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just my musings about my life and experiences
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Well... yesterday I had my second endoscopy performed. My GI doctor wanted to check up on my small intestine to see how its healing, as well as check my esophagus to rule out eosinophilic esophagitis. He took multiple biopsies and said my SI looked atrophied but otherwise I looked good.
The combination of versed and demerol is powerful and I did not remember much of the discharge except for the fact that I Don't think I was ready to be discharged I was so out of it. But I slept it off and now I'm fine. The lidocaine prep that i had to gargle was absolutely disgusting! I do not remember having to do that the first go around... blegh!
Today I got a phone call from the scheduling nurse saying my doctor ordered a hydrogen breath test. I do not recall that being discussed at discharge (no surprise I was so out of it) but neither does my husband. So anyways, based on our discussion I guess he is looking for SIBO.
Everything I have read thus far says antiobiotics, probiotics, low FODMAP or SCD diet to manage this.
I am guarded about this whole thing. On one hand maybe this will finally solve my ongoing symptoms but on the other hand seriously?! another thing!!?
Really really really really tired of being sick and tired. Did I mention I turn 30 next month? I feel like I should be in retirement.
I am a week into my Entocort steroid therapy for microscopic colitis. I can say that I have no discernible side effects from this drug. It has slowed down my bowel significantly. I am no longer running to the bathroom 8-10x/day. I probably go about half that amount now. The quality of the bowel movements has improved but it varies throughout the day. I have not had significant cramping/pain since starting therapy. That was the most debilitating for me was the cramps. I would be late to work consistently due to waiting for cramps to subside/fade.
I think I may have increased thirst but I don't have the steroid side effect of wanting to eat everything in sight that many people get from drugs like prednisone (very thankful for that).
Hoping for continued progress....
I saw my GI yesterday. He and I agreed to start me on Entocort EC/Budesonide medication. It is a slow release 3mg capsule that is not dissolved by the stomach pH and instead gets broken down and absorbed in the intestines. It is supposed to have a local effect versus systemic and is considered safer than prednisone. I will be on 9 mg dose once a day for 2 months then we will start to taper the dose down pending my symptoms and then wean off completely. Many have good results with the course of medication and then go into 'remission' for long periods of time. I am still planning on keeping my food diary to see if I can pin point any food groups that initiate flare ups. I have a nutritionist appointment in January as well. I am hoping things will improve with the medication. I have done a lot of reading and things look optimistic!
I just got the message from my doctor that I have microscopic colitis. I had a colonoscopy last month with biopsies. The colonoscopy prep was not nearly as bad as what people have told me it would be. Honestly the best part of my experience was the prep. The scope was not so great - I woke up several times during the procedure - I was only sedated with midazolam, fentanyl and phenagren - and it lasted over an hour whereas it should have been only 20 minutes. Nothing is every EASY or uncomplicated for me. But I digress... Biopsies were taken and the results are in (kinda).
I need to call the office to schedule the meet up with the GI doc. The earliest they could give me when I was in for my procedure was in January. THe message from my doc said get in sooner - this month. He said to call the office and make sure it happened and have the staff talk to him if they gave me the run around. So obviously we have a lot to discuss. He did not classify the type of MC I have (collagenous of lymphocytic) through the message nor did he mention therapeutics. I am reluctant to try medications if they are to be long-term but struggle with restricting my diet even further.
I am obviously gluten free, but also dairy free (again.. took it back out 2 months ago due to ongoing struggles with diarrhea) and egg free. I know it's possible to go INSERT FOOD NAME(S) HERE free, as many of us have to do... but I just get so disenchanted with it all. I fear food more than I enjoy it these days.
Hoping I'll feel better soon....
Well... my diarrhea has continued and not improved despite resolution of most of my other celiac symtoms. I'm going in to be tested for microscopic colitis next month. I just want to have a normal phucking bowel movement. It's been soo long I don't even remember what one looks or feels like! Hoping for answers.
