Afidz journey log

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afidz

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Over the next 6-8 months, my life and everything in it is going to start drastically changing. I was thinking that instead of creating multiple threads about updates and what have nots, that I would just have one thread.

So- Update #`1

Well, on Monday I am starting Remicade. For some reason, I am very nervous about this change. Once its all said and done, I am sure I will be fine and on my way to feeling better. My joint and back pain are through the roof. My Crohn's symptoms aren't too bad, I have been nauseous for the last 2 months and I have had some cramps, some acid refulx, but as far as Crohn's goes, its been ok.
So, once I have my first Remicade infusion, my rheumy will start me on an extreme diet to where I will lose about a pound a day. I will lose about a pound a day for 40 days and then the remaining 20 days will be used to introduce the a normal diet into my day to day activities. If the weight loss program is successful, I will have lost enough weight to have the next surgery that I so desperately need. I feel like once I have that surgery, my life will be better. I am in this horrible viscous cycle that I can't find a way out of, and fixing my hernia is the first step to fixing me.
I intend on going to inpatient rehab after surgery, whether I can get the surgeons to agree to write the order is a different story. I want to spend a couple weeks in rehab to start to rebuild core strength in my abdomen and general muscle loss of being in bed for the last 2 years. If I can't be inpatient, at the very least, I will be an outpatient. I NEED help rebuilding my body.
If I am still over weight at that point, I want to do the extreme diet one more time. With my problems with recurrent hernias and to avoid getting another hernia, I need to be at a healthy weight. But, I will judge that when the time comes.
I have discussed this plan with my boyfriend and close friends in depth. I feel like I have a really good plan, but I am worried that I am being naive in it all. I just want my life back. Thoughts anyone?
 
I think that is wonderful plan of attack. Although it may seem overwhelming to you but I believe you can accomplish anything you are determined to . Personally I tell myself all the time ( wether you think you can or you think you can't, you are right). So best of luck to your road to recovery.
 
Thanks. This is it. I'm pulling out all the stops and taking charge. If this doesn't work, if I don't come through exactly the way I'm planning , I don't think I'm going to get another chance.
 
I think anyone can do what they set their mind and heart to. Good luck with your new journey!
 
Good for you afidz. Do make sure that you are monitored well by health professionals as restricted eating can be very difficult. When I was doing EEN, it helped to not focus on what I couldn't eat and to focus on other things with the understanding that, although I was very ill at the time, the experience was an opportunity to learn more about myself and would hopefully lead to improved health. Thinking about the type of support that you believe you need is a great way to ensure success. :goodluck:
 
Good luck afidz, so glad to see that things may finally be starting to turn for you. You've had way more than your fair share to deal with and I sincerely hope that this is the start of a new, healthier, happier time for you. We're all behind you and rooting for you.
 
So great to her such positive vibes in your post! You deserve such great things and this new course of action seems to be the right one for you. Good luck.
 
At my rheumatologist ' s office for my first remicade infusion. So far everything is going OK.
I am HLA-B27 positive. What that means as far as the arthritis goes, I don't really know. The blood work that they did indicated that my thyroid isn't functioning properly, they are putting me on a thyroid med. They said that has probably contributed to my weight gain add well as the excessive sweating . I was given an IV steroid because my crp was really high. My white blood cell count is pretty high too, but they said because my CRP is so high, it could cause my white blood cells to spike.
They are kind of apprehensive about starting me on the diet this week because of how awful I feel, but I think I'm still starting it this week.
 
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Maybe it's the steroids they gave me during my infusion, maybe it's remicade (maybe it's maybeline) but I feel great. No pain killers. No advil.
My head is clearer too. I feel like I've found a great doctor. When I talk to them about my 99 problems, they understand. They understand how hard even the simplest things can be for me. I feel like between me, my GI and my rheumatologist, we are a team and I'm not fighting alone anymore. Together, we are going to get my body ready for surgery. I have such a long road ahead of me, but I'm not so stressed out about it. I can breath a little bit.
 
You had me chuckle at the Maybeline line! Whatever it is I'm sure you'll happily take it and I'm glad your body is currently cooperating better and hopefully will continue as you go down this long road.
 
Yay afidz!!! Glad to hear that you finally got someone to work with you and that you're no longer so stressed!!! I hope this means things are at least getting a little easier on you...
 
I am proud of you- you have so much courage and determination, that I don't think that anything is going to stop you this time! Sending the best of luck, prayers, and hugs!
 
Thanks for the support everyone, it means a lot. I am nervous about the all the changes, but I excited for the possibility of feeling better and possibly have surgery soon. Like I said, I have such a long road ahead of me, even after the surgery I sill have a long way to go. I am just glad to finally be at the start line, its been a long time coming.
 
