My Personal Diary

[tzvia]

Hi folks. I'm going to start a personal diary here because I'm having just an awful time with my symptoms and I'm trying to heal so that I can go to nursing school next spring. I've already had to postpone nursing school that starts in about one month because I am not well enough to attend and I haven't been able to get my symptoms under control. Right now, I can't work, I can barely walk a block without having to stop and be doubled over in pain. I have bad fatigue and very low energy. Last week, I was going to the bathroom 30 times a day but that seems to have reduced down to about 10 times with the help of Prednisone. Still, the cramping is horrible. I've been on Humira for about 11 weeks but it doesn't seem to be helping. This week I will be increasing the dose to once a week to see if that helps. In the meantime, the prednisone does help to reduce some of my symptoms but it doesn't seem to be helping as much as it used to. I wonder if I am somehow becoming resistant to it since I've taken it so much. So far, it is the only drug that has helped. Entocort and Pentasa did nothing for me.

In this diary, I will record my symptoms, diet, med intake, and conversations with doctors so that I can have something to look back on as a reference in my attempt to heal. Hopefully healing will occur and anyone reading this might be able to somehow be inspired. I also am starting this diary because I sometimes have "selective memory" about the (bad) foods that I ate or just how severe my pain was, so here will be an accurate record of it. I'm also totally inconsistant with my supplements so I figure if I record it, that will help me with my consistency. Please feel free to offer words of advice , questions, or you personal experience if you feel so inclined.

 

[tzvia]

I'll start with an account of yesterday.

Meds and supplements taken: 35 mg pred, .5 Xanax due to panic induced by pain, another .25 Xanax later on, 250 mg valarian, 1 peppermint capsule, calcuim pills

Food intake: chicken broth with miso, two bottles of vegan Orgain, plain boiled chicken, herbal tea, spoonful of peanut butter, pan seared trout.

Pain level: 9
Anxiety: 9
Bathroom: 12 times?
Ability to move around and get things done: 2

Positive actions taken: I threw out the food in my fridge that wasn't good for me. I sat in the sun for 30 min

 

[Cat-a-Tonic]

Hi Tzvia, I've moved your thread to the support forum as I think it'll get more views and responses in here.

 

[UnXmas]

Hi tzvia, I hope this thread will prove useful to you - it's a good idea. I've just started on prednisone again too, and am kind of wondering what I'm letting myself in for this time round. I haven't felt much different as yet, but I'm reminding myself that last time I didn't feel different right away either, I know I got to the point of posting on this forum about how I could be taking such a strong dose and not noticing anything, not even side effects. Well, the side effects did come, and more benefits than I'd expected... eventually. I think it could really help you to keep a good record to look back on, it's so hard to remember everything we've felt, taken, eaten and try to keep track of what's going on, especially once you get further down the line. Do you find prednisone increases your anxiety?

Just because it's an area I very interested in, because it affects me greatly, I'll be interested to see how you go with diet. I've posted a lot here about how hard I find it to gain weight. I see other people talking about their diets, and I can't believe how they can get by on so little. My first thought reading your post above was, how can you get by on so little food?! So please excuse my nosiness into reading your diet entries . I do hope this will help you though. It sounds like you're pretty sick at the moment, to say the least, so I hope with the meds, food and everything else you'll soon be turning things around.

 

[tzvia]

Hi Unxmas,
I hope you do well on the pred this time. I have a love/hate relationship with that drug and it's really the only thing that seems to help so far. For me, prednisone seems to make all of my emotions more intense. I wouldn't say that it causes anxiety, but if anxiety is there already it will be heightened. The same seems to be true for me and any emotion I have while on pred.

I'm also very interested in diet. I've done SCD and GAPS but I haven't stuck with them. I have many food addictions and it's very hard for me to stick with proper foods all of the time. My weight is down to 95 lbs and I do to gain weight but the reason I'm eating do little now is because I have at least a partial blockage and I'm waiting for it to clear somewhat before I eat a lot. I'm scared if I eat too much I'll end up in the ER. My stomach is very bloated right now. Even at 95 lbs, I look about four months pregnant! The foods that I know are bad for me are gluten, coffee, alcohol, spicy food, red meat, processed junk food, raw veggies, and maybe eggs. My best diet would be mostly smoothies and soup and cooked veggies. I tolerate fish and chicken pretty well and also nut butters.

When I cheat on my food plan, it's usually with pizza or Mac and cheese or some sort of deep fried food.

So.... We'll see how this goes! Good luck with your pred. Keep me posted.

 

[tzvia]

Today...

