Still not sure what to think

[Quiet]

Where to start... well i'm 28 and female.

As a child I always had a very sensitive stomach to the point I had eating disorders.

When I was a teen I ran into a lot of issues with vomiting when I would eat, had a lot of anxiety and depression issues, lived in constant pain and migraines. The doctors always just said it was all in my head.

A few years ago the vomiting got a lot worse, I was in severe pain with crippling migraines, anxiety, depression and nausea. The doctor said I had Fibromyalgia.

Within the last few months I have been having problems with my bowels where there was bleeding, constipation, diarrhea, mucus and so easily upset that when I had to go, I had to go. Which meant running to the bathroom and then in tears from the pain. Last month I woke up with horrible cramps and was passing blood. Large dark clots of blood. All day and I couldn't stop. I ended up going to emerg where they took blood and said inflammation levels were high. The doctor said he suspected crohn's. Though that I was having problems with getting rid of weight vs keeping weight on he didn't know what to think. He referred me to a GI Specialist, I had a colonoscopy last week and the doctor said no doubt in his mind at all that it is crohn's. He took biopsies and said he will call me when the results are in and we can figure out where to go from there.

I am still very torn on how I feel. I read so many horror stories of crohn's. And to think I may have Fibromyalgia as well as crohn's just makes it that much more depressing. I can't lose weight because of the stupid meds from fibro(I went from 130lbs to 185lbs in less then a year since starting the fibro meds even though I work out and watch what I eat). I am scared that the crohn's meds are going to make the weight gain even worse. Never mind all the other crazy scary things you read and hear about crohn's.

I guess I am here now in hopes of finding others who face the same thing and just find out more of what to except and how to deal with it.

The real kicker to the whole thing is... I am super shy when it comes to talking about bm's or any sort of functions from that area. So go figure the person who is shy about bm's, gassyness and other issues is the one who ends up with crohn's

 

[Lisa]

Hi and welcome ot the forum!....Please note that you have found a place where you can freely talk about all the things you mentioned.....pretty much nothing is sacred here!

Please look around the forums, you will find LOTS of information here!

 

[Quiet]

Thank you! I am going to be nosing around checking things out a lot over the next while. I am terrified of medication so I am hoping I can discover ways of handling it without medication. I am doing a complete re-haul on my diet. Though I am such a picky eater and never eat spicey foods or anything like that I don't know what I can change. So more reading.

I was crushed when I discovered I can't drink my shakes anymore. I love strawberry and raspberry shakes *sigh*

Also I have noticed since my colonoscopy I have been super sensitive to things I never had problems with before. Is this common? Like I haven't been able to stomach dairy products since I had my scope, I can't eat sour cream and onion chips anymore... weird things that never bothered me now send me running to the bathroom instantly after eating or drinking

 

[rygon]

Dont be worried about medication as it has helped a lot of people, including me, here. I dont particularly like being on it, but its the only thing that has helped. I am trying a diet change at the moment but as t takes a while, i will rely on drugs at the moment to help.

i think this is one disease that you cannot keep private lol. I have told everyone who has asked and stayed open to all questions and responses. Its not a disease you can be embarrassed about. Theres no point in putting worry on yourself and making the disease worse due to shyness.

 

[Quiet]

The reason I don't want medication is because they all have the side effect of weight gain. I am already over weight despite working out 5 days a week, riding horses 6 days a week and watching what I eat *sigh* The medication for my Fibro has caused serious weight gain

 

[Jim (POPS)]

Welcome to the forum. I know you will get all the support you want around here.

Jim (Pops)

 

[Mehita]

How is fibromyalgia diagnosed? I'm just wondering if you've had Crohn's all along and maybe not fibro? There are a lot of similar symptoms with joint pain and things. Just curious.

My only advice is to not be afraid of the meds and their side effects. All meds have side effects... even Tylenol. There are many goods drug options out there for Crohn's and can improve your life significantly. If you have side effects, then you just move on to something else. Untreated Crohn's is far scarier than the side effects. My son's first GI didn't treat him with meds and he ended up developing a nasty stricture that required surgery at age 12. In retrospect, I should have pushed more and asked more questions, but I didn't and that's where we ended up.

