My story - 23, Male, England

Crohn's Disease Forum

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Joined
Sep 15, 2011
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42
Hi,

Not really sure how to structure this 'story', and until now ive been reluctant to join this forum.. not because of denial but because when i read what a lot of people are experiencing - their symptoms - i didnt want to believe that i was the same.

So about me.. Im a 23 year old male living in england, ive worked for 5 years in telecoms and business, gaining a degree part time in the process (lots of hard work and no social life!). I am currently on my last year of a masters degree.

Up to februrary this year (when I was still 22) I have been very fit and healthy, exercising and eating plenty fruit and veg (but also my best friend.. sour sweets).

From February to June this year I was passing blood with and after my stools (but not actually in them). I visited the doctor and he gave me anusol, putting it down to internal piles. This continued (but not with every bowel movement) until june this year and then stopped for 5 weeks until the beginning of july. I lived a normal and active life up then, but with A LOT of stress building up at work (with a carrot and stick promotion over my head..). I was waking up in the night with a bed soaked in sweat a number of times, and having to change the bed! i realise i was trying to do too much.

In July I started getting pain in my right lower abdomen which i thought was a strain at the gym, but which got progressively worse at the same area. toward the week (the friday) I couldnt push a stool out due to the pain on the right side. I visited the doctor and he said it was appendicitis... I went to the hospital on the Saturday morning (he had to do bloods which took overnight) and eventually got my operation Sunday Night/Monday morning. The op lasted 3.5 hours when it should have been 45 minutes. The doctors told me they had removed a small part of the bowel at the terminal ileum and cecum which the appendix had 'infected',but the consultant stressed there was nothing to worry about.

After the operation i lost my apetite and was getting bad diarrhea which ive never experienced before (and rarely have in my life). I was released from hospital 6 days later with staples in, and still in a lot of discomfort (sleeping on your back all night is a pain in the arse). Two days later, i had a hematoma and was back in hospital. the staples had to be taken out to remove all the black/infected blood, and my whole right side was swollen.

Since the end of july ive been seeing a district nurse to have this surgical wound cleaned, packed with cotton and redressed (it was 12cm long, 2cm wide, 4cm deep on day one). its been healing from the bottom up since might take 3 more weeks to heal.. its a slow process.

Anway, the biopsy results came back 3 weeks ago and i was called for a colonoscopy 2 weeks ago, which confirmed crohns disease (the inflamation an ulceration had returned at the site of the operation). i had an MRI scan two weeks ago and the results came back last week as clear, except the small part where they operated.

Ive been put on metronidazole for the moment (my last pill is today, of a months prescription) and will be seeing my consultant again next friday to discuss the MRI scan and what medication i will need (ive been told i will need something).

So, im not gonna ask many questions as im sure there are appropriate sections of the forum to do so, but what can i expect in the future? Other than a few mild cramps in various areas of my stomach area, a bit of pain prior to a bowel movement, and this open wound (which will eventually heal up) i dont get any problems. is that likely to stay the same... or am i more than likely a ticking time bomb ready to explode again?

ive come to accept this disease is here to stay, but i guess thats because the symptoms im experiencing atm arent that hard to accept. i just want to lead a normal life, im only 23!.. i fear that it might not go 100% my way in life!
 
Hiya Palwe
and welcome

Ok, deep breath!
Get yourself genned up on this disease, but research it here, not so many horror stories here like on the 'net!
We have tons of info and lots of success stories.
Research the meds options to maintain, such as Azathioprine, Mercaptupurine (the immuno suppressants)
Pentasa and Asacol (the 5ASAs)
Remicade (Infliximab in the UK) and Humira (the biologics)

A lot to take in I know, but better than coming away from gastro totally blinded by science!
This disease is manageable and that takes time, so Patience Young Jedi!
Any questions fire away, lots of Crohnie experts here for you!
Good luck and lotsa luv
Joan xxxxxxxxx (off to watch Corrie now)
 
Hi! Welcome! So sorry to hear you're going through this. Like Joan said, reading up on "maintence" meds will give you a good idea of what to talk with your doc about. A "maintence" med is one that you are on long-term to control the IBD so it hopefully doesn't "flare" as often/severe as it might otherwise.

Again, :welcome:
 
Hi Palwe,

Sorry that you are going through such a hard time. Please investigate LDN when you get a chance. It is a very powerful therapy with minimal adverse side effects.

Researchers have found people suffering from CD to have half the normal level of endorphins in their bodies (ncbi.nlm.nih.gov/pubmed/7865897). Endorphins are our natural chemical responders that help us deal with stress on a daily basis. People that don't have adequate levels of these responders are more adversely affected by stress, resulting in higher levels of anxiety, depression, and inflammation. Over time, continuous inflammation can wreak havoc on an otherwise healthy body.

LDN works by boosting the daily production of endorphins by up to 300%. This boosts your levels closer to the normal range, reduces inflammation, and promotes mental health stability.

