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Hello whoever is reading this! 

I was recently (officially) diagnosed with Crohn's disease after getting severely sick last summer and going through rounds of medications until my doctor finally started giving me Humira. I started going to college right after taking humira for the first time!!! I lost about 28 pounds, am extremely weak and tired all the time, haven't had a period in 8 months, and my hair is falling out. What do I do? I know now what I can and can't eat (I avoid anything with gluten, dairy, and high amounts of sugar or fiber or starch or oil or spice) and saw a nutritionist for a while, but now I can't see her anymore. My mom keeps telling me I need to gain weight (I'm 17, 5' 4" and 98 lbs) but I don't know what to do. I'm also dealing with some really bad circulation issues and have almost passed out several times (my blood pressure is 80/60). I used to eat about only 600 calories a day when I was really sick, but now I've worked my way up to about 1400-1500 calories a day. On days that I don't feel good or are dealing with a flare up, it's more like 800 calories. On one hand, I already feel like I'm eating way too much and I'm comfortable where I'm at with eating, but on the other hand everyone tells me I need to gain at least ten pounds. I'm really scared that I could be damaging my ability to have a child in the future or damaging my body really badly, but I just don't know. I don't want to eat more if I don't have to, I hate feeling undisciplined or unhealthy or out of control. I'm so embarassed because I don't work out since I'm so weak now, but I don't want to gain weight and get fat. If anything I'd like to put on muscle. I just don't know where to go from here. 

I could really use some help. Any advise is appreciated. Thank you! 

Reply posted for Eveylime.

Sorry I haven't seen this sooner.  I have been on Humira for almost 2 years.  At first I was wondering if it was really working.  I have been on all the medications befor this.  I was on steroids that caused me to gain a tone of weight.  When I started Humira the only thing I was able to eat was steamed carrots, mashed potatoes and mc chicken sandwiches.  Highly highly processed food.  My hair was thining and lost it's curl and my finger nails where becoming very deformed and cracking.   The reason I'm telling you is there is hope.  I started seeing real progress with Humira about 6-8 months in.  I did have to make a change to my reflux medication to help with not absorbing vitamins.  That sounds like a major issue for you.  Remember with the inflammation in Crohn's that you can pass food through without absorbing the nutrients.  Are you pressing your dr on these issues?   I am hyperingaged with my drs. Most of the time they like it, other times not so much.  I try to keep myself in there thoughts at all times.    This does get better, but you need to find the right ballance with your dr of food and medication.  This is not something that is a quick fix and will be flar ups.   I am eating some vegetables now.  I have to cook the life out of them, but found some that work. Diced steamed cauliflower has worked lately.  Still eating the carrots.  It is a trial an error thing but the thing I found is the more I dice and the more I cook the easier time my body has to absorb it.   I read you post and it made my cry.  I remember being in your shoes except I wen up to 327 lbs from all the medications and limited food I could eat.  I have since lost nearly 80 lbs and the healthy way. Most chicken is out of my diet unless it is organic and farm fresh. I do eat lots of eggs.  Scrambled is the only way.   I have had a problem with dairy since birth.  I game drinking Lactaid hole milk now.   I'm am sorry that this post is all over the place, but your issues really touched a nerve with me.  Feel free to ask me what ever you want.  Keep in mind I am a 52 year old man, so there will be some questions I won't have input on.   The one thing I would say in all of this is make sure you have a dr you are comfortable with and can I gauge with daily if need be.  There are lots of great dr's out there.  The one that is good for someone else may not be a good fit for you.   I really had to push my current one.  Once she new I was highly ingauged she opened up like gang busters.  Get a good gi dr and a great GP.  Feel free to reach out to me at anytime.  I promised to be more focused and dialed in with my next respons

Reply posted for Eveylime.

Sorry, not sure what happened but my post got cut off.  Here's the rest of my original post that got cut off :P

***And you know, I actually would like to ask you for some advice  You had mentioned that you are currently taking Humira (which to my understanding is a biologic).  I have been on Apriso (mesalamine), Bentyl (dicyclomine), Prednisone, and Nortrytiline.  I've been on all these meds since beginning of November.  But now my PCP is suggesting now I get put on biologics, but I a terrified to get on biologics.  How has Humira helped you?  What does it help and what does it not help with?  Do you get any crazy side effects from Humira?  I got sad when you told me they put you on Humira, especially with how young you are!  Have you taken pills before being put on biologics? 