Well... my boyfriend is a HUGE 4x4 truck enthusiast. He has 2 rigs that are specifically for off roading purposes. Consequently we take these rigs to remote places and drive over lots of rocky terrain. He has rock crawler and a prerunner or something like that. It is very confusing keeping all the classes straight. It's his hobby that I support but not quite understand. He has a forum for his trucks. I have a forum for my bowel. LOL
Anyway... we went to the big King of the Hammers race in Johnson Valley last week. I prepared a TON of food to bring that would make me feel like we were at home and never deprived. I brought burgers, beef stir fry, southwestern chili, baked potatoes, pancakes, chicken tacos, rice pasta with sausage, took apart 2 rotisserie chickens and bagged it. Brownies. The menu was kinda insane! We were there for 3 nights and 4 days. We traveled about 10 hours to get there. I didn't have to take any special potty breaks this time - just the routine fueling and bathroom breaks. I am very proud of myself for that one! :)
I ended up bringing home half the food we brought because there was no way we could eat it all. I am glad to over prepare than under prepare. In all honesty I thought I was going to feed 2 of his friends on the trip. But the owner of the race team owns BBQ Island and of course made BBQ the entire time and fed his whole pit crew. So extra food for me this week!
For anyone that thinks it's impossible to camp or go to remote places... it's not! Go for it. They make portable toilets lined with bags if there are not any regular toilets offered at your location. We brought our toilet but the event was so huge that had porta-potties all over.
Sadly our race car didn't finish the race. Out of like 150+ cars only like 30 or so finished. Fastest car was like 8 hours and some change. Ultra 4 racing is tough!
It was quite the experience. If you're into the off road races.. that is a big one to go to!
If there was such as thing as Celiac Rage-- I've got it today.
I am still healing my bowel from diagnosis last year. I thought I was making progress when I had a normal stool this morning. But then I had BM after BM after BM. And each one got progressively worse. Can I not be a human cesspool of Poop all the GD time? I just want one normal BM. I want it to be large in diameter, firm but not dry, and not some stupid pinky sized piece of poo pretending to be a normal poo. I know you're not the normal poo I used to have!!! When will I have normal stool?
Frustrated and just angry. Not really at my poo ... just angry in general. Trying not to be negative and I have mostly good days but today is just a nasty day!
So... a little background about my personal life. I live with my boyfriend in a rented house and we split bills and rent 50/50. We've been together for over a year now and he is, in my eyes, 'the one.' I've had several failed relationships and would like to think I have finally figured out what I want from a partner in my 10 years of dating experience.
Back to the topic at hand. I am Celiac. I was diagnosed in August through October. My boyfriend has given me his unwavering support through everything. Through the crazy mood swings, exhaustion, transition to a gluten free household. The irrational anger, the crazy bouts of crying (still randomly cry at the drop of a hat-- I was not like this prior to diagnosis).
However due to symptoms on Saturday I was unable to go out to the movies in the morning with him and his best friend. I was reluctant to schedule the movie for the morning show because of my GI symptom 'routine.' I got hit just like I predicted and they went on and watched the movie without me. It really disappointed me that they chose not to reschedule for later in the day...
Same day.. Boyfriends company Christmas dinner. We had discussed it weeks prior and both decided that I wouldn't go because I was sick of bringing my own food and explaining to others why I couldn't/wouldn't eat food. But... we thought it was a formal dinner. The week of the event he told me it was buffet style and that his friend said it wouldn't be obvious if I didn't eat. Great. So I could go now and not be all inconspicuous. But he told me he didn't really want to go himself and didn't want to force me to go. I was kind of looking forward to meeting his coworkers he talks about and spending time with him.
But he decided not to bring me. It made me super sad. I was bawling all night.