My Crohn's symptoms have gotten worse, but thats not saying much because they weren't bad to begin with. I have started to fear food again, I have been getting cramps after I eat and all I want to do is throw up. No D, but I am not constipated or having a problem with constipation like I normally do. I think tomorrow is going to be a very laid back, low fiber baby food kind of day.
 
Its been 5 days since I started remicade. I haven't had any joint pain and my energy levels are definitely up. I feel so optimistic about my health finally improving. My boyfriend has noticed a change in my mood, but he is trying to keep me grounded. He has seen me get like this before, and then something goes wrong and I come crashing down and nothing he or anyone does will pull me out of that depression. It's hard for him to watch.
I started the diet yesterday. I had to get this body scan that showed me how fat I am, made me really sad, but that's why I'm doing this. Sorry I'm kind of jumping... but I started taking a thyroid med and since then I've lost 2 lbs, and then I started this diet and lay an additional 2 lbs. I am so optimistic about everything. In 6 weeks I will be surgery ready!
 
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There are misconceptions about how sick I am. Not just here, but with my family as well.
In 2009, I was reduced to skin and bones. I was flaring really badly and almost lost my life. However, I went into remission and gained quire a bit of weight back.
Now, I am not in remission, but my Crohn's is actually only mild, if not considered back in remission. But I am dealing with severe manifestations of Crohn's as well as very severe complications of a complication that I had in 2008. I have been dealing with those things since 2010 and for the most part, I have been laid up I would say 60 % of the time and when I was out of bed, I still wasn't able to do much. So my lack of activity is what brought me to this weight
 
I've lost 9 lbs!
I think it's a combination of the diet I'm on and the thyroid med. Tomorrow is my next remicade infusion. I feel so great. My boyfriend says he can tell the difference. I have stopped complaining and I don't scream in my sleep anymore. 22 more lbs to go before I can meet with the surgeons again!
 
Awesome news Afidz! :D I know you can do it!

RowdyRowdy it's a common misconception that all people with Crohn's are underweight. remission is possible and other complications are possible as well. In this case it has been because of constant surgeries, one right after the other and an out of whack thyroid but there are many other members who mention being overweight and many who are at a normal weight even with active disease.
 
Feeling better and losing weight, you are on a roll!!! Great job, so far, and know that you can do it if you have gotten this far!!
 
Yeah! Afidz I'm here rooting for you. Hope the remicade continues to improve things and the thyroid meds as well
 
Well.
I fell off the wagon today.
It just started out bad. I woke up 5 minutes before my scheduled remicade infusion that takes me no less than 30 minutes to get to. I woke up feeling like crap. I want to throw up and I felt like I was going to explode. My back and neck were stiff and my fingers were hurting. I don't know what happened between yesterday and today, but whatever it was, my body was not having it.
So feeling like crap led me into feeling depressed. Haven't been able to shake the mood all day. The weather outside has been stormy and cold- don't get me wrong, I live in Texas, I appreciate the rain. But after I got out of my appointment all I wanted to do was eat bad things and feel sorry for myself in my jammies and a comfy blanket. Forget the fact that its midterms week and I haven't started studying yet. So. I cheated on my diet. A lot. I ate double of the amount of calories that I am supposed to have..at least I am assuming , I didn't count. but thinking about it, I really didn't do THAT bad. the calories that I went over were with protein, not sugar and fat. So maybe I am not stepping to far backwards.
I am still depressed, I still want to eat my weight in all things chocolate and caramel. But I am hoping for a better day tomorrow.
 
So did you miss your infusion? Did you reschedule? Hope things get better soon. As for the diet, just a bump in the road, don't let it get to you. :)
 
No, I still got the infusion, thankfully.
I think I'm putting too much pressure on myself to lose this weight. But bigger and better things are waiting for me once I get healthy. This diet is very strict and I just don't have the discipline to follow it % 100. But I have to be proud of myself for losing 9 lbs, that's a huge step forward. My pee is completely clear because I only drink water or some variation of water, really opened my eyes to the crap I was consuming before
 
I. Feel. Awful.
I started my period today so that might be why, but this feels different. I haven't been able to eat today. I've been running to the bathroom. Been very crampy (and I get really cold when I'm cramping). I want to throw up but I can't.
On another note. Its halfway through the semester, I just happen to pay attention to a girls shirt in class today. It was a "girls with guts". (An organization for women with Crohn's and UC) so of course I started talking to her. It was nice to meet someone outside of the forum that knows what its like.
 
