Crohn's Disease Forum » Your Story » Hello, this is my story.


02-10-2012, 07:30 PM   #1
Traverse
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Hello, this is my story.

Hello, everyone.

I'm new to the forums (1st post!) and it seemed this was the protocol to follow and I kind of need to vent about now.

My bout with Crohn's started in 2003, when I noticed a large amount of blood in the toilet after . . . using it. It was frightening for me, as at the time I was poor, in college, with no insurance. I went to the campus clinic, ultimately got a referral to a specialist.

The specialist was good. I saw him twice. We scheduled a colonoscopy (which I clearly couldn't pay for) and was shortly thereafter diagnosed with Crohn's. I was put on Sulfasalazine, which I began taking.

My experience on sufasalazine was pretty horrible, but it made much of the bleeding stop. In a desperate effort to find other "solutions" to this inexplicable disease I read "Breaking the Vicious Cycle." It was useful and not useful at the same time. I had been urged by my doctor that food wasn't the cause of my symptoms, even if certain foods may trigger them. After reading the book, it made me question that.

Needless to say, the diet didn't really work for me. Everything was still pretty bad, I tended to be fairly constipated on the diet, and there was still remnants of mucus and blood. But, it was much better than just eating anything I wanted. I mostly at things like Yogurt, Vegetables, Meats, and Fruits. After about 6 or 7 months on the Diet I moved to Japan, where taking control of my foods was much more challneging, but something great happened: After eating my first meals including rice my symptoms largely were alleviated. Unfortunately, the other foods were so hard to regulate - Particularly the processed and sugar laden things I tended to need to avoid, that eventually my health took a pretty serious dive and I returned to the states. Symptoms returned.

Back home, I quickly used my knowledge of the importance of diet, and quickly the symptoms went back into remission, where they stayed for several years. In this time, I went to law school, and graduated at the top of my class.

It had been something like 7 years since I had seen a doctor about Crohn's, so I decided I may as well see one while I still had insurance, becuase I would be graduating soon and employment prospects were slim. Plus, I suffer from oral ulcers related to food, which I had been told were related to my Crohn's, and I wanted to see if there was anything I could do about that because living on such a restrictive diet is depressing, to say the least.

So I went in, scheduled a colonoscopy. He said it was 100% normal, in terms of look as well as biopsies. I think he didn't believe that I had Crohn's, or something, so I wasn't too worried. He's a nice specialist and the one I still see to this day.


Unfortunately, about the time I began started studying for the Bar exam, my symptoms seemed to get worse. Gradually, I began bleeding again, then increased mucus. Eventually it was pretty horrible with bouts of days where I literally didn't have the energy to get out of bed. So back to the doctor I went.

I was perscribed Mesalamine, (Asacol and Canasa) which I took for about 4 days around Christmas. The medication was pretty effective as the 2nd day the bleeding completely stopped. Unfortunately, the meds had a side effect (different from sulfasalazine) of puffiness in my mouth and throat, and presumably my colon, judging by the stool. So, after reading online I concluded that I should probably stop taking the Mesalamine which the Doc concurred with.

Then I was good for about 1 day (even though there was mucus), then the blood returned. So, we scheduled a Flex Sigmoidoscopy which confirmed that what I had was severe proctitis, and he started me on some antibiotics(Ciprofoxacin and Metronidazole).

The week that I was on the antibiotics was one of my worst weeks ever. My already diminished appetite diminished even further, I was probably eating about 500-1000 calories a day, I couldn't eat more without feeling sick and I couldn't eat less without feeling sick, along with the terrible taste in my mouth and nausea.

Now that that's over, I'm beginning Prednisone, which I've heard mixed reviews about. I don't like the idea that I'm now taking a pretty harsh medication and I'm particularly worried that I wont be able to tolerate it.

I'm crushed, at this point. One of the things I haven't noted is that I can't eat many of the foods I used to tolerate fine. Anything even slightly acidic or sugary is completely off limits now, in addition to everything else I couldn't eat before. The list of foods I will eat is significantly shorter than the list of foods I wont, and that saddens me.

I've been able to get by with the support of my loving girlfriend by she worries about me. And when I woke her up making severe pain noises in my sleep last night, it's understandable why. I am fairly confident at some point I will feel better, though.

So, Hello, and sorry for the long story.
02-10-2012, 07:46 PM   #2
Catherine
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Our experience with prednisone positive so far. Sarah has been on it for 8 days now. She energy levels are much increase and she is back at school. Pain is much reduced. Has gain a 1.5kg or 5 pounds in the last week.
02-10-2012, 07:52 PM   #3
Trysha
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Hello Traverse and welcome to the forum.
You hace certainly had a roller coaster with you illness and hopefully the future will be kinder to you.
I have not had oral prednisone but do have the rectal prednisone foam, which I find works really well for me in stopping the bleeding and some of the pain.There will be others on the forum who will be able to relate their experiences with prednisone.
Feel better soon
Hugs and best wishes
Trysha
02-11-2012, 11:02 AM   #4
Angrybird
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Hello and welcome to the forum I am sorry that you things have taken a turn for the worse for you. I am on the Pred also and it is soo good at sorting out the inflammation but the key is to use it for as short as time as possible (easier said than done at times but it is possible). Can I ask if you have been given a calcium supplement at all? Very important to be on one when taking steroids.

Food is also very tricky, for ages I ate what I thought was a fairly restricted diet: rice cakes instead of bread, soya milk and spread (no dairy at all), not too much veg as these can be bad, same with fruit, no foods with skins, pips and seeds (these aggrivate the bowel). No orange or apple juice or caffeine (totally upset the tum), no fat and very low fibre stuff. Despite this I still got a flare and then a stricture that needed surgery...go figure! After my op my dietician said that these foods do not stop flares from occuring, they may help with symptoms whilst on a flare but even that is not a gaurantee. Now I just stay away from foods that I know have always aggrivated me..I can eat bread again!!

I suppose what I am taking ages to say it that once things inside start gettg calmer again you may find an improvdment again in what you can eat, just be careful and perhaps keep a food diary.

Sorry for the long post I hope is was a little helpful... Hope you feel better and soon and keep us informed on how you get on. I assume to have another GI appt coming up soon?
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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
02-15-2012, 04:10 PM   #5
Traverse
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Join Date: Feb 2012
Location: San Francisco, California
Thanks to everyone for the response and support. It's good to be part of a community, but I still feel like because my situation is so a-typical with respect to the disease that there is still a feeling of isolation.

Just as an update, after ending the Antibiotics my energy level and appetite returned, but the Prednisone has seemed to have little impact, other than the fact that it seems to control my canker sores really well.
02-16-2012, 12:50 AM   #6
MeghanL
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Join Date: Jan 2012
Location: Saskatoon, Saskatchewan
Hi Traverse,
I don't have much advice to give, but I just wanted to offer some support and hope. I was diagnosed with Crohn's only about two months ago and at the time I felt like I was never going to get better. I had absolutely no appetite, could only eat about 300 calories a day and also had that horrible taste in the mouth, not fun! Anyways, I was on prednisone for quite a few weeks and didn't think it was working at all because i still had no appetite and didn't see any improved, but after trying to be as patient as possible, it did start to work and the appetite kicked in and I am back to being able to eat most of what I could before I started getting sick. The only downside is that I am experiencing major swelling in the face, but I'd rather deal with that then go back to how sick I was before. Anyways, I really hope after giving it some time that you also see improvement and I wish you all the best
Meghan
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