Woke up this morning with cramping and started crying right away. Tried deep breathing to calm down, then took Valerian, since I don't like to take Xanax during the day. As the day went on, the cramping subsided somewhat, but I still have the D. Spoke with the Dr, who ordered some type of sublingual anti-spasmodic drug that may help with the cramping. He also agreed go give me b-12 shots (last test was 233, which he considers normal, but he still agreed to do the shots for me), and ordered an X-ray (since I don't want to drink anything nasty right now that would be needed for a colonoscopy or MRE) What was great about today was that I had some friends visit and help out with things around the house.

Meds and supplements taken: 35 mg pred, 250 mg valarian, 1 peppermint capsule, probiotic, iron supplement, tumeric tea(tumeric, ginger, coconut oil, honey) slippery elm

Food intake: 3 bowls chicken soup, some boiled carrots, couple spoonfuls of tuna fish, two bottles of vegan Orgain, almond milk. I know I need to eat more.

Pain level: 9 in AM, 3 in PM
Anxiety: 8 in AM, 2 in PM
Bathroom: ~15 times
Ability to move around and get things done: 6

Positive actions taken: I saw friends, I asked for help, I got some sun, I had a conversation with my doctor.

 

[Hope345]

Tzvia,

This is such a great idea and I want to follow your journey to remission!!!

I want to encourage my daughter to do the same thing. I hope this does help you and I know it will help others because it already is...
thankyou for opening up and letting us be a part of your life.
from a mother of a teen with IBD

 

[UnXmas]

Did the doctor manage to confirm the extent of the blockage? I hope the new med helps you... it sounds like you've got a lot to deal with at the moment.

 

[tzvia]

The doc wrote me an order for an xray, at my request because I don't think I can tolerate the prep for an MRE or colonoscopy right now. He mailed the paper to me and I don't have it yet but if I still feel yucky when I get it in the mail, I'll go get it done. I'm really interested to see an image of what is going on in my intestines right now.

 

[tzvia]

8/27

I tried the antispasmodic medicine that the dr prescribed for me. It's called hyoscyamine and it actually WORKED. This medicine helped to alleviate my cramping today for several hours. I was even able to go out for a walk in the neighborhood. It's a pill that you dissolve under the tongue and it calms the digestive muscle and also blocks a pathway in the brain from feeling pain. Hyoscyamine doesnt treat the underlying causes and inflammation of Crohns but it sure gave me some relief today and I will be taking more of it until I can get this flare under control. I got the order for the X-ray in the mail. Today, I also tapered to 30 mg pred and took my first weekly shot of Humira.

Meds and supplements taken: 30 mg pred, 1 peppermint capsule, probiotic, iron supplement, tumeric capsules, humira injection, 4 tabs of hyoscyamine during the day

Food intake: banana, one Orgain, cheesy mashed potatoes, plain chicken, baked salmon, spoonfuls of yogurt, applesauce, and peanut butter, mango water ice, cranberry/raspberry juice (organic), almond milk
Pain level: 8in AM, 2in PM
Anxiety: 3
Bathroom: ~25 times
Ability to move around and get things done: 7

Positive actions taken: took long walk, got an hour of sunshine

 

[tzvia]

oops i missed a couple days.. here they are

8/28

I continued to take the hyoscyamine and it is helping with the cramps. A stupid thing I did today was I ate a whole package of gluten free chocolate chip cookies. I could have bought just one cookie at the store but i bought a whole package because the ones in the package looked more appetizing than the one single cookie. When I started to eat them, they were so good and I had no self control. Really, I should never buy a whole package of cookies. So of course I had additional stomach pain after eating these. Sigh.

Meds and supplements taken: 30 mg pred, 1 peppermint capsule, probiotic, iron supplement, 3 tabs of hyoscyamine during the day

Food intake: one Orgain, cheesy mashed potatoes, plain chicken, cranberry/raspberry juice (organic), almond milk, pad thai (from box), about 12 gluten free chocolate chip cookies.

Pain level: 7
Anxiety: 3
Bathroom: ~15 times
Ability to move around and get things done: 5

Positive actions taken: took a walk, forgave myself for eating all the cookies


8/29:

As i recollect what I eat, I realize how much I am not eating veggies! I really need to add veggies to my diet and I plan to incorporate them in. I can digest them well if I cook them and then put them through a food processor. I'm also missing fiber, so I plan to slowly start taking my psyllium again. My cramps are starting to change....now I have a new sensation with them that feels something like suction. It's hard to describe but it feels as if my intestine is getting pulled or suctioned. I tried to excersize today, but it made my stomach hurt. Another upsetting thing is that sometimes I don't make it to the bathroom fast enough if ya know what I mean. This has been happening more frequently : ( Hopefully the addition of some gentle soluble fiber will help.


Meds and supplements taken: 30 mg pred, 2 peppermint capsule, probiotic, iron supplement, 3 tabs hyoscyamine.