I hope you & your family are hangin' in there with all the chaos ocurring in the world, but stay safe, be blessed, take are of yourself, and I will continue to keep you in my prayers!!! 

Reply posted for Eveylime.

Hey you! 

I apologize that I am replying a month later but life's been a bit chaotic on top of this lovely COVID-19 emergency! 

I, am, SO HAPPY that you have been praying and clinging onto God duirng your battle with this nasty disease! I promise to you, a strong relationship with God has really helped me get through my hardest days.  And I am also happy that you are taking the right steps to taking care of and being good to yourself :)  

Regarding your question on relationships & IBD, I don't think I'm the best person to give advice just because I was lucky and was already in a relationship when I came down with this illness.  In fact, my husband & I were engaged during the worst of it and God blessed me with an amazing husband that helps take care of me, understands and takes the time to uderstand my symptoms, and how I feel on the daily.  And I thank God everyday for my husband because I know God blessed me with him and with God and my husband, I can get through anything.  But I can tell you this: this illness does not make you less worthy or less of a person.  And do not let anyone make you feel that way because of your symptoms and how you're feeling; because your symptoms do NOT define you or your worth and don't let anyone make you feel you it does define you!  Find a guy who is going to appreciate and love you for YOU - (and that means all of you) and, find a guy that is going to support you through anything and everything!  Dr's visits, ER trips, specialists visits, etc.  But that's crazy that you brought that up because I had actually told my husband about you and us chatting on here, and I told him my heart feels for you because I couldn't even imagine dating while dealing with this illness  another thing my husband and I try to do is make the most out of our time and the situation at hand.  For example, when I had lots of procedures and appointments to go to when things first started getting bad, since he goes to 95% of my appointments with me, we'll try and make the trip fun (i.e. go to breakfast or lunch after appointments, go walk around the mall, grab coffee or something and sit at a park, or have a movie day the rest of the day).  That also helps tremendously with keeping your mind occupied and busy.  Anything to be positive or make the situation lighter, that's what we'll try.  I know how frustrating it is when people comment on your weight too!  "You are too skinny, you need to eat more" or "Omg, you're so tiny! Looks like you could even shop in the little girls section".  Even my mom would give me crap about my weight and would ask me if I was anorexic, bulimic, or if my husband was starving me!!!!!  Now granted, sometimes people make a comment because they don't know what else to say, but for those that make unecessary, rude comments, that gets old real quick.  And after a while you do become self-conscious of your looks... even for me.  It's even been hard shopping for clothes because I can't really wear my favorite style of clothes because I'm so small and the clothes are too big on me now :/  

How did your second opinion go?  Were you still able to see that doctor with all the COVID19 craziness going on?  I really hope you were still able to go and get the help that you need!!! I will keep you in my prayers dear!!! 

And you know, I actually would like to ask you for some advice 

MrsCruz19
Joined Jan 22, 2020

Reply posted for MrsCruz19.

Hello!

Sorry it took me so long to respond, but I took your advice. Praying helps so much and I really appreciate your advice! I also realized sometimes it is best to just slow down and breathe. But now coronavirus is spreading to my campus, so I may have to take online classes, which is just another burden. But, who knows! It may be a blessing in disguise. 

How do you handle relationships and dating with IBD? I want to try to find someone who understands me and I can spend time with, but I'm terrified that they won't understand my diet, lack of energy, days of pain, and general struggles with daily life. I don't want to be judged because people in the past have told me to "just get over it" or "just eat", and my friends constantly make jokes about how skinny I am. While I find most of them funny and just laugh with them, it is starting to make me feel very self conscious. I know I am very underweight, but there's nothing I can do about it! But it makes me think about what other people see when they see me. 

