New Here, but not to Crohn's

Hello to everyone! Very happy to have found this forum! :sign0144:

I was diagnosed with Crohn’s in 2009; my GI Doc figures that I had been wandering around undiagnosed for about 10-12 years prior to that; mostly due to my procrastination, belief that I was invisible, able to withstand anything and, a busy doctor who was over worked.

In 2008 “AS” (Ankylosing spondylitis) took over my life! The pain was unbearable, body parts became severely inflamed (especially my lower back) and I believe the worst was my eyes… they would become so swollen; I could actually feel the eye pushing out. Luckily this appears to be a problem that comes and goes with flare ups. However, it was “AS” that assisted doctors in diagnosing me with Crohn’s (Ankylosing spondylitis in females is normally a secondary condition to Crohn’s). Between AS, canker sores, abdominal pain, diarrhea, etc. you begin to wonder if you are falling apart! (Nope still in one piece :ylol2

In 2009 I was started on a vigorous drug regime, all of which made me extremely ill, experiencing every side effect. The latest regime is Mezavant, Salofalk and Imuran, all of which I am giving up for Humira. I just received the prescription and now getting ready to start this new drug.

But I need your help or advice……

My problem is how I feel… constantly Sick and Tired, no matter what prescription I am on. Constant nausea, sleep problems, constant bathroom trips, fatigue, dizziness, HUGE weight gain (which makes little sense when I am not on steroids and I do exercise and watch what I eat) and extremely bad bloating. I may harm the next person who asks me if I am almost due….grrrr :ytongue: I have food tracked and still not sure what causes it, sometimes it lasts for an hour, sometimes longer or shorter… do others feel this way or experience this? Do others get frustrated when you are having an uncomfortable flare up and someone asks you what is wrong? You respond that you are experiencing a Crohn’s issue and they turn to you and say “everyone has that now, suck it up” or “Smith, in office 2A has that; he does this and eats this, maybe you should to because now he is cured!”
With all that said, I am happy to have found this forum; to know that what I am experiencing is normal and does happen or, even signs and symptoms to watch out for.

It is great to meet you all!

I have found yoga to help with the bloating issue, as well as good probiotics. I have found avoiding breads, grains, etc. helps reduce the bloating. There is probably a common thing you are drinking or eating that is causing the inflammation, but hard to figure it out. Try Bikram Yoga's wind removing pose twice daily and that will help reduce the air trapped (bloating). I have found that ice tea causes much bloating with me in the summer (took a while to figure that one out). Sometimes we do not think of the obvious in front of us. Go on as clean a diet as possible and you will at least get some relief before you try little at a time back into diet.

Welcome, thanks for sharing be sure to find a cozy place in the forums and stay awhile! Humira really is a great medication it has worked very well for me. I get a lot of your same symptoms. I found the majority of them were due to very low vitamin levels but I still have them even after. Stick with Humira and let us know how it does.

Hi BSweet,
The forum will hopefully offer you lots of support and guidance! I joined not long ago after my crohn's diagnosis in June so I don't have a lot of experience with people staring at me because I haven't left the house much. But I can only imagine how terrible it must be. Sometimes I feel like a wounded animal and just isolate myself because of the pain.
I started humira and the humira thread is really helpful too. The two tips that I picked up from the forum and my nurse that really helped are: 1. take the medication out of the fridge 20-30 minutes before injecting and 2. ice the area you are going to inject. Both of these really helped the second time I did the injections (I have only done it twice so far).
Feel better soon!

Thank you Mickey, Thermo and Amanda D for your welcoming responses and great information.

Mickey, I am taking your yoga suggestion to my instructor tomorrow so she can teach me how to do this properly! Such a great idea! I am also going to try the clean diet approach, I think that would do the trick in eliminating some of the trigger foods for all.

Thermo, Thank you for your welcome, it's great to know that these symptoms can afflict more people then just myself. However, sucks at the same time knowing others have to experience it! I am lucky though my doctor started me on a vitamin regime, recognizing that I was seriously lacking. The problem now is finding credible, quality vitamins and thank you for the good news on Humira! I am hoping if it works for you, then it will work for me as well as it did for you!

Amanada D, It's great to know that you are having success with this forum! A place where everyone knows what you are talking about is great! The pain and isolation simply sucks! Every time I go out I know where all the bathrooms are and always have a back up plan it doesn't help with the pain or discomfort though. I will take your advice on the Humira, I am just waiting for it to come in and then I am off and running! Ok, maybe walking I hope it kicks in soon for you and you feel better soon also!!

Thanks again!!

Hi there and welcome

Have you ever been tested for small intestine bacterial overgrowth? Have you had your vitamin B12, vitamin D, and magnesium tested?

All are common in people with Crohn's and would explain many of your symptoms.

Again, welcome

Hi David and thank you for the welcome

When I was first diagnosed my GI Doc set me up on a vitamin regime that I try to maintain. Vitamin D, Iron (Anemic), B Complex and, a Bone building supplement. I also take a multi vitamin, I honestly don't know the last time my levels were checked though.
I do not recall ever being checked for small intestine bacterial overgrowth, but after reading the link...wow does that ever sum up what I feel. I have a check up coming up, I will definitely be bringing up a new check on the vitamins and arranging a bacterial check!

