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09-04-2012, 12:12 PM   #1
sanni
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New to forum, not new to Crohn's

So... where to start. I am Sanni and I have Crohn's. (and I love smileys... be warned). I live in Finland and a friend of mine directed me to this forum. What I am hoping from it is to find more support in issues I have since I have a long history with my illness and in a country of a population of only 5 million its hard to find the type of support one with a difficult illness may need.

Im sorry, byt there is no way to do this short....

So like I said I have Crohn's. I was diagnosed in -93 when i was 12 years old. My first operation removing about 20 cm (sorry... using the metric) was in -95. It was to remove some strictures in my small intestine. Since then similar operation has been done to me in 1999, 2001, 2003, 2006 and 2008. With a loss of about 2 meters and more of my small intestines and an experience in 2006 with a septic bowel caused by ruptures of the stiches and ending into a second operation to fix the situation with an ileostoma. Stoma was closed 5 months later in 2007. However in my 2008 operation I was again fixed with an ileostomy and two years later of my own choice my large intestine was removed as a whole in 2010 leaving me with about 1,7 meters (thats about 5'8 inch = same lenght as me) of small intestines ending into a stoma. So I also have a sevire case os SBS (short bowel sydrome).

Meds... lots of them. Starting off with salatsoprin (I may be mis spelling them cus I cant rememeber anymore and cant be bothered to check). But I was alergic to sulfa. Nex was Asacol.. later changed to Pentasa. Azamun was started at some point of time and I probably used it for over 10 years. Cortisone was almost always used since I was never able to drop the dose and be clear of symptons. Either prednisone or entocort was on my pill list for a long time ending up in a situation where my own body stopped producing cortisone of its own in 2008. I think around 1998 I tried a antibiotic coktail used for tubercolosis. I ate the coktail (of I think it was 6 antibiotics) for a year. I am sure my stomach never has been the same after that. My trial with Remicade in perhaps around 2000 but no help was found of it. After failing with Remicade I had Flagyl added with Azamun to my normal meds for several years. Flagyl was initially ended maybe aroun 2005 for causing tingles in my toes (start of nerve damage). Azamun was ended before my operation in 2008 after the operation that gave me my permanent stoma I started up Humira. Been on humira ever since on dose 1 pen every 2 weeks. Now it may be humira, or it may be the loss of the "grow" area of my Crohn's but I have not had a flare up since 2008.

However I do have SBS and between the years of 2008-2010 I was using partial parenteral nutrition with infusions 3 times a week. The two hardest years I had I am sure. After my operation where they removed my large intestine I had an infection in my iv-port that made me hospital bound for 6 weeks. Durring this 6 weeks a new hydration plan was made for me and I have been on it ever since and am in pretty good condition now (all things in consideration). So I drink a electrolyte mix about 2 liters a day and some protein supliment drinks and with that a normal diet of about 3000 cal and I manage pretty good. Friends say they are jeloys I can eat like a truck driver and not gain a pound. (I am continuously trying to gain weight)

(Taking my dog for a walk and will be back in a bit later to contionue).


Edited text to fix up some spelling.

Last edited by sanni; 01-27-2013 at 08:11 AM.
09-04-2012, 02:41 PM   #2
sanni
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Back from my walk. Enjoying a cup of tea. And will finnish off my introduction.

So more about me. I am 31 years old. I had to end my studys to become an engineer of hvac at around 2006. For 5 years I was on disability. Now however I am trying to get into working life working part time doing light office work. I been working for an amazing 2 months (this is the longest time I have ever had a job in my life). Its exiting to be part of the community in a whole different way. Sadly this work is part of a rehabilitation program and I dont know if I will have anything to do at the end of the year.

On a personal life for the first time I have a hobby that I enjoy. Nearly two years back I took up the courage to take a dog. I mean the risk of falling ill is still there.. and what would I do with him then. But to be honest I have desided that my Crohns wont beat me any more and I have the upper hand. So taking a god for me is the symbal of that. And ever since that day my healt has gone up. For the first time in my life I take a walk out side every day (something that I am sure is good for my osteopenia). I go to agility training once a week and plan to start to compete in it too. And on top of that I do exersize once a week. Atm that is a tai-chi class I just started up.