Food intake: tumeric tea with ginger/cocnonut oil/almond milk/honey, yogurt, plain chicken, coconut macaroon, some potato chips and onion dip (organic), cranberry/raspberry juice (organic), cheddar cheese, chicken soup with miso

Pain level: 5
Anxiety: 5
Bathroom: ~15 times
Ability to move around and get things done: 5

Positive actions taken: Got my sunshine for the day, had a friend give me a reiki session.

 

[tzvia]

8/30

Today was the first day I woke up without barely a trace of abdominal cramping. Who knows why.... But I wonder if it's related to the reiki session that I had the previous day. In any case, today was the best I have felt in while. I still had some cramping especially later in the day.... That strange kind of suction or pulling sensation in my abdomen. When I cramp, my abdomen gets really hard and you can actually see the intestines contract and move. It looks like a baby moving inside! The D was a bit more manageable today.

Meds/supplements: 30 mg prednisone, 2 cyosysmine tabs, iron, probiotic, beano

Food intake: yogurt, ravioli ( not gluten free), coconut lentil soup with spinach (took beano to prevent gas), plain chicken, 2 orgain shakes

Pain: 2-5 varied
Anxiety: 2
Bathroom: less than 10
Motility: 7

Positive things done: took a walk, made yummy healthy soup.

 

[tzvia]

8/31

Yay for another day where I did not feel pain in my abdomen as soon as I woke! I did have some cramping later in the day, but it was pretty mild. Also, the D has slowed down. I had another reiki session today and it left me feeling very relaxed and free from anxiety. I didn't have to take any of the hyoscyamine today. I haven't been taking all of my supplements, so today, I organized a big pills box with all of the things i want to take everyday....hopefully that will help!

Meds/supplements: 30 mg prednisone, iron, probiotic, beano, calcium, tumeric, mulitvitamin, fish oil

Food intake: yogurt, coconut lentil soup with spinach (took beano to prevent gas), 2 orgain shakes, almond milk, ginger candy, cheesy mashed potatoes, grilled cheese on GF bread ( i love cheese) , cranberry raspberry juice, spoon of peanut butter, i might have some salmon later

Pain: 2-3
Anxiety: 1
Bathroom: about 8 times
Motility: 7

Positive things done: took a walk, organized supplements so I will hopefully take them more often, got reiki

 

[tzvia]

9/1

Strange day. Woke up and had a couple formed stools and was excited about that. Didn't have to go to the bathroom for a couple hours, but then suddenly the D started, and I was in the bathroom for most of the day. Varied between D and constipation and some formed stools and more D and more constipation and D again. I felt drained by the end of the day. Also dropped the pred to 25....not sure if that has anything to do with it. Anyhow, I did get more of my supplements in today but not all of them.

Meds/supplements: 25 mg prednisone, iron, probiotic, beano, calcium, l glutamine, peppermint oil,

Food intake: apple sauce, yogurt, coconut lentil soup with spinach (took beano to prevent gas), 2 orgain shakes, almond milk, cheesy mashed potatoes, grilled cheese on GF bread

Pain: 5
Anxiety: 5
Bathroom: 15+ times
Motility: 6

Positive things done: took more of my supplements, ate applesauce in an attempt to get more fiber (about 2 cups of it), vaccummed the house.

 

[tzvia]

9/2

D decreased today and I ate a lot of food! I think I might even be eating too much because the prednisone makes me hungry. I tried 1/2 tbs of psyllium with no ill effects so I'll do it again tomorrow. I do think it helps. Not too bad of a day, all around. Even went out to do errands for a few hours.

Meds/supplements: 25 mg prednisone, iron, beano, calcium, l glutamine, peppermint oil


Food intake: apple sauce, yogurt, cream of rice with banana, coconut lentil soup with spinach (took beano to prevent gas), 2 orgain shakes, almond milk, tumeric tea with coconut oil, ginger& honey, cheesy mashed potatoes, chicken tacos (soft shell w guac), watermelon

Pain: 3
Anxiety: 3
Bathroom: 8x
Motility: 6.5

Positive things done: excersized 10 min, took fiber, 30 min sun.

 

[tzvia]

9/3

Took my weekly humira today. So far it's 12 weeks on Humira and three weeks of weekly shots. I have to say to still don't feel better. And on 25 mg of pred I should have less diarrhea and cramping than I do. I'm going to call the doctor soon to make an appt to discuss switching from Humira to something else because I doubt it's going to kick in. Today, I managed to eat more veggies and I made myself a nice beef broth from grass fed beef bones. Cramps and D were medium today. Tommorow, I'm going to attempt to est a little less in order to clear things out because I feel I've been overrating a little. Also, got my c diff test result back and it was negative.