I still feel pretty crappy, but its not as bad as it was on Friday. My fingers and toes hurt a lot, I've slept so much this weekend and still don't feel rested and I lost 4 pounds in one day. My period isn't over yet so I'm giving it a while before I call my GI. It's making my diet complicated though because I'm limited to produce and white meats, if this flare continues I will have to stop the diet so I don't get malnourished. I'm going to ask the rheumy to check my levels next week just to see where I stand. I really don't want to stop the diet though, I'm so close to being able to schedule the next consultation, only about 15 lbs to go! It's so complicated trying to balance all of the different aspects of my health, my school work and everything else going on in my life, maybe I'm just pushing myself too hard too fast.
And on that note, mentally, this diet is very challenging. I'm incredibly too hard on myself. I started seeing my rheumy 5 weeks ago. In that 5 weeks I've lost at least 13 lbs. That's an incredible feat for anyone. But because they tell you that you can lose a pound a day, that's what you hold yourself accountable for. There have been days where I didn't lose a pound or days that I just needed to eat more than 500 calories and I would beat myself up the next day. I'm not starving myself, I'm not hungry when I decide to go over 500 calories, I just want to eat. But I am human. I can't beat myself up over small stuff. I need to be proud of the weight I have lost and use that as positive motivation to keep in going instead of negative motivation when I'm down on myself for eating an extra piece of chicken.
In general, I am feeling better. I'm not as depressed as I was and I feel like things are finally going well for me and I am actually on the road to a better life. Andrew is such an amazing support system, I don't care that my family is all but supportive.
 
Hey guys, sorry its been a while. Life has been crazy (and depressing)

2 weeks ago, my 5 month old mastiff puppy passed away. We don't know, and probably will never know what happened. Our best guess is that he had a cut on his paw and stepped in goose poop the day that we took him to the lake and he got an infection. He died from septicemia. It was absolutely devastating to my boyfriend and I and it is still hard for us to accept. He went so quickly, we didn't expect to lose him, let alone as quickly as we did. He brought so much love and energy into the household, he is dearly missed.
apollo.jpg

Its hard to tell how well my diet is going. I retain water and bloat so easily, I sometimes have a 7 lbs difference from day to day. However, I measured myself on October 28, and I am down 7.5 inches since then. The diet ends on Friday, and then once I am off of it for 6 weeks I can do it again.

As for Crohn's, I am probably in remission :dusty: . The only problem I have is severe flare like PMS symptoms when I get my period, I still have to figure that out.

As for Remicade, it has completely changed my life. Almost all of my inflammation is gone. I have energy and stamina that I didn't think I was ever going to get back. This weekend I helped my boyfriend clean the garage for 2 hours straight with out sitting down once. Sometimes I don't even recognize myself by my actions. Its nice to start getting my life back. My boyfriend says that I am a completely different person, and that he is falling in love with me all over again. (awe shucks)

anyways, thats me for right now.
 
Sorry to hear of your loss of your pup - I understand how special our furry buddies are!
My personal response to losing a dearly loved dog was to "get back on the bike".. As a result, we currently have a beautiful affectionate 4 year old cavoodle.
Maybe, when it feels comfortable, think about getting another dog? I'd struggle without mine.. xx


HD
 
So sorry to hear about the pup. They quickly become family members. Happy remicade has been a life saver though. Hopefully more positive news for you.
 
Reading my last post makes me cry. I miss that sweet puppy so much. But, life has to move on.


And it did.
10696276_10153364390837907_7147034524028165932_n.jpg


Everyone, meet Daphne. She is a FIRECRACKER. She is so completely different than Apollo As I type this she is barking and growling at my cat. Apollo didn't have the courage to even look at her, let alone bark at her.
Overall, I am coming to love her, we have only had her for 6 days. It will take time,

I don't feel like I am in a healthy mental state, but I don't really know why. I've avoided talking about anything to just about everyone I know. Everyone has there own problems, I can't begin to expect them to deal with mine. But at the same time, I am really tired of pretending to be happy...

As I sit here and type this, several minutes have gone by. Several thoughts have gone on. Maybe in the 7 years that I have had Crohn's, maybe I am just starting to accept that this is me,

When I say out loud " I have Crohn's" I just get really sad. But I don't really understand where my feelings come from. I have been dx for 7 years. I grew up knowing what Crohn's is. Hell, I just said "ok" when the doctor gave me my dx.

I just... I don't want to be sick anymore... I don't want to go to a restaurant and think about the consequences I will face if I eat. Am I done being in public after this? How badly am I going to bloat after eating this? Is the pain I am about to go through worse than being hungry? And this while in remission!

Its SO ****** having to take things into consideration just to eat!

