All of your posts have been AMAZING so far. Please, keep them coming...
I realize that all of us are different, but in everything I believe there is also some common denominator no matter how small it may be. Stress for example(though I realize this one is definitely NOT small) is one factor that exacerbates anyone's illness to some degree. Or highly volatile foods hah..
I think that what is most encouraging so far is that many of you have been able to keep things relatively stable by keeping a close eye on diet and exercise though I DO realize that this does not mean everything. All the same, it's comforting. I myself cheated yesterday and tried eating really sharp cheddar cheese. I don't feel ill at all so perhaps I tolerate it, but I have more blood in my stool which has stopped having any form other than particles. It's confusing sometimes even for little things like that because there was blood earlier that morning BEFORE I had eaten it....we'll see later today when I try it again.
As for my own Crohn's experience these past months, I was experiencing the usual symptoms: blood loss, fatigue, no appetite and/or rather inability to eat or drink, sleeping 20 hours a day, and so on. I did the whole colonoscopy/endoscopy procedures and was sent home with asacol(six a day) and prednisone(40 mg a day). I started taking them the next morning and felt completely different that very day. First thing I did? I went to Wasabi and had sushi(probably my first mistake). It was the first time I had been able to walk outside in so long, and I was so happy I really nearly cried. Around this time--Later May-- I moved out of a really horrible apartment situation into a better place with my boyfriend(who I have to note has been exceptional throughout all of this. I don't know what I would do without him!). I used the new energy the medicine, or the steroids more specifically, gave me to fix every room in my apartment. Probably another mistake since I believe I overexerted myself during this period, and I believe it did harm my body lifting some of the things that I did. I also ate more unhealthy foods because I believed I was okay with my little understanding of how this disease works--brownies, hamburgers several nights a week(the meat had gristle and I LOVE onions), chicken alfredo with extra cream sauce, and so on. I really do love to cook...I thought things were normal because I felt great AND my stools were NORMAL and solid. I didn't even feel any pain anymore.
Of course things started getting worse as I weaned off of the prednisone. Blood starting showing up again, my stool got looser, I was less tolerant to a lot of foods I had been eating, and then I got pregnant. Everything went to hell in a hand basket after that. I didn't know I was until about a month in a half in, but symptoms were definitely getting worse as far as Crohn's was concerned: stomach pain, diarrhea, and so on. Of course the pregnancy was not planned, and I had intended to abort, but I spoke with my mother in the end and it was agreed that if I would carry the child she would take it as her own. She wanted a grandchild so badly..
Things went O-K for a little while, but I started noticing some spotting. I went to my gynecologist and he said nothing seemed abnormal but just keep an eye on things and call immediately if anything serious happens. Hah.
That night, and no I didn't bleed anymore(on the outside anyway), I experienced some of the worst pain in my knees and lower back I have ever felt. Like someone was filling them with fluid. I've noticed that my knees do this now when inflammation gets really bad or when I lose a lot of blood. I tried to sleep it away for a little while but to no avail. I ended up crying out in pain(I'm a wimp so sue me!) prompting my boyfriend and sister who was staying with us at the time to come check in on me. If not for them I would, without a doubt, be dead. They convinced me to get to the ER and I did where I found out I had a fever of 103, I was bleeding out and in shock, and I was losing my baby because the pregnancy was ectopic--something my gyn doctor later on said could very well be attributed to the Crohn's inflammation WHICH my GI doctor said could very well have been due to the pregnancy. How lovely.
They performed emergency surgery to correct the situation and I spent the next two weeks getting better. Which is now sort of a joke because a week after being semi-recovered my Crohn's symptoms got worse again and I ended up in the hospital for another week--severe blood loss multiple times day and night, weighed 98 pounds, couldn't eat for nearly two weeks, could barely get water down, etc. etc. etc. But you know I made so many diet mistakes in that time after still being in a moderate flare( thought I was okay after the pregnancy situation was resolved). I ate reese's pieces, twizzlers, frosted flakes with whole milk, white pizza with spinach, chicken on roasted eggplant with creamed havarti cheese on top, salad with tons of blue cheese, and so on. No wonder things got worse. In fact, after the chicken and salad I swear I spent the entire night with the worst pain I have ever felt in my life. I wanted to kill myself so badly in all seriousness. I wished to simply not exist anymore..I cannot stress enough how excruciatingly painful those eight hours were.
Anyway, here I am now on all of the medications listed in my signature. Things have drastically improved though I still have diarrhea, stomach pain on and off throughout the day sometimes accompanied by nausea, and lovely red bowls of blood on and off(I'm still trying to figure out what is triggering them. It seems random..).
I agree that stress has also been such a great part to play in why things have been bad when they were bad. I've spent the entire summer living down to pennies just to get by with bills and the ability to buy ANY food sometimes. Nothing quite like living off of ramen for a few days until some extra money comes in. It was my intention to get a job, but you can see how that plan went down really quickly. Not sure if anyone would appreciate paying me to sit in the bathroom crying all day. Fortunately, I was able to pull some extra in for babysitting my wonderful younger sisters, and my father is kind enough to continue sending child support directly to me monthly(enough to pay half my share of the rent at least you know?). And then of course there are always issues that pop up in the family or boyfriend's family(they have not been, shall we say...the best when it's come to him and I together after I was diagnosed with Crohn's).
That's all I can remember for now. I just woke up about an hour ago, and I am not a morning person!!
A couple of questions though!
I made it out to the grocery store yesterday, a very big accomplishment since I have barely been able to walk after all of this, and I noticed I felt a little better, albeit tired, after returning home. I believe this mild exercise helped things feel better overall. Has that been anyone else's experience?
Also, is there ever any food or liquid that you can rely on no matter what? Water excluded of course. For myself, ensure shakes and unsalted saltine crackers have been lifesavers when I just can't get anything else down. Although the ensure shakes might literally be lifesavers because they were all I could get down during this last really bad flare period prior to getting to the ER again. I have never been so emaciated before. I find it funny because I used to starve myself just to stay at 105. All I wanted was to be too skinny because I thought that it would make me beautiful and happy. It really is a case of ''be careful what you wish for.''
This disease has taken so much, but I have to say that the appreciation it's given me for the things I can and do have is something I could never trade away. It feels like it lifted a veil from my eyes, and I can see the world for what it truly is. Sometimes terrifyingly ugly, but always, in the end, I find the most exquisite picture imaginable in spite of it all.
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.