Meds/supplements: 25 mg prednisone, a Humira shot, iron, probiotic, calcium, l glutamine, fish oil, multivit, ashwaganda

Food intake: yogurt, 2 orgain shakes, cheesy mashed potatoes, beef broth with pieces of grass fed beef and miso, grape juice, tumeric tea, carrots, artichoke, ginger candy, gluten free Mac n cheese ( belly hurt after that... Ate it when I wasn't really hungry )

Pain: 5
Anxiety: 4
Bathroom: 10 times
Motility: 6

Positive things done: ate more veggies, made beef broth, got my sunshine.

 

[tzvia]

Cramps were worse today and I didn't eat very much. Wanting to get off the pred quickly... I read that it could be adding to the stomach bloating. I'm having tons of watery sounds coming from my gut.

Meds/supplements: 25 mg prednisone, 2 or 3 tabs hyoscyamine, iron, probiotic, calcium, l glutamine, fish oil, ashwaganda

Food intake: yogurt, 2 orgain shakes, watermelon, ginger candy, spoon of peanut butter, cream of rice with bite of banana

Pain: 6-7
Anxiety: 6
Bathroom: 12-15 times
Motility: 5

Positive things done: saw a friend, got my sunshine time, ate less(trying to clear things out a bit).

 

[tzvia]

9/5
tough day! Woke up crampy, took hyoscyamine which did help. I had a few hours where I felt ok-ish, but then things got really bad in the late afternoon. So far, I've had 25 bms, most of which were hot burning liquid, and the day still isn't over. I was supposed to meet a friend, but I couldn't go because I couldn't stop going to the bathroom. Luckily, my friend came here for a visit instead and that was nice.

I just feel awful. I'm taking my meds and not eating bad things.... Although most of the D came today after eating rice noodles with tomato sauce. I don't usually eat tomato sauce and I wonder if that triggered something? I think I saw the tomatoe pieces come out in the toilet like 1.5 hours after I ate it. Tomorrow is my moms birthday and we've made plans, and I just want to be able able to get through the day tomorrow.

I've really lost hope that Humira is doing anything for me. I still feel worse then when I started it. And I feel like I keep getting worse. I'm going to call the doctor on Monday to talk about getting off of Humira already. It 's been almost 13 weeks and the last three shots were weekly.

Meds/supplements: 25mg pred, 2 hyoscyamine, iron, calcium, peppermint oil, l glutamine

Food today: yogurt, beef broth, salmon, rice noodles with tomato sauce, 2 orgain

Pain: 9 not so much cramping, but my butts hurt after going to the bathroom so much
Anxiety: 8
Bathroom: 25+x
Motility:6

Positive things done today: took a walk earlier in the day, saw friends

 

[tzvia]

9/6

I had a pretty successful experience getting the D to stop so I could spend time out with my mom for her birthday. On 9/5 at night, I drank a tea that is supposed to help stop D. It's made from kudzu root and umeboshi plum. I made the tea strong, and then I drank it again in the morning. I also took hyoscyamine right away in the morning and went to meet my mom without eating any breakfast. I took an orgain with me and drank that around 10 am. I had to use the bathroom twice while we were out, but it wasn't too bad. We did have lunch out ... Which caused cramping and then one episode of D when I got home. I did have some cramping during the night, but not too bad.

Meds/supplements: 25 mg pred, 2 hyoscyamine, peppermint oil, calcuim, l glutamine

Food intake: kudzu/umi plum tea, orgain, lunch out- salmon, asparagus, potatoes, lemon gelato, snacks at party later- potato chips, nibbles of brownie

Pain: 3
Anxiety: 3
Bathroom: 8 times
Motility: 7

Positive things done: successfully made it out for several hours today with my mom!

 

[tzvia]

9/7

Weaned to 20 mg pred today and tried to keep foods simple. Despite not eating much, I full very full/bloated. I was able to go out today and the D was manageable. I want to take psyllium to help with the D but I just feel too full!

Meds/supplements: 20 mg pred, peppermint oil, calcuim, l glutamine, iron, probiotic, slippery elm

Food intake: 1orgain, yogurt, banana, watermelon, piece of cheese, sushi(avocado salmon- no sesame seeds) ginger candy, ginger ale (with actual ginger in it, no artificial stuff )

Pain: 3-8 varied
Anxiety: 3
Bathroom: 12 times
Motility: 7

Positive things done: was able to go out and get some things done. It was beautiful out today. Resisted numerous urges to buy food that wasn't good for me, like pizza

 

[tzvia]

9/8

Called Dr and got appt moved up so I can see him sooner. Also ordered another MRE. I'm scared about the MRE because last time I had a bad reaction and they couldn't even finish the series because I was in so much discomfort. They had to wheel me to my car in a wheelchair because the cramping was so bad and then I threw up when I got home. This time, I plan to not eat the day before the test ( or just liquids) and hopefully that will help. Also discussed bile salt malabsorption with the doc as a possible cause of my diarrhea. He said to stay on the Humira at least until we do the scan.

Today was awful in the morning with d but things improved as the day went on. Remembered to take psyllium in the morning! Would like to do it about every other day.