I realize that my disease is not the end of the world. But it is something I HAVE to deal with. But he, on the other hand, does not. It's an adjustment period for him too. He's taken on a lot without batting an eye or complaining once. Was this his way of telling me he is sick of my Celiac BS? We discussed it (and I truly mean a discussion, not a fight, not a rant, no crying) and he said he truly thought he was sparing me the trouble. He felt horrible about it once he realized how it affected me. But am I being selfish? Do I need to be more considerate? My coworker thinks that I need to be a better girlfriend and offer a shared household versus gluten free and that I need to cater to him and his dietary wants. But he and I share only 1 meal together and he has never said anything.... But will he resent me later?? Will it build up and cause problems??
Am I thinking too much?
So here is the break down from my blood test results
[indent=1]Deaminated Gliadin Abs, IgA: 50.8 U/mL (8-20-13); 9.4 U/mL (12-11-13)[/indent]
[indent=1]TTG IgA Antibody: 74.0 U/ml (8-20-13); 12.0 U/mL (12-11-13)[/indent]
Reference Range for both is <7 U/mL[/indent]
Interesting to see this decrease for both becuase in October I did 3 weeks of gluten challenge. I'm shocked my body is able to heal so well. I think I am lucky and caught this earlier than most. I have a Vitamin D deficiency.. less than 27 ng/L (30-100 ng/L reference range).
My CBC didn't show an anemia but I've been chronically anemic for as long as I can remember. I was never able to donate blood.
I figured it was time to vent through a blog post. Because I don't think anyone wants to keep hearing the same thing over and over again like a broken record.
Here is a little background...
In December of 2009 I slipped on an icy driveway before work and fractured my right kneecap into 3 pieces and dislocated it up and into my quadriceps muscle. I had surgery to fix it. 6 months later I fractured it again slipping and falling on slippery concrete by a friend's pool. Ironic, right? I had surgery to fix it. Mind you it takes physical therapy to get your range of motion back and learn to walk again. So I was in PT for a year dealing with this. March 2012 I had my third knee surgery to remove 6 screws and a piece of metal called a hubcap from my kneecap. It was being rejected by my body and causing great pain and limiting my range of motion.
After I had the metal taken out (2 screws are left) I regained my ability to work out. I started lifting weights and got addicted to it. I was asked several times if I competed in the gym. I was always flattered and said no. But I really got the bug and want to compete in bikini or figure divisions. I was set on that course until I figured out I had Celiac Disease.
I was working out with my trainer and not getting anywhere with my abdomen. My diet was on point, my cardio was nailed down and I was lifting. There was no reason why I should look pregnant. So I got tested for gluten. Bam, nailed it! So gluten free diet is not so bad. Really, it is not when you consider most fitness competition prep diets are naturally gluten free. We do not eat much processed food and very little carbs during prep. Brown rice, sweet potato, tilapia, peanut butter, veggies and protein powder is pretty much what people survive on. But it's still a pain in the ass. I have cheat/treat days. I want to be normal when I'm around family. Holidays are rough. This is my first holiday season. Ironically, I used to bake a lot! I loved to bake cupcakes and bring them to work for people on their birthdays, for holidays. It brought me a lot of joy to see other people's faces light up when eating one of my creations. I enjoyed one as the taster but usually that is all I'd eat. Now with gluten-free baking you have to have a crapload of different flours. I don't have the finances after purging my kitchen to buy them all at once. So slowly I'm getting a flour at a time. So far I have white rice flour, coconut flour, xantham gum and guar gum.
The store AP mixes are appealing, but they cost a lot. I want to make my own. It will take time and money of which I have little of these days.
Back to training. I've been gluten free since October 25th. I'm still having diarrhea. In fact if I do not take my psyllium husk it is out of control with cramps that just don't go away. I was told by my doctor and by several on the forum that I need to change my training regime. What?! I do not think you understand what you are asking. I need the gym. I don't know what to do without it. This damned disease has taken over my life. I don't want to give up the only thing that brings me joy right now. I sit here at my desk between bouts of nausea and bathroom trips writing this because I called in sick today. This is a problem. I don't think I was glutened. I have gone over all the things I have eaten this weekend and everything checks out. So the only thing I can think of is that I am stressing my body too much. I get it. I do. It's like telling a smoker to quit cold turkey. I need a patch.