In addition to my dog my family also has two cats in it. So I am never alone. And a loving boyfriend that a very functional LAT (living apart together) relationship with.

So thats about everything about me and my crohns.

Why I wanted to join this forum was mostly in hope that in a bigger society I may find more people in same or similar situations. Mostly I would hope to find out more about coping with short gut.


-Sanni
09-04-2012, 02:51 PM   #3
David
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Hi Sanni and welcome to the community! I'm glad you found your way here

There are indeed a few people with short bowel syndrome here. One place to look for them might be in our stoma forum. In addition, check at the very bottom of this page as that has a list of threads where SBS is mentioned.

Out of curiosity, do they monitor your vitamin and mineral levels closely with your SBS?

Again, welcome!
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09-04-2012, 02:56 PM   #4
Angrybird
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Hello Sanni and welcome to the forum, I am really pleased you have decided to join

I must day this disease has certainly put you through the ringer! I am glad that the Humira is keeping the crohns at bay now for you. We do have a stoma sub forum that is worth checking out so you can have a chat with the folks here as well: http://www.crohnsforum.com/forumdisplay.php?f=46.

Also have you ever had any of your vitamin levels checked? If so, when was this and are you on any type of supplementation in this area?

It's great to hear you are so active with your dog and the new class, it can be so easy to let the crohn's take over so good for you for taking charge.

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
09-04-2012, 03:09 PM   #5
sanni
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Thank you for your warm welcome. I will definately have to have a look into the stoma section of the forums.

My vitamins and minerals are monitored quite frequently. I have huge problems with keeping up my potassium and magnesium levels and take a huge dose of both every day. Also lots of salt. Vitamin B12 is injected for me every 3 months and they just increased my D vitamin intake last week. If it will not go up they will start to inject it too. In addition I take a multivitamin and I drink 3 protein/nutrition drinks (Fresubin protein energy drink) per day. These can be used as only mean of nutrition but for me its in addition to my normal diet. My blood work is checked about every 2 monts. Every now and then it will be one with more vitamis and other things. Also my ph value is monitored strictly.

Angrybird, I definately know what you mean with crohns taking over your life. That had hapened to me. This last two years has been the time where I take my life back. So far so good.
09-04-2012, 03:33 PM   #6
David
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I'm glad they're staying on top of things for you Sanni. Out of curiosity, do you know what your vitamin B12 level was the last time you were tested?
09-05-2012, 07:27 AM   #7
sanni
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I actually had to call my nurse to check this. But the last time it was tested was in the end of Februarry this year. And the level was 566. So this is about 1 mont after my injection in Januarry. They have not measured it again this year (and it was nopt in the labs that i have still to come ths year). But i have had the B12 injections for several years... maybe 8 or even more and all through that time it has been monitored. I gues they are confident the dose is right.

At the end of this year I get a bone dencity scan that is done every 2 years to see what direction that part of the body is going. Two years back I was diagnosed with osteopenia and have been taking a drug to help prevent it to turning into osteoporosis since then. Will be interesting to see the results and see if the med or increase of exersize has helped.
09-05-2012, 09:54 AM   #8
David
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566 is pretty good Especially if it is pmol/L. I feel people should strive to stay as north of 500 pg/ml as possible.
09-05-2012, 12:05 PM   #9
sanni
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She did say it was above the reconmendation. So Thats good. I gues I dont pay attention to the numbers always since at doctors apointments they just say its good... and I take their word for it. B12 isnt something I am worried about since I know I have the injections. Im more focused on the values that measure your hydration (? maybe wrong word) like potassium, magnesium, creatine and heamoglobin. From those values I can now if I am de-hydrated and if I am I cant really trusrt any of the blood work since it will be consentrated and give better values.
09-11-2012, 08:00 AM   #10
723crossroads
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Your story is very moving Sanni, and thankyou for sharing it. I haven't had to go thru hardly anything compared to you, but other things have caused me alot of pain.
But, again welcome to our forum and welcome to the threads you joined with us!!!
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