Meds/supplements: 20 mg pred, psyllium, calcuim, l glutamine, iron

Food intake: 2 orgain, yogurt, watermelon, tumeric tea, ginger candy, white rice with chicken and pesto sauce and shredded parm, smoked salon w cream cheese

Pain: 3-8 varied
Anxiety: 3
Bathroom: 15+
Motility: 6.5

Positive things done: bought a bunch of fitness equipment for at home use to stay in shape and build up the muscle mass that I have lost.

 

[tzvia]

9/11

Woke up with a lot of pain and was scheduled for MRE test today. Ate just a bit of yogurt in the morning in prep for the test. Mom went with me, since I had such a bad reaction to the test last time. But this time, all went pretty well. I drank a little more than 1.5 of the Volumen drink.

Meds/supplements: 20 mg pred

Food: yogurt in morning. After test: banana, chicken soup with rice.

Pain: 8
Anxiety: 7
Bathroom: ~15
Motility: 3

9/10

Didn't eat much today....trying to clear my system somewhat before tomorrow's MRE.

Meds/supp- 20mg pred, hyoscyamine,

Food: one orgain, mushrooms with cheese

Pain: 7
Anxiety:7
Bathroom: ~12
Motility: 3

9/9

Meds: 20mg pred, multivitamin, fish oil
Food: I ate a huge amount of rice with sautéed mushrooms with cheese all day.
I'm not used to eating that much rice. The combo of rice with melted
cheese is so yummy! Also had one Orgain
Pain: 7
Anxiety: 5
Bathroom: ~15
Motility: 7

 

[tzvia]

9/13

Pain seems worse ever since hearing about how bad the MRE looked. Had to take Xanax to calm down today, which put me to sleep. I slept almost all day, then woke up and made a big pot of food. Feeling more relaxed now.

Meds/supplements: 15 mg pred, hyoscyamine, Xanax, beano

Pain: varied 4-9
Anxiety: 9 before Xanax 2 now
Bathroom: 10 times
Motility:5

Food: 3 orgain, homemade turkey chili (so good! Tomato free and not spicy)

Positivity: cooking soothed me today. Allowing myself to just take Xanac and sleep it off helped my anxiety tremendously.



9/12

Got the MRE results back via my new Dr who spoke with the radiologist. Basically, I'm walking around with a SBO. About 10 inches of my illium is just about closed, and there is a section of stricture in the jujenum. Plus a fistula that runs from my intestine to my rectum, which the doc says is the cause of so much diarrhea. I'm not sure if my ovary is still tangled up in the mess near my illium. Since pred and Humira aren't working, it's becoming more of a surgical case and I will be having a consultation with a surgeon next week. I just want to feel better.

Today was so weird, I had a beautifully formed BM this morning and I felt pretty good. Then, an hour later the D and cramps started and went for about 6 hours. The D smelled like ocean water. Sorry TMI. This disease is just so strange.

Pain: 7
Anxiety: 9
Bathroom: 15
Mobility: 4

Meds/supplements: 15 mg pred, hyoscyamine, fish oil, multi vit, humira injection

Food: orgain, yogurt, rice with mushrooms and cheese, mashed potatoes, chicken wings (not spicy and didn't eat skin)

Positivity: thank God I have 2 ovaries... In case on needs to come out ( I don't have kids yet), thank God my fistula found it's way to my rectum and not some other place, thankful that my Dr recommended and excellent surgeon- her reveiws online are stellar, thankful for switching to this new Dr who takes me more seriously than my old Dr and who calls me back very promptly each time.

 

[tzvia]

9/14

It amazing how my body can sort of "shut off" the worst of the crohns when I'm out, but then it comes back with a vengeance. I had to go to an event today.... Was worried I wouldn't make it because I had lots of D this morning. But I went, only used the bathroom twice while I was there, and the cramping was tolerable for the most part. But then, about 5-10 minutes after the event ended, I was doubled over in pain, and when I got home the D started again. It's like my body buffers out the symptoms if it has to, but then it comes back afterwards with more force.

Anyhow, I'm still very uncomfortable and I look forward to making an appt with the surgeon soon.

Meds/supplements: I have been really bad at taking my supplements, but I took 15mg pred and a few hyoscyamine.

Food: banana, turkey chili, one Popsicle, orgain, yogurt

Pain: 7
Anxiety: 5
Bathroom: 12 times
Motility: 4

 

[UnXmas]

Hi again tzvia, do you feel like you've made any progress since starting this diary? I know it's still early days. I still worry you're not eating enough. Are you losing weight?

