thought all his xmas' had come at once re the veg!!
Son is also under a dietician-was put on enteral nutrition for 7 1/2 weeks and now some 8 months later continues with one bottle of this per day to try and insure that he receives enough calories/nutrition (manged to gain 24lb to date).
I too think it is a shame that NACC doesn't have a forum. We didn't have a local support group either but have started one up about 5 months ago.
There are some on here that follow a low residue diet with pretty good results so I am sure that they will be able to give you some good tips/ideas.

chocholic
Veteran Member


Date Joined Apr 2006
Total Posts : 634
   Posted 9/2/2010 4:05 AM (GMT -7)   
Hiya Shellybum,

Welcome to the wierd and wonderful world of crohn's! I'm in the UK as well, up by york. I'm heading to see a surgeon today. I hope that you find some relief, there are several drug you havent been on yet and as such you are in a good position to find remission. I've been on them all and so far all have failed to keep my crohn's in check.
The NACC does have a forum, i think its IBD amd me. I'll see if i can get you a link to it. its not used very much though. i MUCH prefer this forum. I hope you can find the answers you need, and keep asking questions. I think knowledge is power.
Dx - Crohn's (2006), Depression (2010)
Currently - Humira fornightly, iron infusion weekly, B12 3 monthly, prenatal vits+minerals, 15mg prednisolone, calcium supplement, mirtazapine
Tried - aza, pentasa, questran, infliximab
No crohns' surgeries to date, Episcleritis for 3 weeks x 2, pains in hands, wrists, hips, lower back, knees and ankles

Allergic to Infliximab
Was at uni, but have paused the course to try to figure out my health!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/2/2010 7:31 AM (GMT -7)   
Just wanted to add my welcome also:)
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Shellybum
Regular Member


Date Joined Aug 2010
Total Posts : 69
   Posted 9/2/2010 8:30 AM (GMT -7)   
smilewinkgrin
Hi there chocoholic and it's nice to see and speak to someone also from my neck of the
Woods,and hello to nanners to thanks for your welcome and I'm sure over the many years to come, we're going to get to know each other a lot better.

I'm so glad I've plucked up the courage to start writing on this forum as I've already gained sooo much information.

Chocholic - I've been to cattarick- I think that's how you spell it a few years ago, is that anywhere near you ?

You mentioned that there are still a lot of treatment options I haven't tried yet,so fingers crossed it will be soon.when I spoke to the specialist nurse this morning, she mentioned the next one being mercaptapurine ?? I think that's the spelling !!!!

I've just woken up after falling asleep on the sofa !!! After yet another disturbed night, but fingers crossed, by next week ,I'll be on the new med and moving onwards and upwards !!!

Well I'm off to, yes you've guessed it, to make a nice cup of tea !!! Speak to you later ttfn x

Shellybum
Regular Member


Date Joined Aug 2010
Total Posts : 69
   Posted 9/2/2010 8:36 AM (GMT -7)   
Oh and good luck chocholic with your appt, fingers crossed and best wishes.
Diagnosed with crohns march 2010,small intestine, and anus area. Also suffer from fistula and pilonidal disease.
Currently med:
Endorcort 6mg daily sine march 2010
Azathiaprine - only taken for two weeks, body couldn't tolerate it.

chocholic
Veteran Member


Date Joined Apr 2006
Total Posts : 634
   Posted 9/2/2010 1:09 PM (GMT -7)   
www.ibdandme.nacc.org.uk/

Shellybum, this is the forum for the NACC. My appt went well, am now booked in for surgery on the 9th of november. My surgeon is really nice. Didnt talk down to me or be in any way condescending.
Only tiny snag is he doesnt do the laproscopic procedure for crohn's bowel resections. He says he has too many patients he tried it with, then had to convert. So now he only does open procedures. Still no NG tube and he only puts drains in if he really has to. Seems like a decent bloke all in all.

I'm sure its up round here, up not too sure where. I'm english but lived in Rep of Ireland for most of my life. Ask me where places are in ireland no problem. Here, not so sure!!
Dx - Crohn's (2006), Depression (2010)
Currently - Humira fornightly, iron infusion weekly, B12 3 monthly, prenatal vits+minerals, 15mg prednisolone, calcium supplement, mirtazapine
Tried - aza, pentasa, questran, infliximab
No crohns' surgeries to date, Episcleritis for 3 weeks x 2, pains in hands, wrists, hips, lower back, knees and ankles

Allergic to Infliximab
Was at uni, but have paused the course to try to figure out my health!

Shellybum
Regular Member


Date Joined Aug 2010
Total Posts : 69
   Posted 9/2/2010 2:07 PM (GMT -7)   
Hiya
I'm glad your appt went well for you today but I feel bad saying that as no one wants to go through all this stuff do they!!!
I'm glad you have a good relationship with your surgeon, after I spoke to the specialist nurse this morning, she said that the two surgeons that are affiliated to my consultant are very nice, down to earth and treat you !!! As in you the person, so fingers crossed after next Tuesdays appt, I'll have the same conclusion!!!

It's nice to speak to you and Ireland and Scotland are the two places I'd love to visit but haven't got to yet. I don't know Yorkshire that well but we have a beautiful country don't we but alas no guaranteed weather !!!

I hope your feeling positive after your appt today, and wish me luck for my scan tomorrow!!! Fingers crossed it's not my gall bladder playing up on top of everything else !!!!

Enjoy the rest of your evening, speak to you laters xx
Diagnosed with crohns march 2010,small intestine, and anus area. Also suffer from fistula and pilonidal disease.
Currently med:
Endorcort 6mg daily sine march 2010
Azathiaprine - only taken for two weeks, body couldn't tolerate it.

Shellybum
Regular Member


Date Joined Aug 2010
Total Posts : 69
   Posted 9/2/2010 2:09 PM (GMT -7)   
Oh and thanks for the link xx
Diagnosed with crohns march 2010,small intestine, and anus area. Also suffer from fistula and pilonidal disease.
Currently med:
Endorcort 6mg daily sine march 2010
Azathiaprine - only taken for two weeks, body couldn't tolerate it.

potty pooper
Regular Member


Date Joined Dec 2006
Total Posts : 375
   Posted 9/3/2010 1:42 PM (GMT -7)   
Hi Shellybum. Just want to welcome you to the forum. As you will find, people here are very helpful, knowledgeable and supportive. By the way, love your sense of humor! We all could use a good laugh.

Shellybum
Regular Member


Date Joined Aug 2010
Total Posts : 69
   Posted 9/5/2010 4:42 AM (GMT -7)   
Hiya potty popper
Nice to meet you, I hope you are well. Personally I think a good sense of humour helps us doesn't it, especially with all the stuff we have to deal with. Look forward to talking to you soon xx
Diagnosed with crohns march 2010,small intestine, and anus area. Also suffer from fistula and pilonidal disease.
Currently med:
Endorcort 6mg daily sine march 2010
Azathiaprine - only taken for two weeks, body couldn't tolerate it.
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