I don't know, I pray to God that my situation with eating gets better and that the virus stops spreading in my community. With taking Humira, I'm very likely to get sick. Also, I'm still struggling with fatigue that is getting worse and shoulder pain, and I've noticed when I breath in sometimes, there can be a very sharp pain in my lower right abdomen (where the inflammation was last time, which is slightly concerning!). I went to get a massage for the pain in the nerves in my shoulder and arm, and the massage lady told me that my problems were due to the lack of muscle in my body. However, I'm going to see a doctor soon to get a second opinion on my shoulder, lack of period (still!!!!), and general symptoms. I've also noticed that eating is getting worse, and what little appetite I had is decreasing. While things are getting a little worse, I know that my life is in God's hands, and there are other people who have it way worse than me. I am just glad to be alive and I am glad I can do what I do :) I pray that things go well for you too! Thank you again for your advice, and I am so glad that there is a community of people who get it and are willing to help. 

Reply posted for Eveylime.

Hey!

I'm so sorry for such a late reply!  Life's been crazy lately!  

I would definitely give any creams, balms, or lotions a try - especially for the joint pain.  And that's awesome!  Thank you for your prayers!  I always tell people that prayers are the best thing people can do for me! 

Honestly, I had to do my own research because for the first year I was sick, my providers at that time didn't care and did a horrible job with my care (they never even diagnoised me within a year of them treating me).  My condtion declined so quickly that my husband and I had to move up our wedding date so he could put me on his health insurance plan (it's a PPO and a way better plan than the one I had) to see better providers.  So in the meantime, I did hours and hours and hours of research; and LOTS of trial and error with different foods, meds, lotions, balms, etc. to see what is going to work for me and my symptoms.  And I'll be honest, there are some days that are WAY harder than others, and I feel so down and depressed.  It's miserable sitting at home watching everyone progress in life while I sit at home sick, seeming like I am just wasting away.  So I just try to get ahead on my homework, read more books, take walks, organize stuff around the house (when or if I even have energy), play video games, hang out with my cat, talk to family on the phone, or go out and walk around like Target or Walmart then come home (but that can be a nightmare in itself with needing to go to the bathroom all the time).  But you know what?  The greatest thing I have found to really get me through is spending alone time with God along with the support of my husband.  Every morning (since my body insists on waking me up early and keeping me awake) I read and study my daily devotional, write in a journal after reflecting on the devotion for the day, and pray.  And I know it can be hard dealing with a diagnosis of an anxety disorder... and being put on meds to control anixety are HORRIFIC, along with dealing with all the other symptoms and issues we are dealing with... My GI has me on an anxiety med for my U.C. symptoms even though he says he's not prescribing it for anxiety, but it's still nasty stuff.  My best advice is to seek Peace from God, do be afraid to be selfish and indulge in self-care, and surrond yourself with any person, place, or activity that is a postiive influence and does not bring you stress or anxiety.  I've learned the hard way that keeping anything negative in your life is a huge downer.  And as much as you want to make plans or try to make other people happy  - always think about yourself and how something will affect you.  

Btw, with the yoga, perhaps maybe it may be a bit too much at first.  Maybe you can try to do smaller and more simpler stretches that won't tire you out too much.  I know if I strecthed too much it makes me super shakey, sore, and weak as well (as I am a whopping 94 lbs).  Also, just soaking in a bath is really relaxing too!!!

I am so sorry that you are feeling this way and are going through this.  I know it is hard and you feel alone, but you are never alone.  Not only do you have a big community of people that are suffering from the same or similar condition, but God is with you.  And he is bigger than anything!  Hang in there & stay strong, dear! :)

Reply posted for MrsCruz19.

I definitely haven't tried any creams or lotions for joint pain, but I feel like that's a great idea that I need to try! And I am religious too, thank you for your thoughts and prayers :) I pray that you continue to find relief and comfort! I'm impressed by how much you know and how you can deal with it, I never even thought of CBD as a solution... I've currently been having a really difficult time and it's really getting me down. Usually I can just push through it, but after meeting with my counselor she diagnosed me with General Anxiety Disorder and ruled out anorexia nervosa as it's caused by an underlying condition (my crohn's). I don't know how to deal with this new diagnosis and I'm really embarassed about it. Mental disorders do not bode well with my parents, so I'm terrified and really upset. On top of that, I'm trying to apply for disability accommodations for a kitchen where I'm living next year, but due to issues with paperwork I may not be able to cook for myself. It's been such an issue as there's less and less food that I can eat. I did the yoga class yesterday but I was really shakey... I'm just so tired of feeling weak and frail and constantly being reminded of how I'm limited. I would just like to be able to make food that I can eat and function normally, I'm so tired of the fatigue and pain interrupting everything. I don't know, maybe I just need to be more optimistic. How do you deal with the mental side effects from it all? 