 

[tzvia]

Hi Unxmas,
My symptoms have not gotten any better since starting the diary, but having the diary has been helpful in many ways. It's been personally very helpful to me to keep a record of my bowel movements....and also the fact that I'm even keeping a diary online has deterred me from eating junky food and then having to explain it online! I've also seen how inconsistant I am with my supplements (need to get on too of that!) It's true that I'm not eating much, but I'm also pretty much laying around all day so I'm not burning too many calories. I don't actually have a scale but as far as I can tell, my weight seems stable. It's a little hard to tell because I have that swollen prednisone belly right now.

The diary has helped my to see my current situation more clearly:
Due to the severity of my stricture(s), I'm not sure that I'll be able to get a hold on this disease through diet right now. I would like to excersize, but most of the time I feel like I can barely move. Humira is clearly not helping. Today, I made an appt to speak with a surgeon about a resection... But I plan in keeping this diary through the whole surgery and recovery if that's that case.

How are you doing today, Unxmas? I know you've been through quite a bit recently.

 

[UnXmas]

I'm doing alright, thank you - hoping I can get out of hospital soon!

 

[tzvia]

9/15

Today, I made an appt with a surgeon for next Monday. Honestly, it cannot come soon enough, as I've been having increased cramping and pain. I probably could go back up on my prednisone. But I'm scared to because I know for surgery, it's best to be off of pred. I want to get off the pred if I can, so I can have a better chance for a sucessful surgery. But not sure how to handle the discomfort.....tomorrow I will do only liquids and see if that gives any relief.

I really like my new GI. He called me at 7:56am this morning to followup after talking with me more than three times on Friday. He's very communicative and on top of things, unlike my other GI, who could take several days to return a phone call and seemed to minimize my illness. The old doc once said to me "oh, I'm not concerned about it", regarding a possible fistula on an MRE. ....the same fistula that they found last week on the MRE that is now potentially causing me all of this D.

Meds: 15 pred, hyoscyamine, iron, valarian
Food: chicken broth, turkey chili, rice with mushrooms and cheese, two orgain, artichoke, tapioca pudding

Pain:8
Anxiety:7
Bathroom:12
Mobility:2

 

[tzvia]

9/17

Tough day, running to the bathroom all day with burning D. Did liquids all day until later in the day when I had a spoon of pb with honey and then later some plain shrimp. Feeling drained, sore, just want to feel better already. I still didn't go up on the pred dose but I will tommorrow if things are the same. Having lots of urgency. Was scared leaving the house for just 15 min today. Tons of gas.

Meds/supplement: 15 mg pred, hyoscyamine, iron, multivitamin

Foods: ume sho kuzu tea, orgain, some jello, chicken broth, lots of water, yogurt, pb spoon w honey, some plain shrimp

Pain: 6
Anxiety:9
Bathroom: 20 times
Motility: 2

9/16

Doing all liquids in an attempt to calm things down without having to increase the prednisone. I really want to try and wean off of the pred before my surgery. GI doc said to go up to 25 mg

Meds/supplements: 15 mg pred, hyoscyamine, xanax, probiotic, iron, l glutamine

Food: ume sho kuzu tea, chicken broth, orgain, lots of water, tumeric tea, spoon of peanut butter

Pain:7
Bathroom: 12x
Anxiety: 8
Motility: 4

 

[tzvia]

So.... I got a little lazy writing the daily diary for a few days but I will start with it fresh tomorrow. But basically things have been the same.....BMs 10-20X a day, and lots of cramping and not eating too much.

But hopefully that will all change soon because I have finally set a date for surgery! It will be 10/7 and I'm really looking forward to it! My docs agree that Humira and pred just aren't helping and that I need surgery to deal with the scar tissue in my stricture and my fistulas. My terminal ileum, appendix, and a small piece of cecum will be removed, hopefully without having to remove my right ovary. The surgeon will try to do it laproscopically if it is possible. I can't wait to feel what it will be like to longer have this stricture.

Also, I'll hopefully be able to eat more and gain weight, because now I'm down to 93 lbs.

 

[Hope345]

thinking of you. keep us updated. your posts are very helpful. understand when you just cant..... sending lots of support your way.

 

[tzvia]

9/23

So the surgeon told me since I'm only at 93lbs, she'd like to see me put on some weight before my surgery in 2 weeks. She recommends drinking the Orgain like I am (she sadi Ensure but I don't drink that b/c of some of the artificial ingredients), she also said to eat lots of ice cream and whole dairy, since I handle dairy pretty well. Tomorrow I'll go shopping for some things. Today, I ordered "Absorb Plus" which is an elemental supplement which I will use for nutrition and calories pre-op and post-op.

