03-27-2012, 09:27 AM   #1
Jocky
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My Story

I was diagnosed with Crohn's about 10 years ago when i was about 13 or 14yo and since then i've kept things very private. I've never spoken to anyone with Crohn's or any other IBD before and find it very hard to explain my problems to other people, even my parents. So i apologise if this post is a bit scattered and badly worded in places.

As i say, i was diagnosed in my early teens, although i was very sick throughout my entire childhood the doctors couldn't explain it. The late diagnosis was probably because my main symptom was constipation instead of the usual diarrhea associated with IBD and several early colonoscopies and barium tests came out negative. There wasn't a specific date that i was diagnosed either, the group of doctors i was seeing at the time just sort of gradually came to accept it was Crohn's over a long period of time but i do remember my first course of steroids as a pivotal point in my life. I'm sure others on here can relate to when you start feeling unwell over a long period of time, you don't really know how ill you are until you experience full health again, so being on steroids was a huge shock to me. Suddenly i had the energy to do everything i wanted and more, i felt so great that i joined all the school sports teams (football, tabletennis, golf, even track and field, things i can't even imagine doing now), so imagine how depressed i was to find myself virtually bedridden and housebound just six months later.

Like everyone else with Crohn's i went through the list of drugs trying to find one that worked for me, starting with pentasa and antibiotics. Nothing seemed to work so surgery was suggested as an alternative, i had nothing to lose so i agreed to whatever the surgeon thought necessary. My first major surgery was to bypass my colon completely to give it a break, leaving me with a colostomy.

Things gradually started to improve, i got used to having a stoma and got back into school part time, gaining a few qualifications in the process. I was still trying to find a treatment that worked and i thought i had found the answer with infliximab, the first 3 infusions went without any problems and i was feeling well enough to start looking for a job. I went in to hospital for my 4th infusion when i had an allergic reaction to the drug so the doctors agreed that infliximab was no onger an option for me any longer.

I spent almost a year without any medication at all and i quickly deteriorated in the last month or two, eventually leaving me hospitalized with septicemia. i just felt generally tired and feverish but i could tell that the doctors were really worried about me. Apparently the problem was my colon and there was nothing else that could be done apart from to completely remove it along with a small section of small bowel. Having an ileostomy was no big deal to me, after all i had lived nearly two years with a colostomy. Although the original plan was to reverse the colostomy after 5 or 6 years, in my mind it was allways permanent so i was a little bemused by all the fuss everyone was making.

Since the ileostomy, i haven't had a single problem with my digestive system in years but i have had a lot of probems with the rest of my body. First came the Fistulae then the abcesses which developed into hidradenitis and finally in the last few weeks i've had a lot of joint pain wich the doctor suspects is some form of artharitis, although i'm still waiting on a concrete diagnosis.


Thank you for giving me a place to talk about my problems, i feel so much better already
03-27-2012, 09:42 AM   #2
CLynn
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Hi Jocky! Glad you are here, it's a great forum, so great to have others we can ask questions, vent, learn from, etc. I wish it had been around in 1988!
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Cheryl
Diagnosed:1988
Previous meds: Sulfadiazine, Flagyl, Prednisone, Imuran, Pentasa, Asacol
Surgeries: re-section 2004
Currently taking: B-12 injections every 2 weeks, multi vitamin/mineral, fish oil (1000 mg), D3 (5000 mg)

Also lucky enough to have psoriasis as well.
03-27-2012, 01:55 PM   #3
Ihurt
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What other symptoms did you have when you first were thought to have crohns disease? I am not diagnosed yet, still in the midst of things, seeing my GI doc tomorrow to go over my symptoms.

My main symptom is Pain. I do not have diareha. I have had constipation, but usually my stools look pretty much normal aside from occasional mucus in them. I usually go every day, once a day, but lately it has been once every other day. But like I said, my biggest issue is constant pain and bloat and crampiness and just icky feeling inside. I feel this through my whole digestive tract( upper gut, lower gut, stomach).

Anyhow, I will see what the gastro doc says tomorrow. I have been having issues with my gut( upper mainly) for a long time. I went on a gluten free diet and it got better. Well last year I got the stomach bug and have had issues ever since on and off. Well this last month I am in constant pain that will not abate. The GI doc first said IBS, I could not belive that IBS can cause this kind of pain, but he said for some it is severe. Well tomorrow I am going to see him and tell him how bad I am feeling and will likely do tests to check for crohns. Just wanted to know your symptoms. I know most people with crohns have the classic symptoms of diarhea sometimes bloody several times a day, but I am learning that not everyone has the diarhea. Why are doctors so stupid? My regular primary care doctor said that since I do not have the Diareha, it is highly likely not crohns, which is why I am going back to my GI doc tomorrow. ANyhow, I am sorry you are dealing with this. I am happy you are doing well now.
03-27-2012, 03:36 PM   #4
Angrybird
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Hello Jocky and to the forum. I think it definetly helps getting everything out and down on 'paper', especially here where everyone gets it. How a things now with regards to the fistula/abcesses? Are you on any medications? It is not uncommon for people with crohns to develope problems with joint pain so I hope the docs can get this sorted for you quickly.

Glad you have decided to join us hun, we are here when you need us.

AB
xx
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Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
03-27-2012, 06:05 PM   #5
Jocky
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What other symptoms did you have when you first were thought to have crohns disease? I am not diagnosed yet, still in the midst of things, seeing my GI doc tomorrow to go over my symptoms.
Your symptoms sound almost exactly like i had early on. Although i had suffered from constipation since early childhood, things only really kicked off when i had a bad stomach bug which triggered the bloating and fatigue that you are going through. I know exactly what you mean by that "icky feeling" and i know it's hard for some doctors to realise how horrible it can be, so i really hope your GI doc will take your concerns seriously and get to the bottom of your problems soon.


Hi Angrybird, my fistula and abcesses are still a bit of a problem but i'm hopeing they will respond to another course of Humira that i'm waiting to restart soon when my white blood count goes up a bit more. Apart from the Humira, i'm just on antibiotics at the moment along with b12 injections every 3 months
03-28-2012, 01:29 AM   #6
Angrybird
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Hi there, I hope you can get back on the Humira so it can sort things out for you. Also do have a wander over to the fistula/abcess sub forum as there will be helpful advice and support here from people in the same boat as you: http://www.crohnsforum.com/forumdisplay.php?f=76.

AB
xx
03-29-2012, 12:56 PM   #7
David
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Hi Jocky and welcome

I'm so sorry you're having so much trouble

I'm pleased to hear you're on vitamin B12 as I was going to ask you about that after reading your first post. Every 3 months is at the low end of the spectrum for how often most people who need injections get them though. Do you know what your actual serum vitamin B12 levels were last time they were tested? And when was that test?

I'd also suggest getting your vitamin D levels tested. People with Crohn's Disease are commonly deficient and it can lead to a host of problems including joint, muscle, and bone pain.

I wish you all the best
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