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my ongoing battle with uc - please help

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Ulcerative Colitis
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Posted 1/20/2011 9:04 PM (GMT 0)
When born i was just 1.5 kilo's and was born full term.
I was always underweight.
At six months old (when my mother tried to start me on solids) I would vomit every time I ate, plus more, and have severe diarrhoea. I had a nasal-gasteric tube until the age of around 7. In between this time I was admitted into hospital several times and had 4 central lines. The doctors had no idea what was wrong with me and I was placed into several different hospital wards, including the infectious ward.


In 1998, at age 8 I caught the stomach bug that was in the water (cryptosporidium). I was readmitted into hospital with severe vomiting and diarrhoea. I was given my 5th central line and was in hospital for 6 weeks.

I had always found it hard to put on weight and was always very short for my age and got sick very easily. The muscles in my stomach were described as spasmodic


For years There was no problem....
In around 2007 or 2008 the problem started again...
I was suffering from bloating, diarrhoea (6 times a day or more), bloody stools, stomach pains, hiccups, gas, felt like i needed to go to the toilet but couldn't... then when finally did was also diarrhoea and dehydration and all other colitis symptoms.
I was diagnosed with ulcerative colitis.

I was immediately started on pentassa granules, which had almost no effect.

After that I was put onto salofalk tablets (two tablets twice a day), which gave relief for a while.

When relief was over my dosage was raised to two tablets three times a day which worked for a little while.

I kept having flare ups and the specialist I had been seeing had been undergoing a study where if you got your appendix removed it would help with ulcerative colitis.

I did this and it was found that my appendix was infected with ulcerative colitis as well.

This gave me relief for at least a year, if not more.

Now I am 20, almost 21 and going through another flare up, the worst in a long while.

It has lasted 6 or 7 months and I have had severe diarrhoea, a little vomiting, severe stomach pain, blood and mucus in my stools, the feeling of constipation but then when finally going it was diarrhoea, bloating (quite severely at times), feeling generally sick, stomach rumbles, stomach feeling like a dishwasher, constantly feeling sick, weak, and sometimes dark stools.

I am on mercaptopurine tablets and the salofalk with the same dosage of 2 tables 3 times a day.

I have lost six kilos and was on pregnidsone for about a month or more.

I don't know what else to do I have tried many things and am running out of ideas.

I cannot put on weight and am still really sick. I also am constantly tired and have absolutely no energy. I find it hard to concentrate and also to sleep at night

Has anyone had surgery? how long is the recovery and was it worth it?
Posted 1/20/2011 9:13 PM (GMT 0)
Hello and Welcome!!

I have not had surgery but from what I hear, it is very worth it. Most people say their only regret is not having done it sooner.

Have you ever tried any of the rectal meds? either enemas or suppositories? They are available in 5ASA (like sallofalk) or steroid. It may be helpful for you. I don't think 2 tablets 3x a day is the max dose for salofalk, I am not sure how many mg each tablet is but some of us take 4200mg when we are flared up.

Did prednisone help control your flare?

have you been getting your levels checked while on mercaptopurine?

Posted 1/20/2011 9:13 PM (GMT 0)
It sounds like you have autoimmune issues, and not just UC. UC doesn't cause vomiting. Perhaps something like Remicade would help you.
Or maybe you have an unidentified food allergy to something common, like gluten or corn.
But I'm not a doctor!!

If you are unsatisfied with results you are getting, maybe try a naturopathic doctor.
I hope you can find out what is causing you so much suffering.
Posted 1/21/2011 1:31 AM (GMT 0)
Welcome to the UC forum! Do you have a gastroenterologist who subspecializes in IBD treatment? Removing the appendix is not a treatment for ulcerative colitis! Research studies have been done in past decades to gauge whether people who had appendectomies early in life became ill with UC later on, and conclusions were made that these folks tended to have somewhat fewer cases of UC after while than the control subjects who still had their appendixes. That must be what your doctor based his surgery decision on, but I would say it's the wrong interpretation of that research study! From your description of lifelong gastrointestinal symptoms, it sounds like you need a more experienced and reliable gastroenterologist to diagnose and treat your specific problems. It may be that 6MP is not the most effective med for your UC, but another med or med combination would work better for you. Have you ever been tested for celiac disorder? It could be that you have food allergies in addition to UC. To me it sounds like your medical care has been inadequate to-date, and I wonder if you have the opportunity to consult somewhere else. Best wishes! / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 1/21/2011 5:40 AM (GMT 0)
An appendix cannot be "infected with ulcerative colitis". Sounds like you need to find a new doctor STAT.
Posted 1/22/2011 3:58 AM (GMT 0)
Hello,
I have seen many gastroenterologists before and this is the only one that has actually been willing to help! I have been tested for celiac disorder as well as many other things. I have tried the rectal meds as well but they only work temporarily. I get my levels checked regularly with mercaptopurine. I have also been on and off steroids my whole life. Sometimes they help, but not this time. I have also been on pentassa granules before but they didn't do very much. He has also put me on creon tablets before alongside the salofalk
Posted 1/22/2011 4:19 AM (GMT 0)
I recently went ahead with the colectomy and J pouch construction and I'm very happy with the results. The recovery time will be different for everyone, but it was about three weeks before I could give up the pain meds and start driving again. At about six weeks now I'm feeling better than I have in a long time. The process so far has not been entirely pleasant, but it was certainly worth it for me. Jpouch.org is a great resource for anyone thinking about taking that step.

Your medical history makes me wonder if you have more going on than just UC. If this is the case surgery may not help every one of your symptoms. This is definitely something that I would recommend you discuss with both your GI and a surgeon.

I tried remicade before the surgery, and while it worked it was amazingly effective. So that's another thing that may be worth looking into.

I'm sorry to hear things have been so tough for you, and I wish you luck finding some relief.
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