I thought since I haven't posted it before, here's a little history of my Crohn's:

2000- noticed pain in ileum area occasionally, esp after overeating or eating high gluten (like sietan)

2003- 2006 I'd have bouts of GI issues pop up for weeks at a time and then go away. I'd have incredible abdominal pain and diarrhea and be unable to eat for a couple weeks at a time. I noticed that eating gluten made me feel sleepy (like after eating a bagel) Foods that I could tolerate well during the flares were mint ice cream and papaya. At least once, I think I flare was triggered by eating too much dried fruit and trail mix. I never went to the Dr. because I didn't have health insurance

2007. Worsening symptoms. Constant tightness in ileum area. Cramping. One day it got so bad that I went to the ER because I thought my appendix burst. A CT showed a normal appendix, but thickening of the small intestine that looked like Crohn's. Rather than go to a doctor, I tried to manage the Crohn's by diet....my Grandmom had Crohn's so I knew something about what food were good for her

2008- Worsening symptoms. Horrible abdominal pain and cramping on a daily basis. Several months of diarrhea. Finaly went to a GI Dr, and got colonoscopy which confirmed Crohns because of sever ulcers an stricture in ileum. Dr put me on Predisone which worked fantasically. Dr wanted me on meds, but I was hesitant. Again tried to manage with diet. Ate only pureed food for several months and felt excellent. When I flared again eventually, I'd go on Prednisone which always helped.

2009-2011 - Had off and on flares that I would manage with diet or Predisone

8/2012 - Felt pretty fine one day. Ate a bag of pistachios. The following day, developed horrific pain, cramping, and stopped having BMs or gas. The pain was off of the charts, causing me to scream out in pain. I'm used to dealing with pain but this was crazy. Went to ER and had small bowel obstruction. They said I'd probably need surgery, but tried the NG tube first....removing the contents of my stomach. Stayed in hosp 8 days, didn't eat anything for most of that time. Was given huge doses of Pred. The obstruction cleared up somewhat, and the surgeon still recommended that I have surgery, but I refused because 1) I didn't have health insurance and 2) I thought I could manage as I had been and 3) i was scared. After the hospitalization, I wanted to try and go on Pentasa, I got an RX, but the cost of the med was prohibitive (like $900 mo)

2013- Went to GI doc alot, and would still take pred for flares. Doc really wanted me on Biologics, but I was scared to take them and also couldn't afford them

2014- Got Obamacare! Yay...insured. Finally started taking meds. I wanted the bottom-up approach. Started Entocort- it didn't work. Started Pentasa-it didn't work. Started Humira... it didn't work and actually my symptoms got WAY worse. And this leads me to where I am now.

 

[tzvia]

9/24

Bought some higher calorie foods today and tried to eat as much as I could to get good nutrition prior to surgery. Alaskan wild salmon was half off today...so I bought a tons of that! I want to stock my freezer for after surgery, so the salmon if perfect. Also started the process of getting all radiography films for my surgeon and got a B-12 shot. Not taking fish oil or turmeric until after surgery because they are blood thinners

Meds: 20 mg pred, hyoscyamine, calcium, iron, multivit

Food: yogurt, chicken broth w miso, cottage cheese with pumpkin butter, salmon, aspargus, avocado, potato leek soup, gluten free brownie.

Pain/Cramps: 7-8
Bathroom: 15-20 times
Anxiety: 3
Mobility:5

 

[tzvia]

So I decided I'm not going to write everyday anymore... At least until my surgery which is in eight(!) days. Things have been the same since last time....everyday has moderate to severe cramping and bouts of D around 15x day. In the days after surgery, I'll keep a detailed diary here and hopefully that will help someone else someday who's looking to hear what surgery might be like.

Today I dropped off all copies of radiology images for my surgeon. I gave her everything since 2012 so she can have good idea of what my insides look like. I also started supplementing my diet with the elemental shake "Absorb Plus". I plan on drinking a lot of this stuff post-op while my guts heal so I decided to start drinking it now, just to make sure it doesn't give me any bad reactions like gas. I also bought a bunch of food for the hospital to eat....soft stuff like jars of baby food, boxes of organic broth, applesauce, and peanut butter. I want to bring lots of my own food to the hospital because sometimes hospital food is not the greatest or it's laced with chemicals. Last time I was hospitalized, they have me soup with MSG and jello that had artificial color and flavor. No thanks!!

In prep for surgery, I've also made a few batches of soups and frozen them.

 

[tzvia]

Tomorrow is surgery day! I start the bowel prep in an hour. A weird thing happened. Over the weekend where I developed some kind of infection around my belly button, right where the surgeon has to cut, along with a 101 fever. I had her look at it this morning and she's not exactly sure what it is but she gave me some antibiotics and said it would still be ok to ahead and operate. Im still nervous about it though

 

[UnXmas]

Good luck! I hope it's all fine.

 

[tzvia]

10/9

So..... Surgery went ahead on 10/7. The surgeon removed 9 inches that included parts of the terminal ileum, cecum, and appendix, and she removed one fistula (we thought there were two but she only saw one). The weird belly button infection thing I have is probably just a dermatitis but she did cut on the other side of my belly button. Unfortunately, the surgery could not be done laproscopically because my intestines were very enlarged and ballon-like. So I have a scar from just above the pubic bone up to about 2 inches above the belly button.