Reply posted for MrsCruz19.

Thank you!  It has definitely been quite the journey, but I can see the light at the end of the tunnel! I don't know how you do it - sitting in a classroom setting and having to just take those miserable symptoms I couldn't do it. I find that resting a lot and keeping myself busy with small, calming activities helps during flare ups as well.  That's great you signed up for the yoga class!  My nutritioinist suggested I do breathing exercises and stretching to help with getting my body up and going; and boy does it help!  I think you will really benefit from the yoga class :) 

To be quite honest, the best thing I have tried and continue to use is medical cannabis.  I have been prescribed Ondansetron, rizatripton, promethazine, metoclopramide, and marinol.  The only medication I have listed that has helped somehwat is the marinol, BUT, that is a pharmaceutical synthetic THC medication that helps with nausea and gaining an appetite.  All the other prescriptions made my nausea worse! Or there were nasty side effefts I had.  But the medical cannabis helps with my nausea, it makes me hungry because it gives me the munchies (heehee...), and this may be hard to believe, but it actually calms my abdominal pain and my bowel movements.  Because cannabis also targets inflammation, it also helps calm my intestines.  Rubbing the CBD cream or lotion on my lower back or wherever I get joint pain with a heating pad while resting is LiFE <3 I also like soaking in a bath with Epsom salt.  That not only helps with my joint pain but it can also helps with the hemorrhoids (sorry, I know, TMI...lol) I don't know if you are spiritual or not, but I will pray that hopefully you are able to see a better doctor!  I've been there and it sucks when your doctor isn't meeting your expectations.  

Have you tried using any types of creams or lotions for your joint pain?  

Reply posted for MrsCruz19.

Wow! That's so awesome that you're able to pursue your masters, and it definitely seems like things are going pretty well for you! Usually when I'm fatigued I try my best to just sleep, rest, or just lay down and stop being active for a little bit. When I deal with stomach issues, the best thing I can do with classes and such is grin and bare it, however I have had to ask to use the restroom many times during classes. Most of my symptoms are pain and nausea related, which I use Tylenol and prescribed zofran for. I avoid NSAIDs at all costs because I know how damaging they can be. Usually when I'm dealing with a flare up I just try my best to relax and focus on my studies, homework, or do something to distract myself. When I deal with joint pain, I just take Tylenol and try to push through it. I signed up for a yoga class so hopefully that can help my joints, and I don't run anymore to avoid causing more pain/nausea than I have right now. Hopefully I'll be able to get a new doctor soon to help me out with these issues. How do you deal with symptoms of pain/nausea? 

Reply posted for Eveylime.

Wow! That's so awesome that you're able to pursue your masters, and it definitely seems like things are going pretty well for you! Usually when I'm fatigued I try my best to just sleep, rest, or just lay down and stop being active for a little bit. When I deal with stomach issues, the best thing I can do with classes and such is grin and bare it, however I have had to ask to use the restroom many times during classes. Most of my symptoms are pain and nausea related, which I use Tylenol and prescribed zofran for. I avoid NSAIDs at all costs because I know how damaging they can be. Usually when I'm dealing with a flare up I just try my best to relax and focus on my studies, homework, or do something to distract myself. When I deal with joint pain, I just take Tylenol and try to push through it. I signed up for a yoga class so hopefully that can help my joints, and I don't run anymore to avoid causing more pain/nausea than I have right now. Hopefully I'll be able to get a new doctor soon to help me out with these issues. How do you deal with symptoms of pain/nausea? 

Reply posted for Eveylime.

Hey Emily!

