My story of crohns

[Aky]

Hi every one my name is Aky and this is my first time on any forum so am trying to get use to the thing ..

I was diagnose with crohns when I was 16 and I am 25 now and I also had surgery and had abit of my bowel removed and was left with a clostomy bag when I was 17 and it was mention to be 6month thing but I still have going on now 8 years lol but the thing is it docent bother me because ever since I had have it done my symptoms from all the time running to the toilet stomach cramps they have all gone I have gone withe years with out a little problem and thought nothing of it and the reason I have not had it reversed is because I am affraid of my life when I didn't have it all the suffering I went throw it was alot from what I can remember and I just wanted to ask what you lot think if you can help me an give me advice if it's bad for me In the long run because we no what the Drs are like nowadays and there advice is predictable so I wanted to no from ppl like me because you understand the situation and the suffering crimes causes.

Ps sorry if my grammar ain't as good I wasn't the sharpest in school lol

 

[Grumbletum]

Hi Aky, welcome and glad you found us all here. Take your time and make yourself at home I've not had surgery, but if you look at the main forum menu, you'll see we have a Stoma sub-forum.
It's good to hear you are symptom free. Have you had any tests since your surgery to check the status of your Crohns?

 

[Aky]

No I still have cronese because I still have my ups and downs but they wasn't as bad as before but at this moment I am kind of suffering from abcese near my storma an am taking some antibiotics to treat but the pain is mad some tyms so yes unfortunately I do still have crones but I try my best to not let it get to me and not effect me I still go do whateva I wana do I just recently come back from Kenya an I was there for 3 months and I think that's were I got the abcese from towards the end but Its my fault in a way I do everything and travel quite a bit not trying to boast or anything just wanted to say I started feeling alot beta when I stopes worrying about too much it.

 

[Grumbletum]

That's really brilliant that you can travel and just get on with things. I was just wondering about tests, cos I thought maybe you still had the bag cos the Crohn's is still active. Hope the antibiotics will clear up the abscess for you.

 

[Aky]

Yeah hope so thank u ... What about urself how long have you had it for ?

 

[scottmyster]

HI Aky, welcome to forum, and i am very pleased to hear your doing well. i have had crohn's for 21 years now and i was in remission for 15 years but , it flared up again i hope its a short time thing. i haven't had any surgeries, but if you have any questions fire away. i am sure the forum will anwswer them for you has best they can. this place has great people and a great deal of knowlegde.so to you my very best. best wishes.

scott

 

[Grumbletum]

Yeah hope so thank u ... What about urself how long have you had it for ?

Still a bit of a newbie. Symptoms flared up a year ago, and got diagnosed in April. Fighting an internal abscess and fistula at the moment. But I think I'm getting there.

 

[billyjoel]

Glad to have you here Aky

 

[sjanajayne]

Hiya All
My name's Jayne and was diagnosed in March with something called Illium colitis (inflammation of the Colon) i have been on steroids and am now on anit-inflammatories, to try easing the pain, but no luck as yet, im due back on 21st Sept for another Endoscopy, as i am most of the time in very bad abdominal pressure pain, due to this condition i have in June been diagnosed with osteoporosis.
Due to abdominal & now joint pain (lower back, hips, pelvis N knees) im finding it difficult to walk, climb stairs and bend.
Does any body know anything about this condition (Illium colitis) and are there any remedies at least to ease the pain.
Also i get fever's then chills a lot, with my tongue swelling and turning blue, wen i breath in cold air, Im thinking of buying a baloclave (jokin) lol
Can any body give me any advise, anything at all, as im vertually a hermit in my own bedroom
Many thanks Jayne

 

[connie22]

Take your time and make yourself at home I've not had surgery, but if you look at the main forum menu, you'll see we have a Stoma sub-forum.
It's good to hear you are symptom free.

 

[Tay]

Hi Aky
I am originally fro Manchester too and had surgery at Hope Hospital, Salford. I have had Crohns for 38 years and have had mucho trouble with fistulae and abscesses. I have an ileostomy and like you have a fistula right next to it! Have you tried to attend your local group of the NACC?
Best wishes

 

[Aky]

Hi Tay yeah I don't really get a response from my surgeon it's been like 4years since I actually seen him last because I just got use to looking after myself and am currently on an antibiotic course which is what I normally do when I get a fistula and its calm down alot in the last day or two an the pain is gone am trying to keep of the heavy food and eating light which is helping but fingas crossed it'll clear up with the course and I can get on with it ;-)

 

[Tay]

Hi Aky
I have absolutley the same attitude as you with respect to looking after myself. Every time things start to go 'pear shape' i go along to my GP and tell him what meds I need. However, I have had one really excellent physician over the years who really did save my life on at least two occassions - he is now retired. Hope things settle down soon - best wishes.

 

[scottmyster]

HI aky, there are some medications for the pain of arthritis and the one is called tramadol to treat moderate to severe pain . also, there is oxycodone. i have had crohn's for 21 years now that's what i take for the pain is oxycodone when need because it is so powerful. so is tramadol. you can can ask your doctor about these and see what is says.
This is my only suggestion but you don't have to go by me. just said to myself to give heads up on a couple of meds to take if your in real bad pain. best wishes

scott

 

[Aky]

Hey thank you all for the advice much appreciated it's good to talk to ppl who experience the same problems and no what you are going throw thank you.
Am half way throw my course of the antibiotics and can see the difference and feal It aswell I hope it clears the fistulae because I need to get back to work and can't afford the time of because of finacial issue and can't do with the extra stress because you all no that's one of the reason that causes the problems.
@ Tay I wanted to ask if you still got your clostomy and how long you have had it ?

 

[Tay]

Hi Aky
I have had my permanent ileostomy (had my colon and rectum removed) for about 19 years. Had to have it re sited on the other side about 10 years ago due to fistulae. With regards to your financial situation - do you claim DLA? if not you should. You can claim this even if you are working. Look at the Crohns and Colitis UK web site as they have detailed instructions/advice/help in filling out the forms. Best wishes

 

[Aky]

No I don't I didn't think I was intitle to it ... Any way thanks tay I have rang them up an they going to send me claim application and by the sounds of it I think it's going to be a long process lol I wanted to ask can you claim for all the time u missed out ??

 

[Tay]

Hi Aky
You cannot claim for the time you missed out on but hearing of your problems you should be entitled to something, there is a care and a mobility component. STRONGLY suggest you look at the guideance on filling the forms out from NACC now called Crohns and Colitis society. You can phone them up for advice, which I recommend you do - they are very helpful. The guidelines are downloadable. DON'T be put off, its worth the hassle. Don't try and fill the forms in one go, do them a bit at a time. There is a small section for your GP to fill in. Fill the forms in based on your worst day - don't hold back - tell them just how bad it is. Good luck.

 

[Aky]

Yeah thank you Tay am just waitnig for the forms to come and all take it from there thank you much appreciated the advice you have give

 

[Astra]

Hiya Aky
and welcome, not so far from me!
xxxx

Hiya Jayne
and welcome

I've asked a mod to move you to your own thread where you will get the welcome you deserve!
We'll see you there
Joan xxxxx