I still haven't eaten anything since Sunday. I'm hoping they will let me on clear liquids today. It amazing how much medication they have me on!!! They have me on morphine, tramadole, Tylenol, heparin, prednisone, an antacid, hydrocortisone for itch, and xanax as needed.

Yesterday, I got up out of bed and they had me walking around. Getting up hurts a little, but walking around actually feels great and I've been told it's the best thing to do to aid in the healing process. Today, the doctor said I need to walk around the floor at least 5 times.

Hmm I m sure there is more to write but I can't think of anything right now. Will check back in later.

 

[UnXmas]

Sounds like you have the same scar I have. Walking is the best thing. I hope your recovery goes smoothly.

 

[tzvia]

Thanks! I have been walking a lot

 

[tzvia]

10/19

So I ended up having to stay in the hospital for ten days after my ileocecectomy. My stay was longer than average because I had ileus, which is basically when the intestines take longer than usual to wake up again post-op. The ileus was painful at times because I had gas on the inside that was unable to escape. My surgeon said that the size of my small intestine had complicated things.... It was stretched like a balloon about 7 times larger than it should because of the stricture. This is why I was so bloated before surgery. She said that they should return to normal size within a few months. I also lost more weight because of the ileus, since you are not allowed food until it passes. So I dropped to 90 lbs before being able to eat again.

Now I am staying with my mom for a few days before I head back to my apartment. I'm able to eat comfortably and take nice walks outside. I do not have the cramping pain or D that was present before the surgery. I'm eating nutritional shakes and soft foods like soup, yogurts, avocado and I'm also craving and eating tons of protein. I've eaten a lot of fish, chicken, and even a bit of steak since I got out of the hospital. I'm trying to chew chew chew everything really well. As of now, it difficult to tell if anything I eat is causing gastro pain because I have pain where they cut me. In other words, I can't tell the difference between pain at the insicion and inner belly pain from food right now. My guess is that it's all or mostly incision pain. Will know more in a couple weeks as things heal

I've weaned down to 10 mg prednisone and will followup with GI in a couple weeks about what to do next. Not really into the idea of Biologics. I might see if I can now qualify for the SSI trial now that I am stricture-free.

 

[tzvia]

This was me right before surgery. I had lost a lot of weight and muscles and was very bony. Yet, my belly protruded because my intestines were so enlarged. I weighed around 95 lbs here.

Will continue to post pics as my body changes. The belly protrusion has already gone down somewhat since surgery and I am gaining weight.

 

[tzvia]

10/22

Post-surgical update.

My cramping has been reduced by about 99%. Went from 15 BMs (diarrhea) a day down to 1-4 (solid). At first the BMs were small and skinny, but now they are getting quite large. Haven't seen anything like it in years! It's a little hard pushing out the solids BM's, since the insicion is still healing and bearing down to push creates a pressure on the cut, so I've added a stool softener to I don't have to strain so much.

I'd say the surgery has been a great success so far! I haven't gained any weight yet, but I'm eating a lot. Feeling pretty good : )

 

[tzvia]

10/29

Update

Today I had my surgical followup visit and everything seems to be good! Although I was worried that my incision looked a little irritated, the docs assure me that it's healing great and not infected. Although I still have odd pains (muscular abdominal pain and pain at surgical site), the docs assure me that it's normal and just part of healing. Also good news in that I gained 6 pounds in 2 weeks! Weight back up to 95 : ) I'm still feeling good.....no cramping pain and 1-2 formed (beautiful) stools per day! Only one time since surgery I've had D and that was after eating 1/2 box of almond/rice crackers....won't be eating those again!

I'm almost done tapering off pred (I'm at 5mg) Spoke with my GI and he said as long as I feel good, he's ok with having me off meds totally as long as we do a colonoscopy in 6 months to make sure there is no more inflammation at the ileum.

So....scared to say it officially just yet but I might be in "remission"

 

[UnXmas]

Congratulations! I'm so glad something has gone so well for you!

 

[tzvia]

Today is 5 weeks post op and here's a picture of the scar. My BMs are great and Crohn's pain is still gone : ) However, since I've started lifting things again, my abdomial muscles are very very very sore. Feels like I did about 1000 situps.

So far, I can eat about everything without issue except coffee gives me loose stools.

I have gained 15 pounds!! I don't want to gain much more than that though...

 

[UnXmas]

15lbs in 5 weeks? I wish I could do that! What's your secret?!

 

[tzvia]

Shamefully, I have been eating a twix bar everyday, sometimes twice a day.
And pizza.

 

[UnXmas]

Nothing to be ashamed about. I've been eating chocolate every day lately. And pizza every now and then - home-made ones, they're the best.