It's very nice to meet you! I know a lot of the time you may seem alone (trust me, I feel alone a lot of the time too), but always know you're really not!  Because there are people out there that you can relate to and want/can understand you.  Ya just gotta find 'em =]  

That is so awesome!  What a fantastic major to pursue and an excellent goal to set for yourself!! That is so great that you want to help others that also suffer from the same conditions.  I too, hope to do something that can help others with their conditions and their daily struggles caused by IBD's.  I have an AA & BA in Sociology, an AA in Music Education, and I'll be earning my Master's in Sociology this year.  I hope to either become an Occupational Therapist for children, a Child Behavioral Interventionist, or open up my own MFT Practice and become an MFT.  And I absolutely agree with you that this condition is so debilitating, to where others that don't have an IBD have no CLUE how we feel on a daily basis.  

Learning how to manage my symptoms has been pretty tough, as last year my husband and I were really put through the ringer, which also caused lots of stress, so I've had moderate to severe synptoms on and off starting in July 2019.  So I've had a lot of trial and error in finding out what works best for me in managing my symptoms.  Luckily my schooling is all online so that makes life SoooOOOooOO much easier when the need to use the bathroom every 5 minutes comes up..... but with my job I got so sick to where I had to go on a LOA at the end of July because I was getting so sick I was calling off work so much because I couldn't come in.  So I try to just rest as much as possible, but I also like to do small little activities around the house to keep my mind going and my body moving.  Although sometimes I overdue it and tire myself out, I'm so scared of becoming so weak to where I just stay in bed all day.  School really helps keep my mind occupied as well.  I also like to go on short walks around my apartment complex to move around and get some fresh air.  What do you do to manage/maintain your symptoms when you are in a flare or are just generally fatigued? 

Reply posted for MrsCruz19.

Also, what's your major? 

Reply posted for MrsCruz19.

Hi Becca! 

my name is Emily, and it's so good to know that someone else out there understands what it's like, I've felt so alone and confused. I'm studying Biochemistry right now, and I'm planning on going to medical school after college to become a doctor. I want to try and help other people who have been through this. It truly is a very misunderstood experience! Congrats on finally seeing a nutritionist! How have you managed to deal with classes/activities while also being in a flare up or just generally fatigued? 

Reply posted for Eveylime.

HI there!  My name is Becca & I was officially diagnosed with Ulcerative colitis on 01/16/20, but I was experiencing sypmtoms since December of 2018. I too was also diagnosed with a gluten intolerance (GI is testing further to see if it Celiac disease), & also have to avoid gluten as part of my diet.  

Like you, I also have lost a ton of weight and cannot gain weight/keep weight on to save my life.  I am 25 years old and lost about 40 lbs.  I am 5'3 and normally average between 125 - 130 lbs.  I am currently 94 lbs, and no matter what I eat, I cannot get myself to keep the weight on! And because I lost so much weight, I became so malnourished I broke my right hand and my left middle finger doing simple tasks... And the fatigue can be unbareable at times for me.  My fatigue sometimes gets so bad I end up staying in bed all day and only get up to go use the restroom.  I can barely get up and take a shower because showering tires me out easily.  

What do I do to try and cope with these symptoms?  A few things: of course I have my meds: Apriso, Dicyclamine, Prednisone, Nortryptalin, & Marinol.  I actually saw a nutritionist for the first time on Friday which seemed to be really beneficial for me so far.  She gave me 4 different supplements to help me gain my strength back, decrease my fatigue, re-hydrate my body, and restore and replenish all the nutrients I've lost.  The supplements she gave me are called  the following: Metagenics Metakids Probiotic, Gaia Herbs Echinacea Supreme drops, Genestra Magnesium Glycinate Liquid, and DaVinci Liposomal C Liquid.  Everything she gave me is for kids because she said since I am so weak she wants to take it easy on my body.  Then she said once we are able to restore my nutrients & I am not so malnourished, we are going to create a game plan for me to gain weight.  She also told me another thing that would help is drinking Chicken Bone Broth (you can find it at Target or Trader Joe's).  My nutritionist said it has lots of nutrients as well and it's pretty easy for the body to process.  For my joint pain,  I use CBD cream and I also use medical cannabis for my nausea, joint pain, to help me gain an appetite, reduce abdomical pain, and to ease bowel movements.  I know IBD affects each person differently, but I hope this helps somewhat.  

And kudos to you for still going to college!  If you don't mind me asking, what are you going to college for?  I am also in college too, and will be finishing up my degree this year.  

Nice to meet ya!