Diet can help and has helped many people, but it's not a cure. Just keep a food log for awhile and track what triggers symptoms. When you're in remission, you may be able to have your shakes and chips again, but right now your body just isn't very happy.

And be sure to tell your GI everything. I know it can be embarrassing, but sometimes the little details are pretty significant and I can promise you you're not telling them anything they haven't heard before.

I hope you feel better soon. Look around the forum and ask questions. Lots of good people here with a lot of different experiences.

 

[Quiet]

The Fibro diagnosis basically came from a check list of symptoms and different pressure points. I fall into a huge chunk of the symptom list of Fibro in terms of the neurological issues. It was a neurologist who diagnosed me after being hospitalized with migraines for a month.

I know I need to stop being afraid of the meds for Crohn's. I just was so happy because I have weaned off most meds already for depression and my Fibro which has been helping my weight loss. Its a never ending vicious circle. I just want to be skinny again and healthy *sigh*

Thank you for the warm welcome and support. I have been reading a lot today and it has really helped things make sense. I am sure this will really help me ease my shyness that is for sure lol.

I am going to make up a list of things for my GI doctor when I go to see him about my test results from the biopsy.

 

[SylvieA]

Hi Quiet, from another "reserved" NBer Feel free to PM me anytime.

Please, don't be afraid of meds. I was diagnosed in 2002 with crohn's, started Pentesa as a preventative. I started feeling worse on meds, but instead of seeing my GI about it, I just stopped taking them. I've always been afraid of meds, even took everything for me to take a Tylenol. Plus, I was about to get married and wanted to start a family and didn't want to take any meds during trying to conceive, pregnant or breastfeeding. I did feel better off meds though(could of been all in my head, don't know), did just fine for 10yrs with nothing, but I'm now in a big flare up, and had to have surgery. I may not be going through what I am now if I kept in touch with the GI. I started feeling symptoms about a year ago, but by the time I got another referral, my flare up had gone to far. Been in and out of ER and hospital stays for a little over 2 months and still weeks before I can enjoy life again.

So DON'T be afraid to take what's needed, I wish I didn't.

As far as weight, even though you watch what you eat, you could be eating all the wrong foods for you. You need lots of veggies, meat, some fruit, very little starchy foods, and not to forget healthy fats. Fat fee or reduced fat can make people eat more of the wrong foods. What I mean by healthy/good fats, full fat yogurt(with probiotics), full fat dairy, real butter for cooking or spreading, olive oil, coconut oil. Stay away from refined fats, sugar and carbs. Even on meds with weightgain side effects, you can boost your metabolism by limiting anything refined and processed. And whole foods including good fats will keep you fuller longer and less cravings. I'm not a nutritionist, but did a whole lot of research and have seen a few nutritionist and just going by that and what worked for my family. And just eating like this may of kept me from flaring up earlier, especially without the meds.

 

[Hope345]

Quiet,

sending lots of support your way too.
My daughter has Crohns, and my other daughter deals with migraines and other stomach issues. you got me thinking again too... maybe she has a few symptoms I need to really watch.

We hate giving our daughter the strong meds too, but you have to get control of this disease. The only weight gain med I know of is Prednisone, and you would not have to be on it for very long. It does have severe side effects, but they put you on only the dose you need, and the side effects go away. It usually stops the inflammation quickly so the other meds can start working for you..

I am so sorry you have dealt with so many health issues. this is a tough disease, but our daughters symptoms are currently under control.

Everybody responds a little different to everything from food to meds. You will find what works best for you.

We found we had to eliminate lactose, maltodextrine for a while when she was in a flare. Now our daughter can eat anything right now, except no popcorn. Those husks can wreak havoc in IBDers.

Once the inflammation is under control, I am big on probiotics. Read up on those too. I believe they are an important addition to staying in remission.

Keep us informed of how you are doing and know that you are not alone.
take care