LDN is not typically prescribed for CD because that would be an off-label use of the drug. It was developed for use in higher doses to wean people off of opiate addictions. It is not illegal for doctors to prescribe LDN for CD, but is not popular because their have not been enough clinical trials done to prove its efficacy. However, it does get prescribed and people are on it... check the forum for more on their stories.

Other ways to increase endorphin levels include shenmen point acupuncture, rigorous exercise, eating hot foods containing capsaicin (i.e. chili peppers), taking D-Phenylalanine supplements, and having sex.

Clearly, some options are more attractive than others! LOL

Hope you start feeling better soon.

Peace,
Geoff
 
HI Palwe, Welcome to the forum , i have had crohn's now for 21 years and counting.but, i never had any surgery. Life is not over my buddy just because you have crohn's. I will tell this, your depression and stress will not help the disease any. Be on the postitive side there are many new medications out there that help control the disease and drive it into remission.That's right remission i was in remission for about 15 years it started acting up again this summer because i wasn't taking my medications. Which is very important to take your medications. Also, i would if i were you get a diary and write down what foods cause you grief and the one's that don't and stick to the ones that don't cause you grief. I can tell you lots of stuff to avoid but you have to try it yourself it's all trial and error. This forum is very supportive and well knowledgeable, so like astra said if you have any questions just fire away. Just one thing before i go, i would stay away from spicy food.:cool:
 
Sorry you're having a hard time, like everyone's said this forum is full of information that would be good to read.
Also, I don't think LDN isn't licensed in the UK, but there's tons of other medicines!
Just don't worry, everyone is different and no two stories are the same, just keep positive - easier said than done, I know!

Vicky xxxxx
 
Hi palwe and welcome to the forum, Sorry to hear about the bad time you've had, Im 24 and was diagnosed at 21, had a resection in april and had to be kept in hospital till the end of july when i needed further surgery to have an ileostomy. so i understand where you are coming from. It is hard when you go from being fit and healthy and leading an active life to being so ill of a sudden, but be patient, you will get better and there is no reason your life wont be just like it was before.

as far as you're wound is concerned it seems to be quite common after having staples, after both my ops mine opened up, It wasnt 4cm deep like yours is but not far off, and it has just about healed up and doesn't look to bad at all considering.

as for the future, i know that when i was first diagnosed i found meds that worked and had 2 years where i very rarely even had symptoms of being ill. The odd flare and a week or 2 in hosp but i did everything that i did before, without pain. unfortunatley it all came crashing to an end due to something that wasnt down to a crohns disease flare. and had something not happened i would be perfectly well and controlled by medication still.

Everybody is different but providing everything goes well theres no reason to think things wont be the same. Keeping positive will take you a long way!


anyway my facebook addy is in my signature so feel free to get in touch if you need to chat, Theres plenty of great folk on here who will help with any advice you need, I dont know where id be without this place!.
 
alright. Im 28 and been diagnosed for 2 yrs, its been a bit of a struggle but i seem to be pretty alright now. I would say listen to your body, if you tired in pain etc dont push it.
Stress is bad (mentally and physically) so take it as easy as you can (nothing is worth being ill over).
Dont over exercise if you are ill or have just been ill
Work out what foods you can and cant eat (this forums pretty good at giving you hints)
When seeing your doc/nurse dont put up a front, if your feeling bad, going to the toilet loads, tired etc tell them. They should be able to help, if you just shrug it off saying you can cope you wont get any better (personal experience there lol)

Welocme to the forum anyway and hope you find some help
 
thanks for the responses everyone. its putting my mind at rest that im not on my own and that my symptoms are at least understandable to a lot of other people. im just glad that its only affecting me now and not when i was younger. im much more grown up now and able to handle crap (had to grow a thick skin at work...). cant imagine how children/teenagers deal with this...!

id never heard of crohns disease until july this year. i really cant believe i had never heard of it, as speaking to family and friends theres a lot of people who they know who have it (friend of a friend etc.). i must have been living under a rock, its quite common! i really wish i hadnt heard of it though, and i was happy under that rock. it was quite a good rock actually. i guess this was my destined path in life, im not very religious though. must have done something bad in a previous life if its down to god though!!! :D i wont let it beat me though, im the type of person who will keep fighting stuff, including illnesses and not get bogged down. seem to be quite strong in that sense (i was shocked when i was first diagnosed, but got over it with a nights sleep).

as for depression, i dont really get depressed. im quite a strong person and theres been a lot of shit times in my life so far (none that outweigh the good times though). i dont have that many friends and the ones i do have i dont see all the time. so im quite a positive person considering (i like being unsociable a bit though to be honest :p).

you might catch me in various parts of the forum, just pm me if you want to (not sure what i can offer at the moment, but i can talk for england if thats what you need ... lol).

sounds like crohns doesnt have too many special requirements, and in majority its doing and eating things in moderation. i guess thats advice people who are completely healthy should take heed of too.
 
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