Then, there is the hernia. The bain of my existence, the thing that really decides if I am going to eat or not. I have been in so much pain over the last few days. I feel like if one person brushed up against my abdomen in the wrong way, I would be in fetal position begging for mercy or in a medically induced coma so I wouldn't have to deal with this bs.

I know it sounds like I am complaining a lot. At least it does to me. Its just that my life has been so complicated the last few months, with no one to talk to, I don't know how to deal with my own stuff, let alone other people.
 
Yes, you have been through a lot these last few months afidz. But, we've all been here too and will continue to be here if you need us. I know that I'm speaking for many on here. If you need to talk, I'm just a pm away. Hang in there. :hug:
 
Life has been a whirlwind lately.
2 days ago I had a bunch of abscesses break through my skin. I went to the doctor today, I am going on antibiotics and hopefully they will clear on their own.
I have lost a little bit more weight, I have between 16 and 18 lbs left to go. I am restarting the HCG diet again on Christmas Eve, hopefully I will lose the remaining weight during that time period. I am at a witts end with my hernia. My GI examined me today and said that ALL of my muscles are under my organs. So thats fun.
In other news, I submitted my petition to graduate a few weeks ago. I can't believe it. I am going to applying to University of North Texas to get a bachelors in Alternative Dispute Resolution in the upcoming weeks. By the time I am able to go back to work I am going to have a steady career. I am so EXCITED.
Thats about it for now.
 
Started the HCG diet again a few days ago. I only lost 12 lbs last time and I ended up gaining a few of them back. But its hard to tell whats far and whats water. There are some days that I retain an incredible amount of water. During the courses of my last period-about 10 days all together I gained AND lost 12 pounds. When I try to talk to doctors about this, they think I am making excuses for my weight. When I finally do lose enough weight to make an appointment with the surgeon, I am terrified that the day will come and my body will decide to retain water again and he won't want to schedule the surgery because I haven't lost enough.
Anyways, I am hoping to lose more this time around on the HCG. It goes for 6 weeks. I lost 2 lbs since yesterday, but I am sure half of that is water weight.
Wish me luck!
 
Long time-no post!
I stopped posting for a little while. But I am up late and stressing out.

I want to go back to work SO badly. I want to marry my boyfriend, I want to have kids, I want to move into a bigger house. I want. I want. I want.

I am tired of wishing and wanting.
I can't have any of the things I want until I get my abdomen fixed.

I am doing ok on the diet. All together I have lost 18 lbs since October. about 14 more to go until I can schedule my consultation to see if they will operate. I have a little less than 2 weeks until the end of my diet. If all goes as planned, I should be around my goal weight around that time.

I know that 18 lbs is something to be proud of. I know I am on the winning side of my weight loss(I have lost more than I have left to lose). But I feel like I am carrying the weight of the world on my shoulders. Everyone is depending on me to lose this weight an have this surgery. When did MY health become the center of everyone else's world?

I tried explaining to my mom last week how difficult certain aspects of my life are. I also tried to explain to her how much healthier I am now, how much better my life is, how much closer I am to surgery. All she could say was to try harder, and not in the encouraging way. In the "Clearly you are doing something wrong, try harder" kind of way. Given my history with my mom, I should receive an award for not punching her. I tried telling her that its easier said than done. That I have come really far and I still have a very long road ahead of me and its like she didn't even hear me. I feel like no one is actually listening to me. Maybe part of it is my fault. I don't exactly tell people how sick I am or was. No one knew that I couldn't get out of bed on my own or that I couldn't walk 10 ft without running out of breath or that going from my bed to the couch made me so tired that I had to take a nap. To be honest, I don't think anyone can really handle it, the real story, that is. I think another problem is is that I hold myself to healthy person's standards. So if I am holding myself to those standards, then so should the people in my life. By not being honest with my friends and family. I put myself into this situation. But seriously, when you tell someone that you are chronically sick, things are never the same. Your friends disappear, and your family treats you like you are going to drop dead at any second. Who wants that in their lives?

Clearly, I had a lot more on my mind than I thought. This post is all one jumbled mess, but my head is all over the place right now.
 
I want to tell you how proud I am of you and how thankful I am that you're doing so much better than you've been! I also want you to know that I'm still here for you no matter what. Sending lots of hugs and support your way.
 
Try harder!seems obvious your trying really hard,losing weight when your ill and being put under pressure by friends,family and doctors isn't,t easy and I,m sure the bucket loads of meds won,t be helping.the friends thing is just life,people move in and the fakes move on out.its tough but I,m sure your keeper of secrets helps,our four legged friends help at the most desperate times.that,s my sister,s description of our lab Stanley he knows everything.good luck all the best
 
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