Thank you for the great info, I am actually hopeful that I can diminish some of these symptons!

Definitely ask for the vitamin levels to be tested. For example, if you were indeed deficient in vitamin B12 due to crohn's disease, the amount of B12 in the B complex would very unlikely to be sufficient to get you to optimal levels.

Thank you David, your comments really helped!

I asked my GI about SIBO and he reminded me; in my last round of tests he had mentioned that there was an overgrowth. Without understanding I ignored it and the GI.... so yes there was overgrowth. The next day I started the SCD with his endorsement and, together we agreed to try it for a year and see how it works (6 days and I feel good!)…my husband involuntarily feels good too :ylol2:. Oh, and you were also right about the vitamin deficiency!

BSweet said:

Do others get frustrated when you are having an uncomfortable flare up and someone asks you what is wrong? You respond that you are experiencing a Crohn’s issue and they turn to you and say “everyone has that now, suck it up” or “Smith, in office 2A has that; he does this and eats this, maybe you should to because now he is cured!”
With all that said, I am happy to have found this forum; to know that what I am experiencing is normal and does happen or, even signs and symptoms to watch out for.

It is great to meet you all!

Click to expand...

Hello and welcome!!!!
I was reading your story and I completely understand about the frustration!
I used to blame it on my steroids, but I have been off of them since January, and sometimes I just want to smack people who try to act like its no big deal, or they have the miracle cure!!

People tell me, things will get better... and Im sure one day I wont have the nausea or stomach pain, or the urge to smack people! lol, but its not what you want to hear in that state.

I hope you get alot out of this forum.. Some days I just online, just to read that there is other people, annoyed, or sad, or even who are doing great! Just so i know im not alone.

Also it is great because you learn knew things... I have never heard of Ankylosing Spondylitis. That sounds horrible!
I hope you are in remission, or at least can see the horizon to remission.

I'm glad you're feeling a little better already on the SCD. That's great!

When you say I was correct on the deficiency, did they start you on a higher dose of B12 or am I misunderstanding?

They have put me onto a higher B12 regime. I was not getting enough (of any essential nutrient) through the complex, multivitamin and/or other supplements I was taking. So, due to malabsorption they have started IV rather than oral, since beginning this, nausea has lessened, however I can definitely tell when I miss an appointment or fall of the "eating" wagon as all symptoms rush back.

You feel ill when you miss an appointment for your B12 injection? How often are you going? And do you know what your B12 level tested at?

I receive a multitude of vitamins, minerals etc. (B12 is only 1 of many that I received intravenous via a Naturopath). I currently receive this treatment once a week, then it will continue on at a bi-weekly rate (from what I understand). When I miss a treatment I feel lethargic, so tired and achy (almost flu like). I have no idea what my levels were, its a question that I never seem to ask, or never remember to ask. However learning the importance of knowing, it's alot to remember!... At this time I am inbetween some doctors, which means having very little answers.

I have had problems all my life and I'm 37 years old. Was diagnosed since Nov. 2002 with severe bleeding ulcers that just kept getting worse until I had surgery in July 2003 and every year and 1/2 after that I would be admitted into hospital for bleeding ulcer problems. I was once even given Remicade? (not sure if spelled right) but that didn't even work, not even Predisone?, or any of the Crohn's disease meds worked. Only thing that seems to work for not getting ulcers is eating right and keeping stress levels down which is hard. I get severe acid reflux problems too. Not even over the counter meds., such as for colds and pain meds work. I recently went to mental clinic and the meds I was given for depression cause severe to slightly mild (more severe than mild) headaches for 3 to 4 months. Can't even take liquid or B12 pills because I get really bad backaches and kidney pains. My Aunt said my Grandmother had to get B12 shots. because pills and liquid B12 didn't work or gave her problems and she had Diabetes and not Crohn's Disease. I have lately been having lightheaded spells and came close to blacking out once or twice. Wished I can take stuff and make problems go away, lol but my surgeon doctor said he was all out of those magical pills that make problems go away. Just wanted to know your not alone in your health problems, hopefully meds will work for you.

Thank you Embrat21,

I have come to realize medications, health; IBD etc. are all active in a vicious cycle. Between ineffective drugs, to side effects, to whatever may occur, such an odd journey to wellness, it can completely suck!!

Eating right and low stress is something I have just started and so far it’s actually going well :dance:

The Light headed and possible blackouts are scary any day!! Any ideas what is causing them???? I know I can get that way when I forget my iron (anemia)... I hope you get it figured out!! :ghug:

Re: iron, if you do a lot of your cooking, cast iron cookware helps. Just use it on a regular basis and you will get a little bit of extra iron in your diet. (It's not enough to justify stopping supplements, but it might help prevent those anemic blackouts. . .)

Thanks for info., I do love cooking with Cast-Iron, the pans seem to last longer than regular ones, right now my Aunt cooks with that new kind of pan out where food never sticks to the pans (green something) those are ok but I love my cast-iron skillets.